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Fibromyalgia Drug Savella Should Be Pulled From Market, Says Public Citizen Group

January 2010 Petition Letter To FDA Is Sent One Year After The Medication Was Approved For Sale In U.S.

(Posted by Tom Lamb at DrugInjuryWatch.com)

On January 21, 2010 the Health Research Group arm of Public Citizen sent its "Petition to Ban Fibromyalgia Drug Milnacipran (Savella)" to FDA Commissioner Margaret Hamburg, M.D. 

This Public Citizen letter Petition begins as follows:

Dear Dr. Hamburg:

Public Citizen, representing more than 65,000 consumers nationwide, hereby petitions the Food and Drug Administration (FDA), pursuant to the Federal Food, Drug, and Cosmetic Act 21 U.S.C. Section 355(e)(3), and 21 C.F.R. 10.30, to immediately remove from the market the drug Savella (milnacipran; Cypress Bioscience, Inc. and Forest Laboratories, Inc.) because it has highly questionable clinical efficacy and has been found, in randomized controlled trials, to cause a large number of potentially serious adverse reactions including hypertension, increased heart rate, and increased suicidal ideation. On July 23, 2009, milnacipranā€™s approval for fibromyalgia was denied in the European Union for these very same efficacy and safety reasons….

For some contextual information we turn to a January 20 Bloomberg news article, "Forestā€™s Drug Savella Should Be Recalled, Public Citizen Says":

The FDA approved Savella, also known as milnacipran, as a treatment in January 2009 for fibromyalgia, a disorder characterized by a variety of pain-related symptoms including muscle pain and headaches. In July, European regulators rejected the drug, saying its benefits were marginal and didnā€™t outweigh the risks. Public Citizen said the drug is not effective in treating pain.

ā€œThe larger issue is this is a new kind of drug for fibromyalgia,ā€ Sidney Wolfe, director of Public Citizenā€™s Health Research Group, said today in a telephone interview. ā€œThis is the first drug only approved just for fibromyalgia, and it shouldnā€™t have been. There are serious safety risks that outweigh the benefits, and the drug doesnā€™t work for pain alone.ā€

More information is found in Matthew Perrone's January 20 Associated Press (AP) article, "Group Urges Recall of Drug for Fibromyalgia — Public Citizen questions benefit of pain pill for fibromyalgia, points to blood pressure risks":

Since the FDA approved Savella last January, doctors have written more than 250,000 prescriptions for the drug, according to data from IMS Health….

FDA has cleared two other treatments for fibromyalgia: Eli Lilly's antidepressant Cymbalta and Pfizer's anti-seizure treatment Lyrica. Both drugs were cleared based on their ability to decrease fibromyalgia pain, though it's not clear how.

The cause of fibromyalgia is not known, though some researchers point to abnormalities in how patients with the disorder process pain nerve signals.

We will continue to watch for developments concerning the relatively new fibromyalgia medication Savella, and we welcome any information that you may about this emerging drug safety issue.

______________________________________________________________________________

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101 responses to “Fibromyalgia Drug Savella Should Be Pulled From Market, Says Public Citizen Group”

  1. Mel Avatar
    Mel

    Savella has helped me when nothing else would. I have had barely any side effects and seen drastic improvement in my pain and fatigue. I was becoming so debilitated that I sometimes had trouble just with personal hygiene. It has completely changed my life and I don’t know what I would do without it.

    Reply
  2. Tom Lamb Avatar
    Tom Lamb

    Mel:
    Thank you for sharing your experience with Savella.
    We wish you continued good results going forward.
    I hope you keep reading Drug Injury Watch.
    Tom Lamb

    Reply
  3. Fibromyalgia treatment Avatar
    Fibromyalgia treatment

    Hello, I have had Fibromyalgia for 63 years. I have had deep muscle pain for years, also IBS, migraine headaches, & many more symptoms. I have tried many prescription drugs over the years & found nothings really helped the FM. I have been taking Savella for 22 days, these are some of the side effects I’m experiencing. Hot flushes, faintness,& nausea. To my surprise I have no muscle pain at all. How much longer do I have to ut up with the hot flushes? They are terrible. I’m having them all day & nigh long.My clothes get drenched with sweat. I wonder if anyone know if this will go away. Thank you, Bonnie.

    Reply
  4. Tom Lamb Avatar
    Tom Lamb

    Bonnie:
    I suggest you speak with the doctor who prescribed the Savella about these apparent side effects.
    As I am not a physician, I am not in a position to give any medical opinion.
    I wish you the best, and hope that you continue to read Drug Injury Watch.
    Tom Lamb

    Reply
  5. Bety Avatar
    Bety

    I was placed on Savella for fibromyalgia pain and depression. I was on the drug for about 3 weeks and it just about killed me! I have never had a problem with hypertension before I was placed on this drug but my blood pressure rose to 178/128 and caused my heart rate to go up to over 130. I have seen the doctor more in the past 2 months than I have in the past 2 years. I was so weak that I fell several times while taking the drug and the hot flashes were horrible. I have never had problems with my thyroid before taking Savella but I do now. I have been off of the Savella for almost 3 weeks now and I am still having problems with my blood pressure and my heart rate. I also have been having increased depression and I hate to admit it but over the past 2 weeks, I have had suicidal ideations. I am doing a little better now that my doctor has started me on a different anti-depressant and as it is getting into my system, but I am still having to deal with the hot flashes and hypertension and heart racing. I would have to agree that this drug should not be on the market.

    Reply
  6. Tom Lamb Avatar
    Tom Lamb

    Bety:
    Your experience with Savella sounds like a classic case of what Public Citizen was writing about in their Petition letter to the FDA.
    I wish you the best in all aspects going forward.
    Tom Lamb

    Reply
  7. Bonnie Avatar
    Bonnie

    I’ve been fighting with fibromyalgia for nearly 15 years. My case is milder in terms of pain, although the fatigue it causes is disruptive to daily life. I also suffer from Major Depressive Disorder, which has been brought under control with a dose of 40 mg/ day of Lexapro. I have had mostly good results with this drug, and only 1 minor side effect.
    In November of 2008, I became afflicted with a parathesia of unknown origin, resulting in numbness, tingling, and an icy coldness in my upper body. After neurological causes were mostly ruled out, my rheumatologist decided that I should try neurontin. When that had no effect, he had me try Lyrica, which also had no effect except to make me dizzy.
    Then we switched tracks. He had me replace the Lexapro with Cymbalta, which was done under proper titration changes. The Cymbalta was ineffective on the pain, and less effective on the depression than the Lexapro, so I titred back to the Lexapro.
    Then he had me try Savella, while staying on the Lexapro, In the two weeks I was on it, not only did I not find any relief, my mood went from moderately OK to a point where I felt no emotional connection with anybody, and increasing despair. It got so bad, I put in calls to both my counselor and my meds coordinator to ask about possible voluntary commitment, and then left for the rheumatologist’s office. By then I could tell I was extremely depressed. It did not help that the doctor was delayed by an emergency, and I was left alone in a windowless room for at least 45 minutes. I went to my purse to take the diazepam I have prescribed for anxiety. Also in there at the time was my bottle of generic Ambien (also prescribed, though I did not use it unless necessary). I didn’t normally carry it around, but had been away the previous weekend, and it was still there, as I had not used it recently.
    The temptation was too great, and the despair too deep. I took all of both bottles. When I woke up in ICU, I can’t tell you if I was relieved or disappointed. I spent 4 days in a transitional psych treatment center, and went home with a huge sense of guilt along with specific medical instructions and follow-up appointments. I was also taken off of the Savella.
    Over the next few weeks, my mood improved steadily. One day I decided to go back and read the info on Savella. There was the red box I had seen before, warning of possible suicidal tendencies in teens, young adults, and the elderly. At age 51, I was in none of those target groups. But as time passed and my mood became more under control again, it became clearer to me that, even though I was in the same amount of pain, I was no longer in that dark hole. The only change between the suicide attempt and that time was coming off of the Savella. I can only conclude that, despite not being in the target range for suicidal behavior, the Savella was indeed responsible for my descent into suicidal depression.
    It’s been nearly a year, and the parathesia is still not resolved. Yet there has been no further deep depression, nor desire to end my life. This only reinforces my opinion that the Savella was the instigator of my problems.
    I don’t know if this story is useful to you. Maybe it’s only one small bit of data to enter in. But I feel it’s important to know that the risk of suicidal thoughts and actions is not limited to the groups that the medication states.
    “Bonnie”

    Reply
  8. Tom Lamb Avatar
    Tom Lamb

    Bonnie:
    Thank you so much for sharing this very personal story with us.
    Your story certainly is relevant to the issue of whether or not Savella is an unsafe drug.
    We wish you the best in all aspects going forward.
    Tom Lamb

    Reply
  9. Bonnie Kunce Avatar
    Bonnie Kunce

    I came across your website as I was searching on the web for cases of heart damage caused by Savella.
    I was put on Savella by my doctor for my fibromyalgia in August. I was started at low dose (12.5mg) TID with the plan to work me slowly up to 50mg TID. I had noticed some side effects, mood changes, anxiety, and some increased fatigue after the first couple of weeks. I was only up to 37.5mg at 5 weeks when big trouble started. I not only have no relief from my fibromyalgia pain, but have suffered more serious side effects from the drug. In the past two weeks I’ve had increasing weakness and fatigue to the point that I couldn’t function. Last week my blood pressure (which normally runs low) spiked and my heart rate went out of control. In addition to the hypertension, I’m having heart palpitations and chest pain, severe headaches, extreme weakness, and vertigo. I’m having to monitor my BP and heart rate throughout the day and am out of work and on complete rest. Just getting out of bed to sit up in a chair makes my BP and HR spike. I’m concerned about potential damage to my heart and will have to be monitored closely until things return to normal, which I hope they do.
    Have you heard of any instances of heart damage due to Savella? Have people reported to you that their symptoms improved after stopping Savella?
    If there’s a petition to sign, let me know as I’m in.
    Thanks,
    Bonnie
    Cary, NC

    Reply
  10. Tom Lamb Avatar
    Tom Lamb

    Bonnie:
    As you can see from the January 21, 2010 “Petition to Ban Fibromyalgia Drug Milnacipran (Savella)”, above, cases of hypertension have been reported by patients using Savella.
    I have not followed Savella side effects closely, so I am not the best person to respond to your inquiries about heart damage and whether related symptoms will cease following one stopping the drug.
    I will point out the FDA advises that one should not stop taking a prescription drug before consulting with one’s doctor.
    I wish you the best going forward.
    Thanks for reading Drug Injury Watch.
    Tom Lamb

    Reply
  11. Blake Avatar
    Blake

    I have suffered from Fibromyalgia for approximately 12 or 13 years beginning after a serious accident. I participated in a Lyrica drug study in 2003 which was a disaster. Not only did I gain over 30 lbs in less than a year, but Lyrica permanently blurred my vision and adversely affected my hearing…
    Last week, my doctor prescribed Savella. I completed 5 days of the Savella titration pack before I had to quit. During that period, I experienced increased pain with no signs of improvement. I also experienced nausea, stomach pain, facial warmth and red skin that looked like a sunburn, increased sweating, dizziness, increased difficulty falling asleep even though I am taking Ambien, decreased sexual desire, severe pain AND swelling of my testicles, difficulty urinating, red spots under the skin, and itching…
    I could add blurred vision but that was already ruined by Lyrica. For those experiencing blurred vision, they might want to be aware that it is a permanent condition. Lyrica permanently blurred the lenses in my eyes, requiring cataract surgery to repair. It will cost $2300 per eye to repair the damage Lyrica caused. My guess is that Savella is also damaging your eyes if you are experiencing blurred vision and if you are, itā€™s probably already too late to undo the damage. Quitting the medicine won’t bring the vision back…
    I don’t see any good reason to continue taking Savella. I was seeking pain relief. Savella is INCREASING my pain and adding to my problems. How do these drugs get passed the FDA? Once again, I am extremely disappointed…

    Reply
  12. Tom Lamb Avatar
    Tom Lamb

    Blake:
    I appreciate you providing this detailed account of your unfortunate experiences with Lyrica and, more recently, Savella. I hope you reported your apparent side effects to the appropriate doctor(s) for their consideration.
    I wish you the best going forward and hope that you continue to read Drug Injury Watch.
    Tom Lamb

    Reply
  13. Hill Pamela Avatar
    Hill Pamela

    I’m only 30 and I was told 3 years ago I have Fibro. The condition at first was complete pain I had trouble walking. I’ve been on the drugs Lyrica, and Cymbalta. Yesterday was the first I heard of Savella. My insurance made me stop my medications cold turkey saying I haven’t tried “Savella”. I’ve been SO SICK from withdrawal. Can’t believe they can do that to me with no warning! No one told me about this medication Savella before. It’s so new to me and I really have fear of taking this drug now seeing the side effects.

    Reply
  14. Tom Lamb Avatar
    Tom Lamb

    Pamela:
    You should discuss you concerns and questions about Savella with the doctor who is / would be prescribing this drug.
    You may also want to let this doctor know about how the insurance company is attempting to “direct” which medications you use; your doctor may not like that type of interference with your treatment….
    I wish you the best and hope that you continue to read Drug Injury Watch.
    Tom Lamb

    Reply
  15. Jennifer Avatar
    Jennifer

    My story is a lot like Bonnie’s. My doctor took me off Lyrica because of the permanent eye damage it has caused and put me on Savella. I was on Pristiq to at the time for about four months. I was waking up with extreme panic attacks at three in the morning every morning and I felt like I was coming out of my skin, and I could not be still. I was extremelly anxious and had to see a phyciatrist that told me it was SSRI syndrome. I had a few ER visits with severe suicidal thoughts and severe panic attacks. I got of the meds and it has been three months and I still don’t feel right. I was hospitalized for a week with severe depression and things are still not good for me.

    Reply
  16. Tom Lamb Avatar
    Tom Lamb

    Jennifer:
    I am sorry to hear about your unfortunate experience using Savella, and hope things improve for you as soon as possible.
    Tom Lamb

    Reply
  17. Melanie Avatar
    Melanie

    I have recently stopped Savella and have experienced what I think is a side effect from stopping it. I regularly go to the gym which has helped my fibromyalgia ten fold, but I recently went to the gym after stopping the drug for 2 days and worked my upper body by doing pull ups and benching. My arms have become swollen and sore. My arms are 2 inches larger than normal. The swelling has not gone down in almost 5 days. Has anyone else experienced anything like this? I am still working with my physician regarding this. No one has come out and directly stated it is a side effect, but I am thinking it could be. Any ideas?

    Reply
  18. Tom Lamb Avatar
    Tom Lamb

    Melanie:
    Thank you for your Comment and the inquiry concerning your use of Savella.
    While I have not had anyone report to me the possible side effects that you have described,
    perhaps someone else reading this item might have had some similar experience, or have some insight, that they could share with you by replying, here.
    I wish you the best in all aspects going forward.
    Tom Lamb

    Reply
  19. Theresa Avatar
    Theresa

    I had just finished the tritation pack of Savella and filled the 50 mg dose and my side effects got worse on the Savella. I had been having the headaches and sweating but my dr has said it might take up to 12 weeks to work so I was trying to be a good patient and wait it out. I got very bad flu like symptoms and my blood pressure went and pulse went very high. My dr had me stop the Savella 18 days ago. A week ago I started having chest pains and I thought I was having a heart attack. My ekg was normal so far but my blood pressure and pulse are very high and I am very weak. I went to a cardiologist and he put me on aspirin and gave me nitroglycerin and has ordered an echocardiogram and an stress test. As soon as it is approved by insurance I can have it if I don’t die first. I always had low blood pressure before. Obviously I also wonder if this drug should be on the market.

    Reply
  20. Tom Lamb Avatar
    Tom Lamb

    Theresa:
    I appreciate you sharing with us this information about your medical condition.
    Certainly, your treating doctors are in the best situation to determine if there is any association between your Savella use and your condition.
    We wish you the best going forward.
    Tom Lamb

    Reply
  21. Cindy S Avatar
    Cindy S

    I have been on Savella for Fibromyalgia since Oct 2009. It was a “miracle” drug for me that lasted maybe 6 mos & all the symptoms returned. I’ll leave out all the stuff between then & now because it is right now that is really concerning me! I started weaning off Savella March 31, 2011. I was on 100mg by then. My physician told me to try cutting it in half & I did with HORRENDOUS WITHDRAWLS! April 3, 2011 I had to increase to 75mg for about a week, was doing better, but many side effects. I decided I felt well enough to back down again to 50mg April 11, 2011 & again had HORRIFIC withdrawl! Knots, joint pain, swollen fingers, ankles, feet, legs arms. Headaches, depression, tremors-ALL so bad that I had to take Valuim & Neuronten to help me through a few days. On April 16, 2011, I had to go back to original 100mg in order to try stopping the horrible withdrawls. April 17, 2011, I went back to the 75mg because that seemed to work the best in coming off; I thought I would go back & start again at that point. Today, April 18, 2011, I feel “caught up” in the withdrawls I experienced when I backed off to 50mg & tried to tough it out! I dont know what to do at this point; my doctor seems to be ignoring my request for help! My husband & I have gone as far as to try to find a facility to help me come off this stuff & not treat me like an addict, but we havent found anyone that knows of even the drug! This has us SO frustrated at the pharm co! How in the world can they put out a drug for patients suffering enough already to suffer even more when it stops working & we try to get off of it???

    Reply
  22. Tom Lamb Avatar
    Tom Lamb

    Cindy S:
    I appreciate you taking the time to share your experience as regards trying to stop your use of Savella.
    Perhaps other readers with a similar experience, or some knowledge of the withdrawl “problems” you have gone through, can provide some guidance.
    I wish you the best in all aspects going forward.
    Tom Lamb

    Reply
  23. Elaine S Avatar
    Elaine S

    Wow. My doctor has been pushing this drug for a while. I read the side effects & was too fearful to try it. I finally agreed to try it & took the sample packet but something has told me not to try it. Tonight I came across this site & its helped me make up my mind. I’ll continue with the pain & the FM symptoms rather than take the drug & have other issues (possibly worse problems) develop. Every thing that I have heard sounds like in most cases it starts off good & ends up a disaster. I think God has been speaking to me about this & led me to this site. Thank you!

    Reply
  24. Greenis824@yahoo.com Avatar
    Greenis824@yahoo.com

    Tom, I too took Savella for about nine months. I now have an ICD-defibulator and pacemaker. I am 43!! My heart became weak-20% EF. I was told by the Rhuemetologist that he doesn`t recommend Savella to his patients for this reason! My family doctor prescribed the med`s and the follow ups. Within a month and a half of “not feeling right” to having the ICD was about a month and a half! The pitiful thing was I had EVERY symptom of CHF in women and was seeing some sort of doc about twice a week in that time! None of them thought that I fit the criteria of CHF. My life will NEVER be the same. I want to be involved in the class action suit. Please email me. Thank you.

    Reply
  25. Paula Avatar
    Paula

    Your doc needs to do an Echo on your heart. I retained water in my upper body and had CHF fom taking Savella.. Do this ASAP!! Don`t wait another day-don`t go to the gym. The drug weakens your heart. Until you KNOW your heart is fine. The stress tests didn`t show my problem but the echo sent me directly to the hospital and an ICD!! gOOD LUCK AND GET BETTER!

    Reply
  26. Linda Kitterman Avatar
    Linda Kitterman

    I tried Savella and within 2 hours of taking my first pill, I was rushed to the Emergency Room due to violent repeated vomiting that would not stop. I vomited for 2 straight hours before the ER physician could get it to stop. I thought I was going to die. I could not catch my breath in between bouts of vomiting. This drug should absolutely be taken off the market!!

    Reply
  27. Tom Lamb Avatar
    Tom Lamb

    My law firm is not handling any Savella cases at the present time and, as such, we cannot help you with this matter. I suggest you contact another law firm if you remain interested in a possible lawsuit.
    I wish you the best in all aspects going forward.
    Tom Lamb

    Reply
  28. Vanessa Avatar
    Vanessa

    I have taken two pills, on last evening and one this morning…the beginning of the packet…and I am VERY nauseated. I decided to not continue, but now I am wondering how long this will stay in my system. Thank you for this discussion, I am so thankful to read these other experiences and know that what I am feeling is legitimate.

    Reply
  29. Ann G. Avatar
    Ann G.

    I was diagnosed with fibromyalgia
    10 years ago and have been on
    Savella for about 4 months. I
    have been experiencing a lot of
    the same symptoms mentioned by
    others here. I have had a substantial
    reduction in muscle pain. The problem
    is that the side effects of the drug
    seem to outweigh the benefits. I now
    have a resting heart rate of 123bpm.
    I have fainting spells. I have been
    experiencing a level of extreme
    exhaustion that I cannot even begin
    to describe. Like others here, I have
    become depressed to the point that
    I have had suicidal thoughts. I know
    it is the medication, as I have not had
    any of these symptoms previously.
    I wish all of you the best of luck in
    finding a solution to your pain. I am
    going to start titrating off of this
    medication immediately!

    Reply
  30. D Avatar
    D

    Mr. Lamb – Although this post is rather old, I wanted to add some info. I am a fibro suffered and a support group leader. I have had so many complaints about Savella and am convinced it is a dangerous drug! In addition to that, I was fool enough to take both Lyrica and Cymbalta (the other fibro “wonder drugs” for and extended period of time. I now suffer from uncontrolled HBP, Aortic Valve Disease, and Left Venticular Hypertrophy. I had absolutely no heart damage before these drugs except occasional hpb controlled by meds. – I am now on 5 blood pressure meds along. These fibro drugs, in my opinion do not do enough for our symptoms to end up with ruined hearts – the end result of the side effects is death!!! I would be happy to get involved with any action you may be willing to take to at least reign in these medications. By the way, it was my decision not to take Savella because of all of the heard damage reports I had already been made aware of. My heart simply couldnt stand any further damage. Vickie Tway – Facilitator
    Katy/West Houston Fibromyalgia & Chronic Pain Support Group Would love the opportunity to hear back from you!

    Reply
  31. Marilyn Avatar
    Marilyn

    My Dr. put me on Savella in October of 2011. Almost immediately my pulse rate went from the low 70’s to over 100 at rest and my blood pressure which has always been very good went way up also. Plus gained 15+ lbs. in a month. I was only on the Savella for 5 weeks but still have all the side effects. My whole body stays swollen and turns red. The fluid retention is steadily getting worse and have now gained 25 lbs. And BP still getting higher. I’ve done nothing but run back and forth to Drs since October and still no answers for anything. Even spent 2 days in the hospital after the Dr. I had an appointment with made me go to the ER because my BP and pulse were so high and I was having chest pain. Hosptial said I didnt have a heart attack and said my stress test they did was fine. But now I’m wondering if the Savella could have done some kind of damage to my heart that didnt show up???

    Reply
  32. Julia Avatar
    Julia

    I am in my 2nd week of my trial pack from my doctor & other than hot flashes which I had already I feel much better. After reading everyone else’s posts & hearing there horrible side effects I am scared to death!!!!! Going to talk to my doctor about coming off of it because I already have enough health problems I defiantly don’t want to add heart problems to it. Thank You everyone for all of your stories they have helped so very much:)

    Reply
  33. juddpaynter Avatar
    juddpaynter

    Hello.
    My name is actually Lily Darcey but my yahoo email is Juddpaynter. I was put on Savella about 3 months ago. Initially, this medication worked well for my fibroidmyalgia, however, then I started to notice shortness of breath, extremely fast heart rate, and some chest pain. I have had chest pain, nausea, headaches, such a loud and fast pounding heart, I could hear it in my ears!!! I decided to go to my doctor for a follow up on Savella. She checked my b/p, which in three months went from hypotensive to hypertensive. My b/p is normally 107/60 or lower, but this time it had shor up to 135/102. Never in my life have I had such a b/p. Also, my pulse is chronically 120. My doctor is weaning me off Savella, so hopefully the racing heart rate and high b/p will come down. I hope I do not suffer heart damage from this. Other side effects are hot flashes, profused sweating, nausea,headaches, and bloodly insomnia!! Maybe lack of sleep is exaserbating all the other symptoms. OK, just thought I would throw in my two cents worth here.

    Reply
  34. beentheredoneit Avatar
    beentheredoneit

    I can relate to your experience. I stopped breathing/heart stopped from taking savella. Caused seizure.I too want action for the negligence of this drug.I was under consistant Dr care during whole time dosage was 100mg 2xs a day for me. Please know you are not alone/wrong to blame Savella and the Dr perscribing it to you.

    Reply
  35. Laura aiello Avatar
    Laura aiello

    I started taking Savella in 2011 for Fibro, I experienced rapid pulse rate, sweating, night sweats, panic attacks, depression, “hot” skin, redness of my face/neck, inability to sleep. However, it did ease my leg pain. In April of 2012 I was rushed to the hospital because I felt like I was having a heart attack, could not catch my breath and my heart was racing. I now have A-Fib, which I am on medication for. Before this medication, like alot of you, I had low blood pressure, NEVER high, and now I developed a heart condition. It took a while to get it under control, I spent 4 days in the hospital, I am now convinced it is the Savella which caused my problem. I am only 41 years old and never had high blood pressure or rapid pulse, none the less a heart condition. I am taking myself off this medication immediately and will deal with the pain.

    Reply
  36. eve Avatar
    eve

    I have had fibro for 22 years my doctor recently in r esponse to my post opperative fibro flare suggested savella or cymballta to get the flare under coNtrol what do you think?

    Reply
  37. Jacq Avatar
    Jacq

    I have been on the titration pack for Savella. Only bothersome effect is the excessive sweating. I already have extra sweating from taking Cymbalta but this is twice as much. Had no trouble going up in dose until day two of the full 50mg twice a day dose. My heart rate went above 125 and stayed there even overnight as I slept. So i skipped the morning dose and my rate came down to 86. Now I am halving the 50s and just going to take 25mg twice a day. I really like the improvement I see…my neck and shoulders are not in constant pain as before, I think more clearly, and I am not totally exhausted all day. I actually get a few things done. My mood is better as I am not as irritable and always gritting my teeth as before. As long as I keep getting improvement at 50mg a day instead of 100, I am going to keep on that schedule. I also take tramadol, lotril (high blood pressure before the new med), mobic, ambien, flexeril, and have stopped taking the Cymbalta because it never did as much to improve things as Savella has and I think it caused a lot of fatigue. Because of the interactions and warnings of many of these meds, I am going to see if I can keep off the Cybalta and the mobic and still function better. Feels nice that for the first time in a long time I see a twinkle of light at the end of the tunnel and I feel I have the chance to get some of myself back šŸ™‚

    Reply
  38. Leslie Avatar
    Leslie

    I am glad to be reading this. I have a feeling that the FDA doesn’t want to hear about complaints against Cymbalta or other drugs similar. I tried to put in a complaint/report and I guess they only want to know about it if you die, have surgery, etc. I just took 1/2 of a pill of Savella yesterday and last night friends were asking me how I got so much sun. I haven’t. I already have heart fluttering (a symptom I have been dealing with for years) and I take a Klonopin for it. My doctor is afraid that I am taking it because she said it’s addictive. Savella, Cymbalta, etc are addictive, so what’s the scoop? I am allergic to NSAID’s and Cymbalta made me feel like I was dying with a sunburn type rash. The emergency room didn’t document this and just said to quit taking it. It seems to me that the doctors are purposely not documenting what they consider uninteresting to them. I am hoping that the specialist I am seeing on Monday will be more old fashioned, caring and will be able to treat me properly. I have more to say, and will, after my appointment on Monday. Take care everyone!

    Reply
  39. taunyacurry@yahoo.com Avatar
    taunyacurry@yahoo.com

    I have been dealing with Fibromyalgia for the past three years. I have been taking seventeen pills a day trying to be able to function to take care of my family. I just recently stopped taking Savella because it was doing nothing for me. I will say that when you are on so many pills at one time, sometimes it kind of hard trying to figure out which one is doing what.

    Reply
  40. Chavella Avatar
    Chavella

    I started on Savella for fibromyalgia, with a low dose, then it was increased to 50 mg. In a very short time my heart was racing and my blood pressure went up significantly, I got really bad headaches and did not feel right. It took approximately over 3 months for my heart to feel normal; however my EKG AFTER Savella show something wrong on my left side of the heart. I believe Savella caused some heart damage. They should take it off the market.

    Reply
  41. Ashlie Avatar
    Ashlie

    Any updates on this information? My doc just prescribed Savella, and I am worried.

    Reply
  42. Tom Lamb Avatar
    Tom Lamb

    Ashlie:
    I have nothing recent to report.
    Anyone else with updates?
    Please know that US FDA advises that you should not stop taking any prescription medication before talking to your doctor.
    I wish you the best in all aspects going forward.
    Tom Lamb

    Reply
  43. butterflyhartmann@yahoo.com Avatar
    butterflyhartmann@yahoo.com

    I was taking savelle with other drugs and it helped mebt my inshurance wont cover it now and my pain is off the chart. I have tried the other drugs and they didnt work. I have migrains anyway but it didnt seem to make them worse

    Reply
  44. Eil Avatar
    Eil

    I’ve recently started with Savella after years of taking Cymbalta. Prior to that I was taking nortryptiline, which caused me to experience one of the very rare side effects. This effect is so rare that when I complained about it my doctor kind of laughed it off, but as time went on I began showing actual physical side effects that couldn’t be ignored. Cymbalta worked somewhat, but after years the symptoms built up to extreme fatigue, weakness, and brain fog, as well as terrible painful burning pain in my calves. All along this ride I gained 30 lbs, causing even more problems.
    I’ve been on Savella just one week. I seamlessly transitioned from the cymbalta, no withdrawals. The first day I was nauseated; vomiting and dizziness. For the next few days I’ve felt queasy and have headaches. Today is the one week point and while unloading groceries I had a sharp pain in my heart. Of course, this scares me and I will call the doctor in the morning. I’m hoping it’s just a coincidence and nothing to worry about. Savella is the end of the line for treatment options for my fibromyalgia.
    After reading all the posts here I’d like to add my opinion. Several posters mentioned they also take Ambien (I do, too). Please look into the possibility of the Ambien as the cause of many of these complications. I’ve learned those who use Ambien for extended periods develop terrible conditions. Because Ambien causes pleasant effects (lovely needed sleep), and many people actually enjoy the sensation, they don’t want to give it up. These long-term use conditions develop very slowly and many don’t associate them with the Ambien. All of these factors combined cause Ambien users to be in denial that it’s what’s causing their trouble.
    1) Ambien creates a pleasant feeling and people enjoy it.
    2) Short term use usually doesn’t cause the negative conditions. Because users have a positive experience on it for long periods before their “new” condition started they don’t associate it with the Ambien. It’s common to hear “Its not the Ambien, because I’ve been taking it for years and never had this problem”.
    3) The negative effects of Ambien creep up on you slowly. During this time many patients start or stop other medications, so they mistake what the Ambien is doing with the new medication.
    4) If, or when, people begin to suspect their new problems may be caused by Ambien they rarely report it to their doctors, or they blame it on something else, or become in denial, because they don’t want to give up their Ambien! They are afraid their doctors will take it away from them!
    Many, many of the issues being blamed on starting or stopping another drug is actually due to long-term use of Ambien! Stop the Ambien (if you think Savella withdrawals are bad, just try getting off Ambien) and many of your problems will clear up.

    Reply
  45. Susan Avatar
    Susan

    I took Savella for about a month in October of 2011. I had severe swelling in my lower legs, feet and hands. My doctor would not believe it was from the Savella because there were no documented cases of this being a side effect. A year and
    about $50,000 in medical bills later, I finally got a doctor to believe me. I have damage to the muscles and tendons in my arms and legs. Two years later, and I am still not back to normal. I have contacted a lawyer, we will see what happens.

    Reply
  46. Thankful for Savella Avatar
    Thankful for Savella

    ISavella was also my last resort! Cymbalta had me in the ER! Ambien is the drug which should be banned! I have never been so out of it as with Ambien!
    Savella has my fibro fog at bay enough for me to read! It also enabled me to begin walking. The exercise helps so much! A healthy diet and weight loss does, too! I pace my activity and can tell that each year I have become more functional again thanks to Savella!
    I really do not think an attorney can fully understand fibro much less Savella! Maybe if some patients tried walking for 10 steps and increased it each day and ate healthy foods, their BP and heart rates would react better. Mine certainly did! It took effort. There are no magic bullets!

    Reply
  47. ronnie Avatar
    ronnie

    i know its been a while since you posted. its 2014. i Wonder if you could tell me if this drug is available in canada?

    Reply
  48. Hopeful Avatar
    Hopeful

    All of you shoud look into hypoglycemia and adrenal fatigue which can cause the same symptoms and is aggrivated by diet, sugar, carbs, and caffene. After having one doc misdiagnose me with FMS, a rhematologist disagree, and a third doc think to look at glucose cortisol and insulin, he found issues with hypoglycemia and adrenal. I have altered my diet and my muscle pain and weakness symptoms are significamtly less.

    Reply
  49. Paula Gregoire Avatar
    Paula Gregoire

    Hello,
    I’m really shocked at the diverse reactions experienced by fibro patients taking savella who posted on this site. I’ve had fibromyalgia for years and years. I’ve tried EVERYTHING! It is possible that my current flareup just subsided on it’s own but I’ve felt better the last couple of weeks than I’ve felt in years!!! I’ve been taking Savella for a couple of weeks now. I hope they won’t take this off the market!

    Reply
  50. renee white Avatar
    renee white

    I strongly suggest you don’t take savella I was on it for a few months I kept having this feeling of a horse galloping on my chest I couldn’t stand it I also felt exhausted.I woke up 1 morning feeling beyond horrible short of breath exhausted chest pain but like a idiot I went to work anyways or should I say I attempted I wrapped my truck around a pole when I blacked out while driving. I had developed whats called Trigeminy and SVT subventricular tachycardia this is a permanent condition I have to take medicine for the rest of my life Ive had to have my heart cardioconverted that is very painful this is all due to taking Savella The FDA has urged Forest to pull this med off the market and they still have not done it how many people have to suffer or die before someone does something about this medication I have 6 kids I cant even enjoy my kids because any activity will screw up my heart

    Reply
  51. Dianne Nelson Avatar
    Dianne Nelson

    Dianne Nelson….
    Hello,
    I have been a fibromyalgia patient since 2004. After being diagnosed, I tried everything to calm down the pain that is associated with this horrific disease. I tried Lyrica, I tried Cymbalta, I tried Neurotin, I tried everything that was offered to me to help with the pain and discomfort and nothing touched it. That’s when my Dr introduced me to Savella. I, like everyone else started off with the triation pack at !2.5 milligrams and worked my way up to the 50 mg tablets twice a day. Granted, the first few days were AWFUL. I experienced some terrible sickness that made me want to stop taking the medication. My heart rate was rapid at times, I did have many hot flashes,but I was having them from time to time anyway. all this lasted for several weeks, but what I noticed was the pain was getting better the first few days. I was not able to eat anything at all for the first month of being on the Savella. I was very sick,but I was not in any pain. For the first time in years, I was finally pain free. I continued with the medication in hopes my body would adjust to the side effects because the good out weighed the bad. I have been taking Savella, successfully now for over two years. I have not gained any weight. I lost 30 pounds in the beginning of this journey and never gained it back. My blood pressure is great, my heart rate is fine, I am pain free, I take 100 mg every morning when I get up. Savella gave me my life back. I do not know what long term effect it has on the body,but I would highly advise anyone to try your best to stick with this medication if you can. It WILL work for you if you give it a chance. I am a 54 year old woman who is living proof

    Reply
  52. Dianne Nelson Avatar
    Dianne Nelson

    I just found this site myself Paula. I put a post on here. I hope it shows up too. I’ve been taking Savella for over two years with AMAZING results !!!

    Reply
  53. Glenda A. Avatar
    Glenda A.

    Hello
    I had started taking Savella in November 2012. I started taking Savella because of back issues that were giving me sharp chest pains. The doctor stated that my back problems were firing nerves in my chest. Took Savella for 3 months and started experincing ringing in the ears. Went back to the doctor and was told that it was not an effect of the medication. I continued to take this medication (.10 dosage once daily) still with the ringing in my ears. In August 2012, I just couldn’t take the ringing, and looked up on the internet “does Savella cause ringing in the ears” and found a list of people claiming that they had the same symptoms. I went back to my primary care doctor and he told me that if it was from the medication, with time, the ringing would disapear.
    I have been to 5 specialists and was told different things initially and each doctor never heard of the drug. I went to the 5th specialist in July 2014 and was then told that I had permanent nerve damage in both ears and now have to wear hearing aids to help with my hearing and to help distract the ringing in my ears.
    If you start experincing the slightest bit of ringing, please stop taking this drug. The damage at that point may be irreversable. In addition to the ringing, the depression this drug causes is almost too much to bear.

    Reply
  54. Emily Jahnke Avatar
    Emily Jahnke

    I have been a Fibro patient for more than 40 years and have tried every thing that is out there. My current doctor gave me Savella and at first I thought I had found the miracle I have been looking for. At first it worked very well, then the problems started after a couple of months. I had such profuse sweating that I would barely need to move and many time s just sitting in a chair the sweat would be running down the middle of my back. I would wake up soaking wet, at that point I was not having the relief from the pain I enjoyed at first. My blood pressure was in the danger level and I had many episodes of nausea. I choseto stop the drug (50 mg 2 times a day). I was lucky because I stopped suddenly and did not have any extreme reactions. I am now having pain all over my body at this time. The only relief I get is Ibuprophen. I am aware of Ibuprophen problems and I am being careful. I do have many other medical problems and find it difficult to balance all of the meds needed for me. Thank you for all of your input on this website and this info has convinced me not to begin reusing this drug.

    Reply
  55. murped76@gmail.com Avatar
    murped76@gmail.com

    Hi, Bonnie,
    I was on Savella a year and a half ago and now had a ‘silent’ heart attack and went through the weakness and fatigue you wrote about. I don’t know of any class action suits files against Forest for this, but I am willing to start one. I didn’t wind up in the hospital, but I sure have suffered and now have disruptive symptoms which wake me up at night. I will be on atenolol for the rest of my life, too. Mary Pedersen, Smyrna, GA

    Reply
  56. vhmccutcheon@yahoo.com Avatar
    vhmccutcheon@yahoo.com

    I hope your doctor is watching your liver function. Thank goodness mine was.

    Reply
  57. Deborah Avatar
    Deborah

    July 2, 2015 – 4 days after starting the triation packet of Savella, my dad’s tongue became severely swollen, his mouth and lips were burning, his entire jaw ached, he was vomiting, and experienced a loose stool. These side effects were not listed in the info material. By day 7, he was taken off of Savella. By day 9 he had extreme urine detention and his kidneys were shutting down. Savella has endangered my dad’s life, and I believe the physician’s assistant was negligent in prescribing it. My dad is not out of danger, and it’s likely the effects will not be reversed. Savella will kill him.

    Reply
  58. Wanda Avatar
    Wanda

    Me too, honey.

    Reply
  59. Renee Conn-White Avatar
    Renee Conn-White

    Savella almost killed me I now have a permanent heart condition I’ve been hospitalized 3 times I’ve had my heart shocked to go back into a normal rhythm 3 Drs said its related to Savella so tell me why is this medication still being prescribed why is it all on the market why is there no lawsuit filed there are several people who have suffered from this medication

    Reply
  60. Carla Avatar
    Carla

    Thank You for this site, sorry for the reason. Thank you All for posting your experiences with Savella, it’s clear I’m going to quit taking it and call for something else tomorrow. I’ve been taking Cymbalta, Lyrica and a few others for my health issues, since Jan. 2012, with good results Except for Cymbalta’s Excessive Sweating, it’s Horrible. Living in TX w/high summer temps, I asked my Rheumy 2 weeks ago to try something else. I started the Savella blister pack, knowing the Cymbalta withdrawal would be Epic. Still having w/d symptoms, don’t know how long those will last. I’m sweating even More with Savella and shortness of breath upon exertion. I was misdiagnosed last year with Bell’s Palsy, but, it was Ramsay Hunt Syndrome, (Shingles in my ear), which caused Even More fatigue and severe shortness of breath for 6 months. I was making good headway until the Savella. It’s just taken my breath away. I hope all of you best wishes in being better off Savella.

    Reply
  61. Mary Avatar
    Mary

    I agree.. I’ve been taking Savella for 6 years and feel 100% better. I think most of the side effects are caused from mixing medications. I take 50mg morning and night and Buspar morning and night. I sure hope they don’t take it off the market. It was like a miracle answer for me.

    Reply
  62. Figment Avatar
    Figment

    I’ve been on Savella (after weaning off Cymbalta which stopped working and Amitriptyline which stopped working) for about 10 months now. It has helped me immensely with FMS pain. I started the titration pack but my dr had me titrate up more slowly than recommended. I did have minor nausea at first but have to say, other than an increased heart rate, the results have been positive. I do have increases sweating which is a pain but the FMS relief is worth it IMHO. I think too that many have negative results based on mixing various meds which could cause further complications. This Savella to me is preferable to the Cymbalta (was taking 90mg/day) because taking 50mg/twice daily as a pill, I can always break the pill and decrease the dosage if needed rather than dealing with Cymbalta which is a capsule and is impossible to titrate down past the 30mg dose. I plan to stay on it as long as it helps. I do notice blurred vision though and wonder if this is a permanent side effect.

    Reply
  63. Cynthia Avatar
    Cynthia

    I am surprised to hear this news!! I have been taking Savella for over a year. I got my life back because of this medication! I am not symptom free, but I am back to work and can function much much better!!

    Reply
  64. Cheryl Avatar
    Cheryl

    I have had fibro for 25 years.The first 15 years I didn’t know that’s what I had. In 2006 I was in a horrible car accident that sent me into full blown fibro. I was bedridden for a few years and tried everything, of which nothing worked … until I met Savella which changed my life. I had severe pain,IBS, RLS, fibro fog, vertigo, severe pain, short term memory issues, increased migrains, needle sensation in my hands and feet, violent 6-8 hour vomiting episodes, nausea, loss of smell, eye sight, taste and hearing. Did I say severe pain? I couldn’t lay down, sit or stand without being in agony. Started using a cane then Walker and graduated to a power wheelchair. I couldn’t sleep, but then again I couldn’t stay awake. Was on a bazillion meds including hard narcotics.
    Savella relieved almost ALL my symptoms, and the symptoms that didn’t go away completely, we’re minimized. I got most of my life back, but not without losing a lot. My marriage suffered and ended in divorce. I lost a lot of friends. My daughter’s and my relationship suffered deeply, and with a lot of resentment.
    I’ve read all the comments on this page and how people’s BP and HR climbed through the roof … well, mine went down. Before savella, I had very uncontrolled BP which reached 240/120 …that’s no lie! With savella, I have to monitor it closely because it goes way to low at times.
    I honestly don’t think I’d still be here on earth if it weren’t for savella. I especially know that now because I was laid off from my job and lost my insurance.I am now on state Medicaid which won’t cover my savella. I’ve been off of it for a month now and am almost bedridden again. I will fight to the end, to get back on it. I was searching for coupons when I stumbled across this site. I agree with a few people above …
    #1-give it a chance to work unless you are allergic to it or do have severe heart issues.
    #2-consider the possibilities of other drugs causing the adverse issues.
    #3-side effects go away for the most part … give it time.
    #4-we, as fibro patients, have a sensitivity to adding, deleting and changing medications. Therefore it should be done slowly over time. With me, the slightest changes cause vomiting, rise in BP & HR, and stomach pains.
    I hope everyone finds what works for them. Just because it doesn’t work for some people, doesn’t mean it’s not going to work for others.
    God bless and be well!
    Cheryl

    Reply
  65. Sara Avatar
    Sara

    To All,
    I have read this article/most of the comments & i don’t believe there’s a case here.
    I have FM (mom does too) & I have recently started Savella. Mom couldnt take it bc she’s highly allergic to most meds & has MDD.
    IF I have a bad reaction to this med, I wont blame Savella. I will accept that I had a reaction BECAUSE I have FM.
    This case is, lack of education on FM & Savella, from both patient & provider.
    I found a VERY HELPFUL booklet online about FM, if interested. Its by Dr. Edelberg (WholeHealth Chicago), called:
    “Physician’s Guide to Fibromyalgia”.
    It can even be printed & given to providers, since so many Dr.’s, know so little about this disorder. I encourage anyone to look it up.
    Medication sensitivity, is a symptom of FM. As well as, drug, food & environmental allergies. Meaning, FM sufferers are more likely to have a drug reaction to ANY medication, not just Savella. It doesnt make the drug bad, its just trickier to treat us, bc we are so sensitive to everything.
    Also, Im seeing ALOT of comments saying, “I was taking anti-depressants w/this med”, or, “I have MDD & it made it worse”. I read ALL of the info that came w/this med. & I believe it was only meant for mentally healthy ppl.
    I say this bc, the warnings specifically state that it shouldnt be given to anyone on MAOI’s/anti-depressants, its “pick 1, or the other” & if the switch is made, you’re supposed to wait 2 wks, to make sure everything has cleared your system before starting this med.
    Its on the DOCTOR, to decide if you can still remain stable off your psych meds, or if you truly need them. But, mixing is NOT advised & there’s a LONG section, repeating this in the med instructions. If this med can cause mood changes/suicidal thoughts in happy ppl, then its up to the provider, to assess the risks in someone thats already struggling w/these issues.
    Like every med, its a 50/50 chance to work, do nothing, or cause problems. Everyone’s different. I KNOW its hard suffering w/FM. All we can do is, educate ourselves, dont give up & keep trying until we find something that works for us. Most importantly, Dont give up hope! Relief IS out there, its just trial & error, until you find it. I hope this post helps someone out there. šŸ™‚

    Reply
  66. Carol Crottie Avatar
    Carol Crottie

    I have been diagnosed with FM for nearly seven years. I have been in agony for most of this time. I tried several medication prescribed by my Dr. Nothing worked until Savella! Savella isn’t not without side effects. I especially am affected by cold sweats, hot sweats, and insomnia. However, the God awful all over pain is GONE! I am still on low dose, the higher dose made me feel very light headed and things would “go black” if I stood up quickly. Of course I will continue to be monitored by my Dr. This is the first time in seven years that I have had two good days in a row. I have had a week free of FM pain. I turned 70 yesterday and Savella has given me my life back. I was in so much pain for so long that I didn’t care if I died! Now with Savella, I have hope and am planning a cross country adventure! Thank God and Savella!

    Reply
  67. Lauren Avatar
    Lauren

    Savella is the best thing that has happened to me!! Iv had headaches daily since I was 15. I wasn’t diagnosed with fibromyalgia until last year (November 2015) my dr chose savella for me. We had no clue why I was having headaches. The day I started savella, they stopped COMPLETELY!! I rarely have headaches now. Very rarely. But it has changed me completely. I was practically bed bound before savella. So tired all the time. Taking adderall to help with energy.. But still so tired. I started out on 25mg twice a day. It made me sick at first but has gradually gotten better to practically no nausea anymore. After going up to 50mg twice daily I noticed I was so tired right after I took it. well being spring time I have horrible allergies. I took an Allegra one day and it was the worst decision I have ever made. It wiped all savella from my system.. I was throwing up for a full 24 hours anything I swallowed even spit! At midnight the pain in my legs and hips started. It was my hot spots radiating. But it was the most painful in the world. All of the hot spots were hurting at the same time and radiating. It was so bad I was screaming and crying all night. My grandma brought me some Tylenol 3 to help with pain. It’s was right at the 24 hour mark from when I took the Allegra when she brought some medicine. I had started feeling better. But I had felt like all of the savella I had built up was just gone. I felt miserable for days. I was right back to feeling where I was before savella. I went to the dr and he said well he’s never heard of that. But let’s go up to 100mg twice daily and that the more you have in your system the better it works. And I can say since I have been taking 100 twice daily I feel unstoppable. So much better so much energy. But do not ever take allergy medication with Savella.

    Reply
  68. Barbara Pirtle Avatar
    Barbara Pirtle

    I have been taking Savella since the beginning. I also have been taking Lexapro for depression. My mail order company, Caremark, says I can no longer take both. Do you know why??

    Reply
  69. Amber Avatar
    Amber

    I was on savella for a little over a month. I suffered from multiple side effects, insomnia, nausea and fatigue which weren’t so bothersome. When I went on vacation my feet swelled so bad I couldn’t even walk , my heart kept racing like it was going to beat out of my chest and the shortness of breath was unbelievable. When arriving home I got right into the doctor i was sent straight to the ER and admitted for all my electrolytes being low and heart palpitations all the cause of SAVELLA . I am now weaning of the med, the withdrawals are horrible …. Pain everywhere, diarrhea, nausea, sleeping all day , headaches and loss of memory. Savella did help with my fibromyalgia symptoms , but the health risk definitely wasn’t work all that I have been through! Tread lightly when it comes to trying this med.

    Reply
  70. Antoinette Avatar
    Antoinette

    They are worried about you getting to much serotonin which can be very bad!!

    Reply
  71. Antoinette Avatar
    Antoinette

    Have you looked into Low Dose Naltrexone? Check it out!!

    Reply
  72. Kim Reed Avatar
    Kim Reed

    Very good information. You sound like a patient who educates herself. I have been on Savella for seven years for migraine, and at the time it was the first drug to provide some relief. However, at an inpatient clinic, my neurologist took me from 250 mg to 100 mg in three days and wanted to continue down. But I knew something went wrong. I have been very ill for two months, shortness of breath and extreme body pain and weakness, barely able to walk. Have seen a cardiologist, pulmonologist, neurologist, GP, and ER docs. While I believe there is more going on, I have orthostatic tachycardia, I am now thinking, the Savella withdrawal could have thrown my body into this situation. You MUST do your own research. I may not be correct, but my doctors have no idea what is going on. I will investigate this per all of your comments. Thank you so much.

    Reply
  73. Karen Roby Avatar
    Karen Roby

    I agree nothing else helped my fibromyalgia .right now my pain is so bad it feels like a butcher sharpening knives on a leather strap Every muscle in my body feels like that strap with the knife going up and down but not cutting just scraping it’s been this way for days I have an emergency appt. I have been taking it since 2009 with the sample packs from my DR. at the time . I just started with this Dr. and pray she gives it to me tomorrow.
    Karen R.
    12/5/2016 2:20 A.M.

    Reply
  74. Karen Roby Avatar
    Karen Roby

    thank you so much

    Reply
  75. Kimberly Shively Avatar
    Kimberly Shively

    I take 100 mg Savella and I have for over a year, it has helped me tremendously with my fibromyalgia pain and the only side effect I get from it is being a little bit tired, I take a 30 minute nap and I’m fine. However Cymbalta and LYRICA both almost killed me with different side effects. The Cymbalta made me quit breathing in my sleep on many occasions , at first it was presenting itself thru a nightmare everytime I fell asleep after taking it, my dream was that I was sleeping and couldn’t breathe and I couldn’t wake myself up, Well it was no dream, it was real and I know this because my husband had to wake me because I was flailing my arms around and I wasn’t breathing. This happened on SEVERAL occasions, then we realized it started when I started taking the medication.
    The LYRICA gave me SEVERE HYPOGLYCEMIA, as soon as I a started taking the LYRICA my blood sugar started dropping into the 20’s, when I told my GP about it he didn’t believe me, then on a visit about 2 months later ( at this time my blood sugar was dropping about 8 times a day- and I gained 70lbs because of eating trying to keep my blood sugar higher) so, I was sitting in the room with my GP and I told him 3 different times that my blood sugar was diving and he wasn’t paying attention at first, when he finally turned around I was at the point that I couldn’t speak and I guess I looked pretty bad cuz he called in his nurse to check my blood sugar and it was 27, they all had to rush around to get stuff to raise my BS. After we got it up to 68 the Dr told me that he just figured my BS monitor wasn’t working properly, cuz normally if someone BS dives that low they go into a coma. So Thank God I had a guardian angel watching over me. SO LEAVE THE SAVELLA ALONE, ITS THE ONLY THING THAT WORKS FOR ME.
    EVERYBODY IS DIFFERENT AND REACTS TO MEDICATIONS DIFFERENTLY, WHAT IF THEY TOOK THE OTHER 2 medications off the market as well? Then everybody would be screwed. Everybody takes these and all medications by free will, it’s your responsibility to make sure the side effects listed are watched for and reported to our Drs. The side effects I had with both medications had a less than 1% chance of happening and wasn’t listed on any print outs. It took many hours on the computer to find the side effects I had. So be responsible for your own decisions and don’t just blame the medicine and try to take it away from the people out there that it does help.

    Reply
  76. jennifer Avatar
    jennifer

    While Savella may be of great benefit to some, it is quite dangerous for others. I do believe it should be available to those whom it helps without serious adverse affects, however, I also believe there should be through and adequate information regarding possible adverse affects.
    I had a host of side effects from Savella. Most notably, I went into a hypertensive crisis while taking this medication. I wouldn’t have known had I not checked my blood pressure while at the pharmacy. I had a horrible migraine for days and upon speaking to my pharmacist who knew I was taking Savella, she suggested I check my blood pressure. I went to the emergency room immediately, and was treated for the hypertensive crisis.
    I stopped taking the Savella, and within days, all the side effects disappeared. Upon discontinuing, I was then able to note some side effects I was having that I hadn’t even realized were occurring on account of the Savella until I discontinued it. Among these were a constant, low-grade bladder infection that would no go away with antibiotics, significantly increased pain levels and pain in areas I hadn’t previously had problems with pain, a change in mood from optimistic to pessimistic, disliking everything and everyone, and an inability to experience any positive emotions whatsoever.
    Unfortunately, physicians do not do their part in warning patients about possible adverse effects, and the information that comes with the prescription is often lacking in detail and thoroughness. I believe Savella should have a sort of “Black Box” warning in regards to it’s potential to cause a hypertensive crisis, and also have urinary tract issues indicated in the “side effects”.

    Reply
  77. Sick and Tired Avatar
    Sick and Tired

    I’ve been on Savella for less than a week, and already the side effects have been massively debilitating. I’ve been sleeping 12-18 hours per day with tremendous fatigue, crippling bloating where I’m curled up in a ball crying, increased body pain, nausea, difficulty swallowing, numbness in my hands and feet, and my depression is deeper than ever. I’m sick of Big Pharma and doctors putting us on expensive meds that not only don’t help, but often make us sicker. Ironically, medical marijuana gives me tremendous relief from pain, depression, and insomnia, but Big Pharma is lobbying for more federal enforcement. I’m immediately stopping the Savella because I can’t function. I’ve just lost four days of my life, barely out of bed.
    I’m going to go off all meds except Wellbutrin and Levothyroxine.

    Reply
  78. Merit Avatar
    Merit

    Hi…I started Savella for the first time about 2 months ago and had the same symptoms as you…it’s really hard at the beginning but now I don’t feel the hot flashes any more, just a little bit of dizziness the first half an hour after take the pill and some nausea but then it goes away….believe for me being relieved from that pain all over my body, the muscle stiffness in the mornings and the burning of my skin it’s a dream come true…

    Reply
  79. Tammy L Klingensmith Avatar
    Tammy L Klingensmith

    I have been on savella for about a year now. Just in the past 2 months my side effects have gotten so bad….now my liver is swollen, my stomach is swelling up, I’m having trouble with breathing right after short walks, my heart rate and bp are ridiculously high. I’m wearing myself off this before it kills me…..I’m quite sure it already has done irreversible damage.
    Prayer and gentle hugs to all who have fibromyalgia, and also now are suffering from this drug.

    Reply
  80. Lara Avatar
    Lara

    According to my 3 treating Doctors (2 in the hospital and my PCP at one of the country’s leading medical centers), Savella caused me to have a case of Acute Pancreatitis so severe I had an NSTEMI heart attack. Not sure yet how bad the heart damage was, but am scheduled for a bunch of further tests.

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  81. Angela Hudson Avatar
    Angela Hudson

    Sometimes, I feel people see what the side effects are and then all of a sudden, what do ya know, hey that’s what’s going on with me! (Hypochondria) Anyways, 1. I’m a migraine sufferer. 2. I have FM. 3. I have tried Lyrica and other meds, they made me mean and depressed, AND my pain was so bad Lyrica couldn’t touch it. Doc introduced me to Savella 2 months ago. NO PAIN WHATSOEVER. Yes, I have the hot flashes. Yes, I swell. But you know what, I had all that too with the other medications only worse! Yes, at first, I was dizzy. But I blame it on how fast the Doc wanted me to increase so I slowed it down and that checked the dizzy spells. When I felt a little pain creeping in, I increased by half staying on top of it. It worked! No, I’ve not had issues with high blood pressure or my heart. Yes, I’ve had issues with fatigue but that’s part of the disease not the medication. To be honest, I’d rather have the hot flashes and swelling (which is checked by meloxicam-an anti – inflammatory) than to be in CONSTANT, EXCRUCIATING pain every single day! #lovemycombinationofpainrelief #geteducatedaboutthedisease #fmcausesmanyotherissuesaswell #itsnotthemedicationbutthedisease #blameyourhealthnotthemeds #stopselfdiagnosing

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  82. Ellie Avatar
    Ellie

    Hey Karen and fellow fibromyalgia sufferers,
    Iā€™ve had fibromyalgia for about 29 years now. Lyrica helped me, but eventually began affecting my vision so I had to get off of it. I just wanted to let you all know something that has helped me more than any med ever has…reduction of pain by about 80%!! When I eat just fruits and vegetables within a few days my pain almost completely goes away!! No muscle knots, tightness, and very little pain!! Iā€™m in the process of seeing which foods I can add in, taking only one item at a time, ie. dairy, carbs (not from veggies), white meats, fish, red meat, sweets, etc. Iā€™ve never been vegan and am hoping I can add some of these foods, but it has been shockingly life changing for me!!! šŸ˜³šŸ˜³šŸ˜³šŸ˜ƒ
    ~Ellie

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  83. M. Hebert Avatar
    M. Hebert

    After suffering with FM for years and trying other medications which did not help me and only gave me side effects, my physician put me on Savella. Savella has helped me and has given me my life back. I have never had side effects from Savella in which I was pleasantly surprised and thankful. I believe Savella is a wonderful drug for FM if taken as directed. Also, I believe patients should read ALL the Medication Guide that they receive when they get there prescription. The guide tells of the side effects, risk and much safety information about taking Savella. Patients should not blame (try to sue)the manufacturer of the drug,the FDA or anyone if they have adverse effects, because the information is not hidden , they just have to read it and then they are able to make an informed decision, which is their decision, not anyone elses.

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  84. Nikki Avatar
    Nikki

    The same for me!!! Savella has been a lifesaver. Cimbalta and Lyrica gave me brain zaps and a siezure. I have never had any bad side effects on Savella. My Medi Cal wont cover it however. Please make this drug more affordable and in more use to people like me.

    Reply
  85. J Wallace Avatar
    J Wallace

    Savella has been a godsend! Ive tried all the other treatments for Fibromyalgia, but had to use opioids to dull the pain. I been on Savella for almost 3 years and have not had to use a single opioid pain med since! If I have fibro pain, it’s minor and treatable with Tylenol. I did have issues when I was titrating in the beginning, but those side effects disappeared. I now am living a functional life, finished school and work a full-time job. I could not have done this without Savella!

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  86. TammyB Avatar
    TammyB

    I used to use their website and filed for patient assistance program. After a while they didn’t seem to want to work with me anymore and so i gave up. But I got assistance for almost 2 years.
    https://www.allergan.com/responsibility/patient-resources/patient-assistance-programs/savella

    Reply
  87. Susan Avatar
    Susan

    Are you a fibromyalgia sufferer or a traumatic accident victim?

    Reply
  88. Patti Avatar
    Patti

    Sulfa antibiotics almost killed me. If I take even one and I am not near medical help, I will die. Why is sulfa still being prescribed?
    Because it helps 99% of the people who do take it .If they pulled every medicine that people were affected bad by, then we would have no medicine to take at all.

    Reply
  89. Patti Avatar
    Patti

    I live SavellaS! with Savella, my heart rate is slightly elevated and I have dry mouth. I will take those two side effects any day over daily crippling pain.

    Reply
  90. Jan Avatar
    Jan

    Please make sure to check your blood pressure everyday. Glad you like the drug. I had a stoke with HBP almost died now I also have CKD and blind in in one eye.

    Reply
  91. sue Avatar
    sue

    I have FM and am allergic to the other medications. Without Savella life would be unbearable.

    Reply
  92. Jerold Crawford Avatar
    Jerold Crawford

    My experience with Savella has been nothing short of miraculous. I have had persistent pain for years. I am an RN and saw a sample pack of Savella which was a starter pack for a patient. Since I did not know what Savella was, I read up on it before I administered it to my patient and that lead me to read up on fibromyalgia. I realized that what I was probably was dealing with was fibromyalgia, I would also have depression, days when I just could not concentrate (fibro fog) and unrelenting issues with Restless legs and arm syndrome for about 30 years. I went to my physician and asked her it this is what I was dealing with. She assured me that I could not have it since I was a man, but she tested me with all the “trigger points” ( think that is the right word. I cam back strongly positive for this indicator. When she combined it with the other symptoms like the fogginess and the restless legs and arms, she stated she was wrong and that I did indeed appear to have it.
    They started me on Savella and within a week, the pain was so much less that I actually cried when I was telling a colleague about it and how much better I felt. I never knew how much I was hurting until it stopped. I have been on it for about 10 years and feel wonderful. I have not had any of the toxic symptoms that people have described. Lyrica did help a bit with the peripheral neuropathy but noto with the other pain. I could not tolerate the Cymbalta as it increased my restless legs and arm syndrome to almost a 24/7 state which subsided once I cam off of it,
    CVS/Caremark has told me that I will need to pay more for it and it is well worth it to me. I am sorry that others have had so many problems with it. I will, of course, be on guard for any sign of problems (fore-warned is fore-armed), but there are some of us that this drug has really helped.
    Thanks for letting me put my two-cents worth out there.
    Jerold Crawford; Citrus Park, FL

    Reply
  93. Gwen Avatar
    Gwen

    What does Sulfa have to do with Savella?

    Reply
  94. Stacy Avatar
    Stacy

    I thot it was amazing at first but then I started with palpitations, headaches, high blood pressure to just name a few. Now Iā€™m in the process of detoxing from another medication! Side effects are the worse part!

    Reply
  95. Natalia Cercone Avatar
    Natalia Cercone

    I have read that Savella (SNRIs) and Lexapro (SSRIs) interact and may create a severe side effect.

    Reply
  96. Rachel Avatar
    Rachel

    It was an analogy.

    Reply
  97. Rachel Avatar
    Rachel

    I know you post this in 2018, but i was wanting to know if this diet continued to work and what more you found out. email: rachelm2484@hotmail.com

    Reply
  98. Wanda Bowman Avatar
    Wanda Bowman

    Horrific for me personally

    Reply
  99. Noah D Avatar
    Noah D

    Thank you so much Bonnie. I found your testimony very useful. God bless you and your family and godspeed to your healing process šŸ™‚

    Reply
  100. Carolyn Wilson Avatar
    Carolyn Wilson

    I started Savella September 17,2021.I took the starter pack. I then started the 100mg after finishing the pack. I started vomiting several times a day. My stomach was constantly upset. No one told me about side effects and yes,I should have read the side effects.
    I have several other health problems. One being sciatica and degenerative disc disease. At the time I started this medication I was in constant pain from my tailbone and lower back. My doctor told me that bone was rubbing on bone. So,I was not thinking about anything but the pain.
    I stopped taking Savella about 3 weeks ago and my stomach is still upset. I have a very hard time eating much because I feel nauseous afterwards.
    Doctor told me to take prilosec 1 pill twice a day for 10 days. I’ve been taking prilosec for 6 days now. My stomach is still upset. I’m hoping it will stop soon because I can not take this much longer.

    Reply
  101. J.G. Avatar
    J.G.

    Just because a few people had negative side effects, does not mean everyone will.just like any other medication, some can be allergic and some will not, some meds will work for some people, and others not so much. Why take a medication off the market for a few people when there are numerous people it helps? That is quite a selfish statement.

    Reply

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