Savella for Fibromyalgia: Have You Tried It?
Friday June 12, 2009
The newest FDA-approved fibromyalgia drug, Savella (milnacipran), has been on the market for more than a month now, and I'm anxious to hear how it's working for people. Have you tried it? How is it working? Take the poll and leave a comment below to let us know!
If you're not familiar with Savella, it's an SNRI like Cymbalta (duloxetine), except that it boosts norepinephrine more than serotonin. It's been approved in several countries for depression for several years now, and it appears to have fewer side effects than most drugs in its class.
Comments
Chronic pain is very severe and this affects people’s life, long known to people who suffered from a strange disease, were strong back pains, which were intense and not let them work, as was what they said were the doctor and he prescribed oxycodone for pain, but knew it was a very powerful medicine, and moreover, anxiolytics, and worry that they were doing things that previously did not like eating too much, smoking, etc, and read in findrxonline that this drug is well and that we must be very careful with their use, and everything must be under medical prescription.
I’m still on Lyrica and I also take some Tylenol every day for my pain. I just finished weaning myself off Cymbalta which has too many side effects for me. So, I’m not really anxious to try another antidepressant (I’ve tried several) right now.
I’m more interested in other types of drugs being approved for fibromyalgia: Ampligen and Xyrem for instance.
Neither Ampligen nor Xyrem are currently approved for fibromyalgia.
yes, started in march 09. it helps, still get a lot of pain when i over do it, but my daily quality of life is improved. side effects, sweating, and as they call it, difficulty passing urine. (so far, trade off for a better less bad day is fair). some days the side effects are worse than others, but mood, and daily life are improved on savella. (had to stay up at 100mg twice daily to retain the benifits). good luck all… hang in there. Bob.
I really don’t see the point of these drugs. My muscles are completely stretched taught. If I stretch, my body sounds like a tree splitting apart. The pain comes from my muscles and fascia. It comes from my hip flexors. All of my trigger points are large knots of pain. How is an anti-depressant supposed to make that go away? I have tried a few of these “treatments” with absolutely no change in my pain threshold but an entire host of ill-effects such as personality changes, extreme weight gain, suicidal thoughts, the works.
What does help are narcotics. Even the smallest amount of tramadol will at least reduce the pain by a fraction. These anti-depressants don’t even dent that pain no matter how much I take. If I take stronger narcotics, the pain goes away more.
My pain is severe and I have been approved to take kadian. I tried it for a month. It did the most help. But I don’t feel comfortable taking it. I currently take tramadol and soma. This leaves me unable to do as much and keeps me in pain. But the pain is not so bad that I feel trapped by it.
I know this is not a story about sevella. But I strongly feel that these drugs are doing us a great deal of harm. I have known more than a few people who suffered hell trying to stop medications like Cymbalta.
I just don’t see the point in these drugs when we already have pain medication that works for most of us. The risks of these drugs seem enormous compared to safe use of opiates.
Started Savella for fibro but also have chronic fatigue. Sleeping more than 10 hours daytime and all night. Not sure why??
I’ve been taking Savella for 3 weeks now. The knots in my muscles have relaxed and are almost gone. It does nothing as far as an antidepressant, but it does help the pain as long as I don’t over do it. I’ve been able to cut my vicodin use in half. For me it has helped so far.
A,
I am looking at Savella and waiting to hear more. Did Cymbalta for 2 years, bad side effects. No problem stopping the drug.
Dr. backed me off in a 2 week period. Seeing a TCM/Western Chineese MD/professor/acupucturist. She put me on Mood Food [health food store] high in 5HTP.
I am not depressed acually best I have been in years. She also put me on Vine Essence[a Chineese herb] along with weekly acu. and did a hair analisis. I am now on a regimine of supplements. My skin has improved , dark circles under eyes and wrinles are disapearing.
I am cutting back on Oxycodone now as so much is not needed.
Most of all,I want to say, THANK YOU for your hard work and dedication to this site.
You to have FMS and a small child.
We all should step back and give you a round of applause.
Judy
I was on Savella a couple of years ago for a clinical trial study. It didn’t do anything for me. I am now trying it again – but so far not feeling any different after one week. I tried Cymbalta a couple years ago and it worked great for one month – then pain started to come right back.
My doctor gave me a trial pack and after two days I noticed I had a tremendous amount of energy and my migraines are gone. I took Vioxx for years due to arthritis and fibromyalgia, until they took it off the market. Savella is the next best thing to it. As far as other meds, I tried Cymbalta and had allergic reactions since I’m allergic to ragweed. Lyrica caused severe migraines,blurred vision, dry mouth/throat, night leg cramps, brain fog and made driving a car practically impossible. After taking Savella for a few weeks and adjusting the dosage, I am nearly pain free.
Am on my second trial pack of Savela, first time I thought I had a virus, nausea, tired, sweating at night and day. On it again and same thing, so I know it wasn’t a virus the first time. Am frustrated because Lyrica worked for me, but insurance company won’t approve.
Red tape…be gone!
I have been on Savella for 3 weeks now and am feeling some relief. My doctor wanted me to come off of Lyrica all together to see if the Savella would “take over” for the Lyrica, but that didn’t work. I have managed to cut my daily dosage of Lyrica in half which cuts the side effects as well! As far as side effects of Savella, I’ve only noticed that I was a bit moody the first week of the full dose, but this last week has been so much better. I’m really hoping that Dr & I are close to a good drug combo.
It sounds like this drug is helping alot of people!!!! Don’t be afraid to take it just because it works like an anti-depressant.
I have been on Savella ever since it has been approved for use. I don’t have the pain like i once did. I do notice night sweats and daily sweats, but will continue using it since the pain is so much better. I am so happy to finally find something that helps. TY for all the work you do for fibro.
I have been considering asking about this but I had such a bad time w/cymbalta & didn’t realize that the side effects were so bad until I realized one day that I had lost my desire for life & just about anything else. I didn’t have any trouble stopping it but now am a little “scared” of starting a new drug since it took 2 yrs on cymbalta for me to realize how bad I had gotten while I was still in alot of pain. These good comments make it sound like it is helping alot of people tho so it is something I may talk to my doc about next time I go in & see what she thinks.
I have just been on this for 3 days , this is after having a 5th back surgery, in 14 yrs. Have been diagnoised with FMS since 1996, Lyrica was not good, but after 3 days the hypersensitivity I had in my back is GONE. I can where pants again. Move more freely then I had been. This is a God sent medication.
THANKS for continuing to find medication to help those of us who suffer in constant pain.
Cher’e
From some comments, it seems that Cymbalta has some undesireable side effects. What are they? Is sweating one of them? I take Effexor now and dread summer time because of the sweating! Does the new drug that raises norepinephrine levels also cause sweating and sleeplessness?
I have been on Savella almost three weeks now and noticed a difference in my pain & muscles. More of a difference than anything else I have ever tried. I tried Cymbalta for about six months or so and did not notice any difference the side effects were terrible and coming off of it were terrible. I tried Lyrica for about two months it did nothing for me plus my insurance would not pay. My doctor over the past four years has tried so many different meds on me and nothing really works or there are bad side effects. Everybody is differnt. So far Savella has been the best but different times of the year I am worse so time will tell and so far no side effects except a slight more tired, and it does not act like an antidepressant which I don’t need anyway just daily muscle and pain relief. I am crossing my fingers because all that I have had is bad luck with meds. Good Luck to everyone else!!!!
I have been using Savella for 3 weeks now, with little or no improvement in my FMS/CFS symptoms…so disappointing! Cymbalta and Lyrica were not effective for me either. My Dr. finally gave me a prescription for Vicodin to help with pain. That has not helped either. (Does not even take the edge off) I’m back taking more OTC Excedrin, the only thing that helps me, but is very bad for my stomach (acid reflux)although the Prilosec helps w/that. I survive on Mirapex for RLS, Prilosec, and Excedrin. I am so disappointed that the Savella hasn’t helped. Will stay on it a little longer to see if it changes.
Susiedal,
Here’s information on Savella & Cymbalta that includes lists of side effects: Savella, Cymbalta.
I have been on Savella for about 10 days. I am ramping up the dosage slower than the trial pack says. My dr agrees I should because I have had a lot of trouble with disabling sleepiness when trying other meds. I’m up to 25mg each morning now. I feel more energetic and less tired than I have in years. Pain has never been my big issue. I have RA and scoliosis as well as FM, so I am on longterm maintenance NSAIDs. Pain in trigger points has not been helped by the other pain meds. I just live with it, although massage helps. Savella seems to be starting to diminish trigger point pain, but I can’t be sure till I get up to higher dosage or longer use duration. Side effects have been limited to mild queasiness and transient headaches. Queasiness is helped by not having an empty stomach and by drinking salty things like V8. The improvement in my energy level is enough that I am willing to deal with the nausea. If I am this improved on 1/4 of the normal dose, I’m not sure I even need to go up to the full dose.
I was on the ramped Savella for 7 days. My pain diminished intensly. I was tired, but with Fibro, I’m always tired. I had, and still have some weird skin-creepy feelings. But the reason I had to stop taking it is I passed out twice. My blood sugar and blood pressure dropped. By the time I made it to the Dr’s my blood sugar was 53 and blood pressure was 78/50. Today blood sugar is up to 84 and bp is 90/60. These drops caused my heart to go bananas too. The Dr isn’t 100% sure it’s the Savella and I hope to try it again in the future because I had virtually no pain by day 4.
Anyone else have this problem?
I am trying Savella now.
It helps with pain but is making me very tired. Sleepy, don’t want to move kind of tired.
Lyrica with Celebrex brings my pain from a 9 to a 2. Cymbalta brought it to a 0 to 1, but made me paranoid and my anxiety went through the roof.
I tried narcotics with nurontin and that only brought my pain to a 3.
The Co-ox 2 inhibitors like vioxx and Celebrex, just plain work. Lyrica helps with the muscles. Add the SNRI’s if you can stand them and you’re home free.
I have transitioned from 120 of cymbalta to 100 of Savella over the past 2 weeks. It has helped very much for the pain but I am also experiencing profuse sweating night and day. It has helped my energy level almost too much; if anything I’m feeling manic and my usually low normal blood pressure has gone up. One good thing is that it has totally taken away my food cravings!! I have to remember to eat and lost about 10 pounds since I started. Problem— Medicare RX will not lower it from Tier 3 to Tier 2. I am appealing.
I have been on Savella for fibro for 2 1/2 weeks-just got to the full dose. I agree the muscle pain is less and although I had stomach upset the first week that is gone now. At this point my main negative side effect is severe sweating-I am soaking wet all the time. I have tried all the other drugs and had much worse side effects and little to no relief so at this point this one is better. I also have psoriatic and osteo arthritis and some other tings and I take large doses of prescription ibubrofen.
I have been taking Savella for almost two weeks now. Since I have been on it, I have been experiencing more generalized anxiety and heart palpitations. My blood pressure has also been up and down. Sometimes it has been 125/91 and other times at 100/69. My pulse is also up and down. It has been up to as high as 110 while at rest. I have had anxiety and depression for several years now, and it appears that Savella is making the anxiety worse instead of better–which is what my doctor had hoped. I also seem to have problems urinating sometimes, which Savella can cause. I am not sure whether I should start dropping the dose and prepare to get off the medication or not. I have tried everything and nothing works. All the antidepressants just make me worse.
The one antidepressant that did seem to work somewhat was Lexapro, but I had to stop it due to it causing my prostate to tightening up where I couldn’t use the bathroom. The bad thing is that I am only 26, so I shouldn’t even have prostate problems.
I may give the Savella a few more days, but if it continues to cause me problems I will get off it. I have just about given up hope for ever finding a drug to help with my fibromyalgia pain. My doctor never offers to put me on more powerful pain meds. I know he doesn’t want me to get addicted to them, but sometimes you just have to take what you can take in order to be able to function. I haven’t been able to have a real life for the last 7 years. I stay mostly at home due to my fibromyalgia pain and depression/anxiety. It has become a hassle just to leave the house.
I would also be interested to know if anyone on here experiences the veins and arteries dilating or popping up under their skin with fibromyalgia. I seem to experience this whenever I get hot or really stressed. It feels like they are going to pop out of my skin. It is very painful. My doctor can’t give me a good explanation as to why it happens. I just hope that one day there will be something that I can find to end this horrible fatigue and pain! Good luck to everyone on finding a treatment.
I have been on it for 3 weeks and all i can say is so far so Great lol most of not all of my symptoms of firbo is either gone or way much better…time will tell.
I was on Flexeril for Fibromyalgia for more than 15 years and it worked well for me up until last September. I was diagnosed with Sleep Apnea at that time and it created a pain cycle I haven’t been able to get out of. Also the Flexeril was damaging my liver. I’ve been off Flexeril since June 11th and yesterday was the first day where I didn’t experience any withdrawal symptoms from it even though I gradually decreased the dosage over a four month period. Flexeril is chemically related to tricyclic antidepressants so works on the brain in similar ways as Cymbalta and Savella.
Since September I’ve tried a variety of medications including Lyric, Gabapentin, Tramadol and even Viagra (which stopped the pain and fatigue immediately but after a few months the side-effects – flushed face and blurry vision – became too dangerous for me to continue on it). I was on Savella for under a week and experienced the nausea, sweating, and extreme tiredness others mentioned. I stopped taking it because it also caused a rash and my skin felt like it was burning. My doctor is going to put me on Effexor next and we’ll see how that helps. Currently also taking Klonopin for sleep and anxiety. Heard from another doctor who has FM herself that Low Dose Naltrexone (1-10mg) has really helped her so I’ll discuss that with my doctor this week as well.
I also see an acupuncturist who is a Chinese herbalist and he’s put me on a couple of supplements that have helped. I’m taking Cordyceps (a mushroom capsule) twice a day to help with fatigue and a natural relaxant with Valerian Root and Passionflower called Formula 303 to help me sleep. Found it’s also important to take Magnesium supplements because the pain is worse if I forget to take at least 500mg a day. Through the help of my acupuncturist and Chinese herbs the damage to my liver has been reversed and I’m even experiencing less IBS symptoms.
I’m currently on a leave of absence from my job because the pain was so intense and the side-effects from the meds were making it impossible for me to work. This is the worst flare-up I’ve had since I was diagnosed 16 years ago. I know there’s hope out there, though, it’s just finding the right combination of medications that works for me. Good luck and blessings to everyone else who is suffering!
John M…you stated, “I would also be interested to know if anyone on here experiences the veins and arteries dilating or popping up under their skin with fibromyalgia. I seem to experience this whenever I get hot or really stressed. It feels like they are going to pop out of my skin. It is very painful.” I too have the same symptom and pain, specially on the top of my hands. You are not alone. My doc who specializes said it is a symptom of FM. Best in health to you.
I was on Savella for 5 days. Very scary stuff! Heart palpitations, blurred vision, sweating, mania, out-of-body experience. And, that was on the starting dose of 12.5 twice a day. I have high blood pressure (being treated), and I am bipolar (being treated). But this stuff was the worst of all meds for me. I have tried Lyrica, and it didn’t do much. I will stick with Tramadol. I take lowest dose possible and
it seems to help some, without all those side effects.
it made my hear beat so hard and terrible sweats. was on it as long as i could stand- 2 weeks. took myself off before i had heart attack.
I was in a clinical study for Xyrem and it felt like it completely cured my Fibromyalgia. I have tried quite a few other things since that time but nothing is working. I had the WORST time on Lyrica. The side effects were so bad it actually made having FMS not seem so bad. Needless to say, I am trying Savella now and hoping that it works for me because I have no idea how long it will take the FDA to approve Xyrem for the treatment of FMS. I hope that day comes soon though because at least I know that Xyrem DOES work for me.
I have the feeling that we all have different disorders but have been given this crap diagnosis, we all have these weird symptoms and some people have really specific and distinct ones that others don’t, we all have different levels of pain and different types of pain, just different everything. This diagnosis is crap, I hate my life
I was on Cymbalta, and truly hit rock bottom. I was on Effexor for a while, Lyrica, and some other meds. I have been on Savella for a month, and so far, it has been better than everything else. I have some bad headaches from time to time, but that can be due to anything.
I am honestly sick of all meds, but I am thankful that they are out there. One day, none of this will be necessary. Until then, let’s hang on!
Neil, it will be alright! I know it seems hopeless, I look at this list and I am grateful that I don’t have some of the same symptoms others are having. I have been on Lyrica for three months now and I didn’t know how bad I was until I found some relief. I wish I could be a lot better but truth be told I can still count blessings. Look for a support group I hope you find some help.
I was diagnosed with fibromyalgia over 10 years ago. I had gotten to the point of having to take a narcotic (darvocet, at least twice a day), muscle relaxant (also at least twice a day), cymbalta, lyrica, and advil as an extra on those especially bad days. I also have had to walk with a cane for the past eight years. I began Savella about five weeks ago because the medicine regime was beginning to stop working – it was either up dosages or try something new. With Savella I have been able to eliminate ALL other meds – I don’t need to use my cane all the time!
Hope others have better luck. I had severe nausea, headaches, dizziness, and vomited until I discontinued only after a couple of days. Severe abdominal cramping and diarrhea as well.
I was diagnosed with Fibro 7 yrs ago – have tried it all – flexeril, ibuprofen, robaxin, baclofen, valium, cymbalta, lyrica, nuerontin, vicodin, chiropractic, herbs and more.
But several months ago after a dislocated hip and rolled ankle (seperate incidents and only in my 30’s) the Dr tested my Vitamin D level and was shocked!!! It was only 4 and the lowest acceptable level should be 50-100. So started prescription strength Vitamin D2 and I feel 80% better…. guess what the symptoms of Vitamin D deficiency are??? Muscle pain, tender spots, fatique..etc… does this sound familiar! So I suggest anyone with Fibro get tested.
I take 50,000 IU twice a week (Dr says some Docs say once a week but twice seems to work better) It is a fat soluable vitamin so you can overdose – so they check my levels every three months. My current level is only up to 20 and I feel much better – hope when I get to 80 (Docs goal) I will feel like a normal person.
My dr.ask me to research Savella so we can talk about this next visit. I have been taking
lyrica since they approved for fms. But I think it has affected my vision alot. The only thing I have seen that lyrica works for is the burnning stabbing pain in my shoulders.
Was wondering if the savella helps with this type of pain. I think I might stop the lyrica or have dr cut the dose from 200mg down to 100mg a day. If anyone has this burning stabbing pain let me know what you do
thanks
This is my second round with Savella, first, I started with the 2 week trial, on the 6th day, I woke up and did not feel like I needed the norco or Soma. But a few days later, I thought I was coming down with a stomach virus or that that Savella was making me extremely nauseated. So I stopped it. 2 weeks later after I was over the virus, I guess, it all passed, I got another prescription for the savella to try again, for a few days it did help tremendously. I am now about 4 days into it again, i take 50mg @ night and 25 in day. I really think there is a difference. I seem to have more energy and I can manage to get out of bed without taking norco and soma first, but I have notices awful night sweats. but you know what, i will take that any day if it means I can function without wanting to cry. My big concern is, how long will it work? Neurotin and Lyrica only worked for a few weeks and a few months, but I will take what I can get. 1 thing I have learned about Fibro is that each med reacts differently on each person and I have not found 2 people who benefit from the same regimen. good luck to you all.
Just started Savella yesterday. Very glad to see that it seems to help many with minor side effects. FMS 10 yrs – tried it all, now taking Ultram and Xanax daily along with OTC Aleve and Tylenol.
Blessings to all here.
Well Ross it sounds like we are in a similar place. I started Savella titration pack on 8-6-09 also. I stopped cymbalta 60mg cold turkey the day I started Savella. Feeling very weird and blurry, after checking out side effects of cymbalta withdrawal I think it may be one of the big problems. My head hurts and shoulder neck triggers are going wild. I have trauma related Chronic Myofascial pain. Darvocet and xanax are 2 drugs that I use very cautiously. Darvocet no more than 3xs a day xanax even less. Although I am in more pain I am afraid to mess with my brain any more by adding a dose of darvocet. I am going to try to keep moving with gentle activity and drink lots of water. Many sites recommended the water. I will take into consideration the supplements mentioned, but I am going to add omega 3 tabs today and try to limit refined sugar. The bad thing with lyrica was an appetite change and added 20lbs over a year, then cymbalta for over a year and no weight loss after discontinuing lyrica. Now I see that weight gain is a side effect for cymbalta.
All I can offer is encouragement to hang in there. All of these real medical issues mentioned are just now being recognized as legit, new treatments are increasingly being found and approved.
Life is good and we can participate.
I have been on Cymbalta as an anti-depressant for a couple of years now and it works well for that. Didn’t do anything for the Fibro pain and chronic fatigue. Narcotics barely take the edge off and I hate the way they make me feel. Doc and I tried Lyrica but the side effects, swelling in my legs and hands, were too severe. Have been on Savella for just about 2 weeks. Don’t see the improvement I did right away with Lyrica but the side effects are barely noticeable. I get flushed and sweaty not long after I take it but it doesn’t last long and goes away completely! So far so good!
Vicki, I was glad to hear that the Savella sweating only lasts a while. I have been off Cymbalta and on Savella almost 2 weeks. Withdrawal from Cymblata was the worst and those side effects are almost gone. I am feeling more like myself, have started to return to normal weight. I was wondering if it is ok to take cymblata and savella at the same time? My Dr. said no and that was what the literature seemed to say.
Marci in OK
My neurologist prescribed Savella for pain and migraines.
I’d be interested to hear from others and if it helped to eliminate/reduce their migraines.
I have been on Savalla for 2 weeks now and tapered off Cymbalta 1 week and don’t notice the absence. I do have lightheadedness, heart palpitations and blurry vision. I have a real sensitivity to drugs so the first week I took the little tiny blue pill once a day. I am up to the white pill once a day but donn’t think I can go any higher because it relly is making me hyper. Which actually is good because my fatigue is much better. So is my pain. Not gone but better. I’ve had some kind of immune disorder (RA or fibro or both – my doctors can’t agree) for 7 years now and I know what some of you are going through. The “I can’t stand this another minute” feeling is something I’ve experienced.
I will continue on the Savalla for now but I still think there is a lot of unpleasant side effects. I’m still on Lyrica so maybe that is causing them too.
I have had CFIDS/Fibro since 1994, came off Cymbalta slowly, but it was rough. I have been on Savella 50mg twice a day for a month now and it has really helped the pain. No help with the depression, I feel very emotional, crabby and on the verge of tears all the time. Side effects are sweating day and night, stomach cramps, constipations, bloating and a 6lb weight gain in the first two weeks. I was hoping that gaining weight was not a side effect of this RX as I am already 30lbs overweight. I have not had more energy, still sleeping poorly and tired all the time. It’s nice to be without pain, but if the side effects don’t go away, I’m not sure I will continue. Medicare/Humana will not cover this drug at all. I buy 100mg tablets from Costco and break them in half. The 50mg tablets are twice the cost.
Anyone else experience weight gain and did it go away?? I wish I had the $$ and energy to take water aerobics to help take the weight off.
Hello,
I have been on Savella for 2 weeks and was advised by my Dr. to take 2 starter packs and take twice as long to introduce my body to higher levels of the med. Side effects are sweating, heart racing, and constipation. So far, the only improvement has been a slight reduction of pain. I will continue and hope for the best.
Cymbalta was a living hell to get off of and I recommend a very slow weaning to anyone considering it. Lyrica was terrible because of a rapid weight gain, and I think anyone with Fibromyalgia will increase their pain with extra weight. That stinks because so many of the meds add some pounds.
Fibromyalgia ruins the quality of life, I keep praying for that miracle because I feel more sorry for my loved ones living with me than for myself:(
Good luck to everyone, hope we can all keep posting updates on this new drug!
Folks, you CANNOT take Ultram with Savella! Very, very bad. (Dr should have said this out loud before starting!)
I’ve been on it 4 days and feel nauseas and fidgity and still have all my aches and pains. Also had serious migraine most of last week, woke up three days with dreams about having headache and actually had headache! I assume it is from the Savella, as nothing else has changed.
Daily I take: Flax Seed 2000mg, Magnesium Citrate, Antioxidant Cocktail, Vitamin C, Vitamin D-3 1000 I.U., Acidophilus w/psyllium, and L-Lysine 100mg.
I’ve been taking Flexeril & Ultram as needed. They work for the immediate time. I’ve been on Dapsone for six months and do not feel it’s doing anything. Prednisone for flare-ups (I get wicked mouth ulcers since my tonsils were taken out 17 years ago.)
Been reading about hGH and I think I am too young for it, but my mother isn’t. I feel this could be as close to a cure as possible, yet most doctors don’t bring it up as a treatment.
I believe Savella is giving me migraines. I want to give it a chance. But I also feel odd. My doctor said, “If you don’t feel any better after 2 weeks, stop it.” I would stop it now, but feel I should give it a chance.
Gina,
I hope you’ve talked to your doctor about these side effects. Your migraines sound like the ones I had with Lyrica, which were the worst pain I’ve ever felt (quite a statement from someone with fibromyalgia!) If you do decide to go off of Savella, be sure you get proper weaning instructions — it’s dangerous to quit suddenly.
AFTER BEING IN A REAR END COLLISION FOR THE THIRD TIME, WITHOUT SURGERY AS AN OPTION, I HAVE USED FENTENYL LOLLIPOPS, WHICH JOHNS HOPKINS RAISED HELL ABOUT, THEN ON TO OPANA, ALONG WITH MAX DOSE OF LYRICA, WITH SKELAXIN, AND OXAPROZEN, NOW ABOUT TO ADD SAVELLA, FM WAS JUST DIAGNOSED AFTER AN EPISODE OF MY MUSCLES DRAWING TO THE POINT OF NEARLY BUSTING OUT OF MY SKIN, PRIMAL SCREAMS, AND UNCONTROLLABLE AGONY. I CAN SLEEP ONLY A FEW HOURS AT A TIME, THE SMALLEST TASK LEAVES ME EXHAUSTED. THE BEST I FELT SINCE THE ACCIDENT WAS ON AN ANTI-INFLAMMATORY DIET. GLUTEN AND NIGHTSHADE FREE WITH ONLY COLD PRESSED CANOLA OIL USED. AFTER THE EXORCIST PAIN EXPERIENCE IT WILL BE A LONG TIME BEFORE A PIECE OF WHEAT OR NIGHT SHADE TOUCHES MY LIPS. I DO CHIROPRACTOR, ACCUPUNCTURE, REFUSE TO GO TO ANOTHER PAIN MANAGEMENT DR EVER AGAIN, HAVE BEEN TO 5 OF THEM, THAT WAS ABSOLUTE TORTURE, ONLY MADE ME WORSE. HOPE THE SAVELLA, AND MAGNESIUM OXIDE DO THE TRICK WITHOUT MANY SIDE EFFECTS. CHEERS!
I was interested in the comment by Susiedal about Effexor causing sweating. I’ve never thought that may be the cause. I’ve been taking Effexor for a long time and I didn’t always have the unbearable heat and/or dripping sweat. Do you have any more info? Thanks.
Thanks so much for this site!!!!!It is such a comfort to be able to read similar & informative stories.I was on low doses of Prozac & Amytriptiline and was so fortunate to go into a “remission” for yrs.(I was diagnosed with Fibro. over 10yrs.ago)Came back fierce 2mos ago(who the hell knows why)nowweaning off Lyrica(didn’t seem to relieve pain & added bonus of 10 lbs)5th day of Savella trial pack(super sweats but much less tired)Pain still there so far, but-so is the hope(that this new Savella drug will work.)THANKS AGAIN for all the comments & stories you’ve all shared.They are a great source of information & also comforting to someone who has similar “pain & depression caused by it”.I will continue the Savella & I’ll continue looking forward to everyone’s personal stories.Keep the faith & keep trying all the new offerings for this “odd situation”we’re all in.If it’s any comfort-at least you, know you’re not alone.THANKS AGAIN!
Nurses sometimes are the worst patients. I am an OR nurse. I went through years of pain,(constant dull burning with ocasional sharp shooting pains down my right arm, some numbness and tingling, but rarely. the worse of the problems was the lower back where i also had a constant burning in my lower back with sharp shoothing pains into both buttoks and down the right leg,lots of intermittent numbness, tingling, stabbing in my foot) from a car accident in 1/2006 that i “dealt with” until the symtoms worsened i couldnt take it anymore in 1/2008. Went to a pain management dr and started with an MRI of my neck, showing 2 bulging discs and severe muscle spasm, I had no curvature of the spine that should be there.The dr wanted to do epidurals and trigger point injections, I wanted a second opinion. Next, to to Spine Specialist. Prescribed physical therapy, and some flexiril and said thats all he could do for my neck. Next concerned with my lower back he ordered an MRI of my lower spine, that was never ordered by the doctor that treated me following my car accident. Surprise! 2 herniated discs, L-4 L-5 and L-5 S-1 both comproising the left exiting nerveroot. Again, PT this time some Skelaxin since the flexiril did nothing but make me sleep, and a referrel to a neurologist. Inconsistent neuro but basically “within normal limits”. This doc decided I needed an MRI of my hip since I had almost abnormal results and my complaints of groin, joint, buttock and leg pain. Labral hip tear. Constant refferal from doctor to doctor every test showing something but nothing “major”. Until I injured myself at work this year moving a 450lb patient, landed a trip to the ER. Finally now the pain is being taken seriously. After months of solumedrol, percocet, valium, prednisone, oxycontin increasing the doses…continuing PT for the 8 millionth time.I got a little better as I always do with PT, but then i regress after a few months. Went back to work after 2 1/2 months, apparently too soon, since I was only back at work for 3 weeks 12 1/2 hour days. I couldnt make it through a single week without leaving early because of the pain. Back out and still currently out of work. My physchiatrist, the only doctor that REALLY listens to me, I guess its his job, decided to put me on Savella. I have been taking Wellbutrin for years and had just recently lowered the dose before the work accident because things were so good in my life and I wanted to try life without drugs. Apperently not in the cards for me, but the Savella has shown some promising results. Decreases the need to take anything stronger than motrin or aleve for the pain. I just hate the dry mouth! I’ve also noticed an increase in my BP and get hot easily, I used to always be cold. Other than that I am pleased thus far.
Thanks for all your comments. just diagnosed this year am allergic to lyric trying savella today I’ll admit I’m scared the lortab and ativan helps when pain is worse. I try not to take anything. The fibro-fog gets me the worst.
I’m on 50 mg a day for fybro and/or lupus. My fatigue was so bad I could bearly hold my head up, but within two days of taking Savella I was wide awake. It’s great for energy level and brain fog. It does make me sweat more and does nothing for pain. I love the stuff, but may have to discontinue it due to the exorbitant price.
I’m on 50 mg daily, supposed to take another 50 mg at night but it causes me severe insomnia, may try 100 mg in the morning only. I take it with food. It does help with my daily pain but its effects wear off by mid-afternoon. I still must take flexeril, fioricet (headache), and darvocet for the muscle spasms & pain management.
I’ve been on Savella for 6 days now. It has honestly been horrible for me. My blood pressure has gone from normally 110/70 to 150/95 (around there). My resting pulse is way up anywhere from 90 to 130 bpm. I feel nauseated, lightheaded, shaky, like I can’t stay awake (almost like I’m going under general anesthesia). I feel extremely depressed, scared and hopeless since starting the Savella. Should I stop now or wait until I see my Doctor and give it a longer try? I really had high hopes for it. I have had Fibro for 5 yrs. and the most relief I get is from Vicodin (Norco). I need 3, 10/325 at a time to get some relief and it is short lived. I take Lyrica which seemed to help at first with arm pain, but after a few months the pain started to break through. I use moist heat, ativan, and get massages from my supportive husband, but I feel completely desperate at this time. Any suggestions or advice will be taken with much appreciation. Thanks. Francine
Francine,
Check with your doctor about the side effects you’re having. Some side effects tend to go away with time, while others require that you wean off of the medication. Whatever you do, don’t go off the drug too quickly, as it can be dangerous.
Best of luck to you!
I have been on Savella for several weeks now…it is the first thing that has helped my pain in 15 years!!! My Doctor had said it would take 5 to 6 weeks to build up in my body and start helping. No major side effects (very mild nausea on occasion…be sure to take after eating) and it seems to help with weight loss (a very nice thing). I am currently on 50mg twice daily. I still have to be careful not to “over do”…and I am still tired at times, but it is GREAT not to have that terrible pain. Hope this lasts.
My 17 year old daughter has been on Savella for a week. She has noticed a difference already but I cannot accept that she will need to take this medication (50mg) twice daily to maintain a quality of life. This condition is so frustrating. Sleep disorders, GI problems, fatigue, brain fog, mood swings, joint pain/TMJ. So many specialists, all want to prescribe a med related to their specialty. Our PCP prescribed Cymbalta last year and my daughter had severe nausea/vomiting and had to stop the med. We have found Savella to be most effective so far but its not a cure-all. And the doctor stressed NO alcohol use with savella(will cause liver damage!) While I know my daughter does not drink alcohol currently, she admitted to using marijuana on occasion and gets some relief from this as well. This is sad but true. She is not a bad kid. She struggles to maintain high honors but misses school alot. She is preparing for college next year and I dont know how she will manage a schedule with this condition. We are going to a Fibromyalgia and Fatigue Center that opened in our area. I have read good things about them. I need to explore the REAL cause of this condition and find CURATIVE methods if they exist, which doesnt seem realistic I know. Its just that these doctors want to tx the symptoms and not fully explore the causes (ie: viruses, metal, yeast overgrowth, lymes, adrenal and/or thyroid disorders). Supposedly this center has many positive results. ANyone here tried them? As for Savella, will keep up the med for now and keep our fingers crossed.
I began a trial pack of Savella a little over three weeks ago, I have FMS and numerous failed knee surgeries to provide enough pain to also require a narcotic pain reliever, as well as paxil and gapapentin. Please!!!!!! Be careful when beginning Savella. It lists nausea as a possible side effect so i continued taking it. That is until the pain in my stomach was the worst I’ve ever felt and even after not eating for an entire day I experienced dry heaving to the point of passing out. I ask you all to be very careful with this medication. I stopped taking it day 11.5 and will never again take it. My Dr. said that I should probably have been admitted to the hospital due the the severity of my allergic reaction.
Is anyone on Cymbalta and Savella? My doctor advised me it was okay to take both. I read a post that says it’s not..? Really need releif from the fatigue and pain, and not looking forward to weaning off the Cymbalta…
Some of my friends have tried Savella. Some of them have had good results with it but one of them did not have a good result. She had to get off of it because it bothered her stomach so much.
Having been on ssri’s for 12 years, I will never get into that again. I am trying to ditch the habit right now and it is difficult; I have read nothing positive about savella; I have seen a few articles. (Red code) and Best pills, worst, pills and they are very negative….I have traded my ssri’s in for acpuncture and behold a miracle. Just be aware that it is not a quick fix like a pill but it does happen with committment and an open mind and no side-effects which always seem to indicate taking another pill to help with the side-effect of the first pill…..try the needle…
I have both CFS and fibro, but the thing I most want help with is the foggy thinking. I have been on Cymbalta but my doctor started me on Savella last week after hearing from a GP that Savella helps with foggy thinking. I am going on Savella and he’s slowly weaning me off Cymbalta. Hope it works. Good luck all and God bless.
I’ve had CFS for 25 yrs. & Fibro. for 8, & am completely disabled. I have asked my PCP, 2 Neurologists, & a Rheumatologist to let me try Savella, but none of them had even heard of it. I printed out info. on how to prescribe it. My PCP said he’d research it, but later said he won’t prescribe it because he isn’t familiar with it. I just don’t have the strength to keep trying to find a Dr. who can help me.
I tried Savella, and about a week into the trial, I started experiencing very disturbing side effects. I was sleep walking, hallucinating, talking to people (that I could see) who weren’t real and doing things when I was sleep walking that I didn’t remember at all. I would open the refrigerator door and stand in front of the open refrigerator for 30 minutes at a time; I woke up my husband several times to deal with people in our kitchen that had things that belonged to me – I even got rid of appliances and cut cords on others. I ended up going to the hospital about a week and a half after I started taking Savella as a result of an infection and electrolytes that were very out-of-whack; it took about three days of discontinuation for all of these symptoms to finally go away. I have talked to others who have experienced these same symptoms with Lyrica and Cymbalta as well. I just know that Savella is not for me.
Using a combination of Lyrica 150mg and the last five days on a trial of Savella working my way to 100 mg a day on that, so far, i have had more energy, less pain, and am taking less of my Tramadol and muscle relaxers. the whole point to taking both meds was to cut back on the other pain meds, i hope it continues with the same results.
I was diagnosed w/FM about 2 yrs. ago and have been on Cymbalta, Neurontin w/o good results for pain. I have been on Savella for about 2-1/2 mos. and am pleased with the results. In the beginning I experienced severe sweating (profuse) but has decreased sig. now. For me it took about 1-1/2mos. for Savella to start working to it’s potential so my advice is to try to stick it out for a while, because it may just be your answer.
I have also had the vein popping feeling with fibromyalgia. I told my dr. my veins hurt and it feels better when i rubbed them and he said it wasn’t a fibro symptom but then the next time I went in he said it was a normal fibro symptom. I have had a vein burst in my finger without even any trauma and it turned all black and fat. Savella has helped me alot I take 50 mg. in the morning. I have alot more energy, less appetite, and I can deal with the pain better. It is not all the way gone and I still have bad days, just not as many. My vein and arthritic type problems are still the same. It is a godsend to me and I have tried most of the med’s out there. Lyric made all my nerve pain worse and it is scary trying a new medication but am willing to keep trying since my children are all small and I need to function.
I have been on Savella for 4 weeks and not having fun, I have nausea, migraines (the worst symptom), dizziness and diarrhea. I was on Cymbalta for years and it worked great, but seem to have developed an immunity to it this year and have had 3 bad flare ups where I had to take Oxycodone for pain. Trying to back off of the 50mg Savella dose and do every other day, then try 1/2 in the am and 1/2 in the eve….I would rather have fibro pain than these migraines.
Carol,
I’m with you on the acupuncture! It’s done far more for me than any medications. I’m to the point where I only need a maintenance treatment every few months, and in between my symptoms generally stay at a manageable level.
I am having trouble finding a Dr. who is familiar w/Savella. If you know of someone in MA, please let me know!
I have read everybody’s comments & thank you for you posts But, I have not come across Anyone who has taken Methodone pills. I have FMS/CFS & more back-disk-spams – TMJ-sciatica The list goes on – Anyway my Pain management Dr. wanted to suggest Savella however I have a very severe case as U can tell by the med’s they have me on- I dont take anything else I dont do drugs or drink- I have a very high tolorance for pain -(I danced with a broken collar bone & was boxing with torn tendones on my wrist) I didnt know it at the time – So what I am trying to find out is- If Savella IS helping some people – who were getting by on OTC medication – what can it do for me? i have read where some of you were on some heavy med’s but got no relief from Savella – I doubt it will help me-
I did get so great tips from this site & ur posts so thanks for that. WHATEVER U DO – DO NOT let them put U on A Duragesic/Fentanyl patch – People Died & I lost all of my teeth & it messed up my kidneys/Liver – DONT TAKE IT!!!!! I am about to try this proceedure to help with ALL of the muscle knots my body is infested with them wherever there is a mucle I have them Even in my Jaw! I heard MicroVas – can help – I have an appt in 2 weeks -Ill let everyone know how is works out. Good Luck to ALL
It took about a month and a half but there has been been a marked improvement. For the 1st time in many years, I CAN WALK UP STAIRS! Not pull or push myself up them, but actually walk up. I still need to be mindful not to over extend myself, but generally I feel much better. Had some minor problems initially with irritability and occasional wave of nausea but those symptoms are gone now. I couldn’t take Cymbalta or Lyrica sufficient to be effective because of the fluid retention which made my Asthma worse. Finally, something that works without the weight gain and breathing problems. I haven’t felt this good in at least a decade.
My RH has been treating me for 10 years. He told me to stay away from any drug marketed for FM. Drug companies are just trying to make money off of us.
Pain meds, supplements,exercise and common sense works for everyone.