Anyone Else Trying Savella For Fibromyalgia? (Page 15) (Top voted first)

This is a new medication that just came out for fibromyalgia. I have several other conditions involving spinal degeneration , herniated discs, arthritus, etc.
I've been taking this medication for a little over 2 weeks now and have worked up to the full dose. My biggest symptom seems to be upset stomach but I don't know if it's from the Savella or from de-toxing from 7 other medications that I've been on for over 10+ yrs.
Is there anyone else out there that has started this medication that can give me any information that they may have on it?

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Hi all, and it is great to read so many things, not that its great everyone feels crapy but its nice to know that we aren't crazy and that others out there are feeling the same way, I find myself thinking if Teresa can do it I can, poor Lori, I wonder how she is today. Dominique (sp?) thats FIBRO for you, all I can tell you is even on the Savella enjoy the good days to the max, try to enjoy / do what you can on the bad days, even when laying around on my really bad days I still have to deal with my 13 and 14 year old girls (drama) problems and help them with school, etc, sometimes we read and do homework right from moms bed or on couch, I catch up with them about their fears and dreams which takes my mind of my problems and really if I look at it with a different perspective the fibro has been a blessing in some ways as some of my girls friends moms don't have time they feel good, they're always on the go, I always wanted to be that kind of mother, was angry and chastised myself constantly because I wasn't and now after 20 years of fibro have come to the conclusion if you have to live with it you have to find different coping mechanisms, AND ask me tomorrow I could tell you to heck with all this I'm sick of the fatigue and pain, BUT in the BIG picture I have to stand back, look and my four children, husband, and my life and be thankful for what I do have and have been able to do...other days and even weeks at a time I struggle extremely hard with this but try to keep in the back of my mind the perspective because at this point it sounds like the Savella is more helpful than anything so far....and I'm like someone else on here who has tried EVERYTHING and ANYTHING docs have prescribed and right now theres no cure, just symptom relief, holistic approaches and attitude, i know, i know easy to say, HARD to live. HANG IN THERE ALL!! HUGS!!

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Hi all...I have not been on in a while due to a very badly bruised forearm and hand. It is still ugly looking, but feels better than it looks :) Has anybody else ever had a problem w/ weakness in the legs? I have had this issue for the last 3 years (fibro for 12 years) and my wonderful MD has ruled out anything being wrong other than fibro. That is how I beat myself up :) I stood up from the couch and went to take a step and fell. The legs just give out. Unfortunately, my forearm mad a solid contact w/ the tile and wood coffee table we have :) No breaks (my doc was amazed it was not broke) but the bruise runs from elbow to wrist and continues around to encompass the entire top of the hand. Anyway, if anybody has any ideas, I am open to them all :) I have not had any of the mood problems w/ savella that others of you have experienced. I am monitoring my blood pressure closely as it took me 16 months to find a medication that would keep it down low enough to not harm my body over time. I am praying it levels out and comes back down to where it was before savella. Someone had asked why savella seems to work better than the other drugs we have been given that are an anti-depressant like savella. As a registerd nurse, i did some research and here is the difference. All the other anti-depressants used for fibro are what is called a SSRI. A Selective Serotonin Reuptake Inhibitor. Savella is a SNRI. A Serotonin Norepinephrine Reuptake Inhibitor. That is why we are getting better results :) ok...sorry for the wordiness of this post...Tessie...luv your great, positive attitude! It pretty much mirrors mine...we have it, its not going away, so make the best of life anyway :) Fibrogirl..glad u are able to keep getting relief. Having no insurance is hard. Lomai...hope the trigger point injections coupled w/ savella has worked for u. All the new people...Welcome :). And just a nod to all on this site. We are strong people who keep fighting the good fight :p Remember to find the funnies in life and laugh as much as possible, cuz we all know that at times it is either laugh or cry. Everybody stay as happy as possible, as strong as possible, and as well as possible :p

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Well...my Savella experiment has ended up much as other meds have and I will be crossing it off my list. As I reached the prescribed dosage I began to notice that my mood was changing dramatically. I went from loopy to alternating between crying and intense anger. Being someone who is pretty laid back, this was a little hard to take. I spent time trying to find out why this might be happening but it seems that there is just enough info out there to understand how SSRI's and SNRI's work (in theory) but as for more detailed info I did not have much luck. I did read that people with bi-polar disorder are prohibited from taking it as it can make it worse and although I am not bi-polar I wondered if other conditions may be aggravated by this drug. For me, I think it was the nor-epinephrine re-uptake part that I can not handle. I did have some shortness of breathe and increased anxiety that came in waves and I do have an existing anxiety disorder. An other thing that happened along with the anger/sadness was a marked worsening of exhaustion and heaviness in my limbs. So, now I am frustrated AND wiped out! I imagine there are some good chat areas for woman discussing how they are managing work. If anyone has suggestions, I would like to check them out. Work is a struggle but I am a single parent / sole provider of my household so not working is not an option. Thanks everyone. I hope others have better results with Savella than I.

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Faith, if you read post of Loami? just above yours, can the difference in SSRI vs SNRI cause such aggitation in some people, I''m not bipolar either but I haven't been able to maintain full dose of Savella, had to cut back some cuz I was yelling and screaming at the kids and random cars, cats, dogs, etc., lol... seriously I didn't feel the heaviness in limbs, etc in fact mine fatigue and heaviness is better its just the anger, agitation vs crying spells thats worse for me at this point. ALSO, I have one leg that does this, sounds stupid I know, both do feel weak / wobbly depending on what I've done day before but my right one just randomly decides to LET LOOSE if you will and I have lost balance, tripped, etc, but not fallen to extent you did...weird...hope your doing better. Thanks for support. Love to all, hang in there everyone!!

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Hi all...I am not sure whats causing the exaggerated mood swings w/ the savella. I will get my nursing books from the ex's house next time I am there (just not sure when I will be over there) and see if I can get some info from them since Lomai was not able to find any real info on the internet. I am so disappointed that savella is having this affect on so many people because the med works for the pain and fatigue. I am one of the fortunate ones who does not have the mood swingsbad enough to warrant stopping the med. I had angry mood swings when first diagnosed w/ fibro, and learned how to read my body signals in order to talk myself back down. I did do alot the week my legs went out. I felt better than I had in a long time (til I met the floor) and I told my dr I know I over did it. Lesson Very Well Learned...lol. Also, I asked him about the link between fibro and viruses. He has not heard of it, but I am taking him a list of viruses that fibro patients are being tested for. There are like 22 or 23 of them, and according to the Fl dr, people w/ fibro generally have at least 3, if not more of them. I will continue to post my progress as I travel down this road. The nest step will be saving the money to test for the viruses, as I am currently w/out health insurance. Thanks for the well wishes Tessie. The arm is getting better slowy, but it still hurts like H*ll. Take care all and hang tough :)

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I have been on Savella for 3 months and have not experienced major mood swings although I have had a few fits that a 2 year old would be proud of. :) However I am still experiencing pain and body aches which makes me think that the Savella is not working. Could this be something else besides Fibro? I have had a blood test for RA and the doc said it was negative. Ready for some relief.

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ok as far a as the mood swings. you have the figure the epinephrine boosts your metabolism a bit thus the increased BP and the sweating. So it is expected that we might be a bit high strung. I don't know about you but I was semi comatose before and it took great strides to get a reaction. I am keeping an open mind and considering that outside influences could be responsible for the mood swings not the Savella Like bills, kids, life!

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Hi all..the norepiniphrine will trigger the flight or fight reaction, so it will up the blood pressure and can cause fast heart rates, so the mood swings fit right in there, like fibrogirl said. I wonder if the people that are having mood swings that are disruptive to daily life, can decrease their dose to a point that they still get some relief from fibro but avoid some of the mood swings(we will all have mood swings forever as we are human ;p). Onlt Your Doctor Can Make The Decision To Decrease Your Meds! as we all know, savella is not a drug you want to stop abruptly. It has to be decreased over time. Gibsosh....I still have aches and pains as well, The savella helps alot, but it has not completely gotten rid of mine. I am on 50 mg 2 times a day and have been at that dosage for about 3 weeks now. Another interesting thing savella does is it acts as an antiinflammatory in the brain...viruses cause inflammation. Wonder if there is something to the virus theory. Can't wait (but I will have to)to get my blood tested :) Take care all

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THANKS Faith and Fibrogirl, and YES the decreased dosage of the 50 mg 1 qd is working good on fatigue etc, better than anything else, however I know there are days the stresses of life in general, bills, etc make mood swings worse BUT the AGITATION, like bite everyones head off in a second, no thought, no anything and then I was so witchy my family could't stand me and I couldn't really stand myself...it was seriously that bad at the 50 mg bid.
As to the INFLAMMATION thing, I've been told by my rheumatologist, like 10 years ago (I have been diagnosed with lupus and rheumatoid arthritis) that fibro goes hand in hand with these diseases...for what thats worth. This was a doc who believed in the fibro before it was believed in so to speak. Faith, I'd donate to your testing causes just for the info, seriously, please keep us posted, do you know any of the viruses off top of your head...I too worked for a doc as nurse / medical assistant for ten years, just wondering. Thanks all and hang in there ALL.

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I will be playing around with the dosage to find whats right for me. right now I am taking 50 mg once a day until I get the IXEL( france's brand name for Savella) then I will up to 50 mg twice a day. I will work it from there. It seems the only missing link here is dopamine! I am taking 5 htp and will be taking SAM-E when I can afford to buy it. I was considering L Dopa as well. Any input appreciated.

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Hi all...Fibrogirl, if you have a regular MD, please be sure they know what you are doing with your meds and any supplememts you take. Not so you can have their approval, but so they know what you are on if they decide to add something to your med regimine. If I was doing it on my own, I would stick with increase or decreases that are divisable by 12.5 since this is how the starter pack is broke down. You may find that 25mg 2 times a day works instead of 1 50 mg a day. On the Sam-e, just be aware that it affects serotonin levels (as well as dopamine), and savella already affects the serotonin receptors. Good luck and hope you find what works for you :) Tessie, you are right about the daily irritations of just life :) That is probably why I laugh at alot of them...beats being mad anyway :) As to the viruses, the most common ones the MD in FL found in fibro pts is Cytomegalovirus (CMV), Herpes:8 types are tested for, Parovirus B 19, Rotovirus, Enteric Coronavirus, Enterovirus, Varicella-Zoster virus (VZV), adenovirus, and Coxsacki A & B virus. The others that the Fl doc tests for are Astrovirus, Calcivirus, Torovirus (toro=bull....hehe), Picovirus, Pogosta Virus, and Sindbis Virus. I am taking a copy of my info on the possible virus link to my doctors office tomorrow, but i am not seeing him. He just asked me to bring it when I had time so he can research it. He is so fantastic! Wish all of you could see him :) I will see him in May or June. I know that they can test for some of them in their own lab, and he will cut me a break on price, but not sure how many they can do there. Thanks for your offer, but I will get it done. It is not something I am going to put off to long, but after 12 years, iI have the patience to wait a month or two. Actually the anti-virals will be more expensive than the testing I think, if he decides to put me on them. have a great day all of you, and hang tough :)

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WOW Faith! I'm so amazed at how great your doctor is. My GP also seems to think that in a weird way, all my DX's are somehow related virally. And it may stem back to when I was pregnant with my last child (22 years ago), if not longer. At 5 months pregnant I developed a viral infection that stayed with me the remainder of my pregnancy. They could never define the strain. A year later I became pregnant again but ended up having a miscarriage. While in the hospital they determined I had another viral infection, cause and strain UNKNOWN! Over the years I have been susceptible to alot of viruses. I developed Parvovirus (which I don't wish on anyone) that took me over 6 months to overcome. My rheum said some people - ME - have lifelong complications from it. I've also tested positive for a recent strain of Mono, EBV and a few others I don't remember. So, I think it's very possible that the link between FM and viral infections is quite possible.

I've been under a tremendous amount of stress lately so I've been flaring like crazy. But I think my CFS is fighting with the FM right now. Each one wants to be boss of my body. Grrrrr! I can't sleep, I hurt and I'm exhausted. Not a great combination.

Please keep us posted Faith on your progress with your doctor.



-Believe that life is worth living, and your belief will help create that fact.
- William James

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I have taken savella 3weeks first pill in pack is12& half mg. worked right away no more pain dr put me on 50mg but i am cutting back as i dont need a high dose only thing is i have week legs has any one had that trouble? thank you

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I saw the pain doctor yesterday. Very nice, well informed and methodical. She really addressed everything the other docs dismissed. How refreshing! Because of my heart failure she has to be very cautious of the meds she prescribes. Bad news for me since most of the Fibro drugs don't mix well. But she is optimistic we can find effective treatment even if not in the conventional way. She gave me 3 new meds to try. Voltaren Gel, Nuvigil and Skelaxin. She's not expecting much from these but she's hoping it will point her in the right direction. We shall see. She's also scheduled an MRI to see if I have a rotator cuff tear.

So, how are you gals doing? I was in alot of pain after my visit with the doc but I woke this morning feeling better. Fibro fog has been my biggest problem lately. I just can't seem to shake it. Oh Well!

Everyone have a great day! And remember If it is to be, it is up to me.

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So i'm on both Lyrica and Savella (max dosage for both) Since Savella pain is quite a bit better. What do any of you think will happen if i try to go off the Lyrica. Last time i tried to wean off the pain was terrible.

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got my IXEL ( French Savella) today. I am going to try 50 mg once a day then up it to 50 twice a day. It is in capsule form so cannot split it. I am also going to add a product called BalanceD to increase my Dopamine. It is herbal and availalbe without a prescription.

I am still tire dand take naps but am not in as much pain. Savella seems to be working!!

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Hi, long time no write. Been a busy girl. Happy to report I have decreased my savella and wellbutrin SR to 1/2 the amount. Tomorrow I go back to the pain specialist (I cancelled the last appointment because I have no need) to get off the stuff. I have better luck with accupuncture and chinese herbals. Sure, my insurance doesn't pay for it, but my health is worth it. Went riding horse (in the rain - I got great raingear) and I have been sleeping incredibly well! I've been excercising - not for a LONG time period, but I am doing close to ten minutes of cardio work out. I'm happy right there. I do use the lydoderm patches for the achey spots. My flare ups are very minimal, and instead of lasting days, it is more like hours. I'm continually amazed. So are all the people I am around as they can hardly believe that I am the same person. Good luck to you all, I hope you can find the desire to give something else a try. Of course, you have to want it.

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lori , pharmaceuticals were a last resort for me. it is had to find good practioners of alternative medicine who know what they are doing. you are lucky to find one. I am in FL in Brevard County and do not know where to ifnd one. Referral appreciated if you have on

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Hi all. I am very curious about the Chinese herbals. I have often thought of looking into it but Wyoming is not the place for that. But I have long theorized that the Chinese system of herbs and healing would work well with the peculiarities of fibro. Could you give a little more detail on how this condition is treated within that system (i.e. - special herbal blends, how often taken, what form, other companion treatments, etc.) I have done all the pharmaceuticals I care to try after nearly 20 years with little success. Although, I am taking the somewhat new Amrix, which is a time released flexeril that does not make me drowsy and works nicely for stiff muscles and migraines and I do take tramadol as needed for pain, as it has been the only drug that gives me relief, but I use it sparingly. Thanks for your time and best wishes to all in their daily battles with this condition!

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I have been on Cymbalta now for 3 years. I can only tolerate 30 mg. It is somewhat helpful, but taking Gabapentin at night along with it has helped too. I've gained 15 pounds through the past 3 years however. I'm on other meds too though for anxiety and muscle relaxant for night. I have herniated discs in my neck and lower back. I want to try Savella. I was recently rearended and I'm in terrible pain now and can't get relieve. Lyrica was horrible. Only made it a week on it. I had swelling of hands and feet and weight gain. I don't know which drug is causing it, but I crave sweets. I've always stayed away from sugar and now I seem to be addicted. Does anyone know what type of doctor is willing to give trigger point injections? I need relieve and I'm willing to try almost anything at this point. Fibromyalgia and Chronic Fatigue has taken my life away from me and I want it back. I know that all of you suffering with it feel the same. If I find anything that helps, I will be sure to let you know. I have a friend that started Savella 6 weeks ago and says she's feeling so much better and hasn't really noticed any side effects. That would be so great, but in my history I seem to have side effects of some sort or another from anything I take and I usually have to stay on lower doses than most people. I'm a light weight when it comes to meds. I've tried to withdraw from Cymbalta, but can't make it more than two days without becoming suicidal and going into a migraine. Wish I had never started it. It does help the hypersensitivity that I have though.

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