Anyone Else Trying Savella For Fibromyalgia? (Page 23) (Top voted first)
UpdatedThis 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?
I posted on 11/27/11 questioning whether or not Savella was any good. I was on it till right after Christmas, then finally got into see a rheumatologist. I guess she caught me on a bad day, so she changed me from Savella to Effexor, added Naprosyn and Baclofen. She also told me to stop taking so much Oxycontin - take 2 15mg pills a day instead of 4.Within 10 days I couldn't stay awake more than a couple of hours, and began having intense restless leg syndrome that was so bad I was pounding the bed with my fists and crying. The next day I went back to my original provider who wasn't real nice about her changing so much of my meds. He put me back on the Savella and added Ropinerol for the leg spasms and somehow this particular combination - Savella, Naprosyn, Baclofen, Ropinerole, and my 4 oxys is working.
I am now working a part-time job as an art instructor and my boss is great about giving me the opportunity to stop and take a break if I need it. The first day was tough - I came home, laid down for a nap and 7 pm and slept through the night, fully clothed. But each day gets a little easier as I learn to pace myself. Last night I sat up with my daughter and watched TV till almost midnight.
So, as far as the Savella goes, I'm sold on it. It just took a little work to get everything together.
Hi. I will share my Savella story. First, Milnacipran is not new. It has been around earlier than 2005 in studies and if you follow these threads you can tell how long it has been injected into the mass market. Side effects can be severe and it WILL be a little different for everyone. I take it, but experience: the yellowing of the eyes (you may not notice, but your family will) and the bruising below my eyes around the cheeks (I'm 47 and have good skin pigment), probably the most difficult, kidney pain (yes kidneys, because the body is naturally trying to expel the drug). The only other mentionable effects I experience are migraines at full dose (Ouch) and insomnia. Sweats, chills, flush, tingling and kidney pain (you will notice this as lower back pain) etc. will ALL subside as long as you stay on the drug. The kidney pain was the first to return upon detox (backing to 25mg in MY case). At FULL dose, I like many others experience migraines (ouch, very ouch) it is not worth turning the lights off all day and turning off all audio visuals (no quality of life). Dialing back the drug to 25mg seems to do the trick. I think a 35mg pill would be awesome (you can’t create a 35mg tab from cutting your own). As mentioned, your overall symptoms WILL vary. The balance for your system is delicate. YOU know best. IF you have high BP like me, PLEASE do not stop taking you BP meds. Two things I noticed. BP WILL go up as well as LIBIDO. High BP is also a side effect of VIAGRA (Libido). Do NOT continue the drug if YOU feel weird (your body is telling you something). I do not think it is fair for people to spook others about the drug, so I will just say the drug has had some very serious side effects in studies. If you feel weird (light headed for longer than a moment etc.), then DIAL it back. I hope my experience can be a fraction of help. Best of luck!
Interesting side effects Miguel since we have mostly heard from women and its nice to hear about it in men. I was not aware of kidney side effects, nor do i have yellowing of skin and eyes. Two of the recent side effects I get from its use are increased thirst, dry mouth, and an odd burning tingling on the tip of my tongue. Perhaps the increased thirst is related to the kidney pain?? or vice versa?? I also get a face flush at odd times which is not really bothersome at all.
I have had just the opposite side effect---diminished libido--actually, NO libido on Savella. I have not had yellow eyes, kidney problems, or tingly tongue. I do have hot flashes pretty bad, even worse than I would for just being in menopause. I don't get migraines from it, although until I entered menopause I did have migraines from my teenage years on. I have noticed that it intensifies the effects of other drugs. For example: I used to take Lortab for my IBS. Once on Savella, I tried to take Lortab and I could not function at all until the Lortab wore off--it made me SO sick to my stomach. I tried to take Zofran (for nausea) and it gave me a Migraine to end all Migraines! I basically don't take anything else while on Savella except for my Thyroid meds. Just thought you might be interested in my different experience. I am still on 50 mg, and I am thankful every day for Savella. It gave me back some functionality--and that is worth a LOT!
I have been taking my half dose nearly a month now but about two weeks into it I started to notice some pain back in my arms, nothing close to how bad it was before Savella so I decided to stick it out. Almost two weeks ago I started to drink a Glucosomine Chondroitin drink every morning called Supple. I figured what could it hurt and a good friend of mine with arthritis swears by it. I had taken pill form in the past and never noticed a difference but I swear it is working. The small twinges of pain I was starting to feel are gone. I go to my Dr. next week and I am going to let him in on what I have been doing and I hope to get his blessing to discontinue the Savella and see what effect just this drink will have on my elbow joints. It will not take me long to figure it out, my body lets me know fairly quickly when its in distress. If the juice alone does not work then I will go back on the Savella at half dose since this seems to be working with the addition of the Supple but I really hope i can get off Savella totally. I have noticed a huge difference with the flushing at the lower dosage which is a plus for me if I have to continue on it. I am a 100% advocate for Savella, it literallly was a miracle drug for me, just wish that everytime you put a chemical in your body that does so much good that it did not have so many side effects. I'll keep you posted with my progress.
I have been taking glucosomine/chondroitin for 10 years. 3 other factors you must know are your vitamin D and B12 blood levels, and if you have an H Pylori infection. Any one or more of these 3 factors and you are flirting with death long term. Sadly there are very few doctors and specialists who test for these, even though the tests are cheap. Do these tests first regardless of what your doctor or specialist wants to do. If you are not familiar with these, you need to spend some evenings Googling them and their ramifications...
WOW,sooo many horror stories about Savella!! Well,here's another one.I have been on soooo many meds since a botched ankle surgery in 1995.I was diagnosed with RSD/CRPS at the end of 1995 and STRUGGLE every single day 24/7.Have been on every pain med known to man,I think,and then last year the pain clinic I go to added Savella to my pill collection.Well,side effects?? I had every single one listed on the pill information website.Slurred speech,stuttering,no motor skill control,peepee in pants,uncontrolled bowels,drulling,fainting,sitting-just staring totally blank into space-eyes wide open,but couldn't say anything.I lost all control of my entire body.There were several other side effects,but I was so out of it,I don't really remember,I just remember being so embarassed when ANYONE saw me.I had been on the meds for about 2 weeks and then it took me about 10 days to slowing go off of it.You CANNOT JUST stop this med.You must go soooo slowly to get off of it.Now almost 9 months after I stopped taking it,I'm still having daily seizures,but it hasn't been determined if the seizures are from the savella or multiple head traumas that I had had in the year prior to the start of savella!!! This,of course,is what happened to me,after reading these different comments,wow,lots&lots of different experiences.This is just me....I wish you luck
I also have DDD, stenosis, spurs, spondilolisthesis and arthritis..which is basically DDD...and Fibro...Savella has been wonderful for me as I was allergic to Neurontin and Lyrica and unable to tolerate Cymbalta. I have no side affects whatsoever with Savella (50mg 2x daily) and lost over 20lbs since on Savella. I had gained iot while on Lyrica (when they increased the Lyrica dosage, my throat swelled up and I couldn't swallow, my tongue was huge!) I have more energy - and with the mood, I was put on Lexapro, which I take in conjunction with Savella ( 10mg. ) Again, no weight gain, I take the Lexapro at night and it helps with my sleep tremendously. The savella perks me up and I feel so much better than just lexapro alone.
Linny, I have also had really good results on Savella. However, my hair has become really thin and frizzy---how long have you been on it? I have been on for 1 year and 9 months. I can't go off because I was practically non-functional without it. Is your hair the same? I'm just sad, because I had really great hair before, for a woman in my 50s.
I am so happy for you both. My experiences were horrible but there are so many different reactions to almost every RX I am on and post about. I'm gonna continue to look for something that helps me--You go girl!! Live life, like so many of us know, there are good and bad days, really bad days. We have to cherish the good, because we know those other kinda days are coming. Take care
The nausea is a huge part of Savella---it is the worst at the beginning. It does get a little better. However, as I said before, I have been on it for over 1 1/2 years, and I have to be sure I keep a little something in my stomach or i start to get nauseated. Hang in there--if that is your only symptom, you will benefit from Savella, hopefully, a lot! It will get better.
I have been on it for two years and I didn't lose any hair, but it doesn't grow past my ears it seems. However, that occurred about the same time as the hormonal peri-menopausal stage..., but it hasn't thinned and is still shiny. The benefits far surpass my hair, I also wish I was able to grow some hair longer and I am seriously thinking I might just wear a wig for special occasions when I want to feel younger and have a little fun. All of Hollywood does it, why not us! I just am grateful to have some more energy and finally find a balance with two meds (lexapro and savella) that control the depression (the more pain the worse that is) and feel normal and energetic. Still have pain, but I have alot going on and arthritis is not fixable.
I was also on Lexapro for about 6 months while also on Savella. I only took 5 mg, but it was just what I needed! However, I really wanted to lose about 10 pounds to help out my dumb cholesterol without taking cholesterol meds, and I had to go off the Lexapro to be successful. Lexapro has never made me gain weight (I have been on and off it for years) but I can't seem to lose weight while on it. (It is because I am so happy and don't care and eat the desserts and stuff. When I am off it, I have more discipline.) Congrats on finding a great combination. My Savella does give me more energy and has taken the edge off the pain, but sometimes I still feel a ton of pain--it just is never as bad as it was before SAvella. Don't take away my Savella! I will have to hurt someone! (mostly me!)
I have been on Savella for 2 weeks,,,so I am not sure if I should say anything. I am still in some pain,,,,I do sleep better at nigh and don't hurt as bad durin g hte day. My knees are still hurting and my elbows. I feel very melancholy and very nauseated and hope this goes away soon.
I just went on it myself...I have more energy and it has gotten rid of a lot of pain for me. I was so excited about this that I could overcome the nausea but I am hoping that goes away soon. I am still on the little blue pills and I have noticed that they wear off pretty fast in the afternoon before it is time to take the next one. When they wear off, the pain and exhaustion comes roaring back with a vengeance. I feel so thrilled to have even a few days with energy, though, I think that I could put up with most anything. How are you doing on it, now?
The nausea is much better. Not seeing a differnece in the pain,,,but it can take a few weeks. Excessive flushing and sweating,,,,but I am hoping to see some improvement soon. The nausea does get better. I am takin 25mg. in the am and 25mg. in the pm now. Will move up to the next pill soon. stay in touch.
I have been on Savella for almost 2 years now, and I hate to tell ya, the sweating and flushing are no better now. Also, my pain has not totally gone away, and my fatigue is improved, but I still need a rest every afternoon, and a good 8 hours of sleep every night, sometimes more. However, that said---Savella is still a Godsend for me, and I sing its praises! I will not go off it because of the inconvenience and annoyance of the sweating--I just dress in layers and adjust accordingly during the day! (But i also have hot flashes, which I'm sure makes it worse.) Hang in there! My husband is a Dermatologist, and although he doesn't treat Fibromyalgia, he does see a lot of patients who have it. He has told them about Savella, and many of them have noticed HUGE relief from taking it, and they thank him all the time!
I have been on it for 2 years now, and my hair hasn't changed at all, as far as shiny and it hasn't thinned or become frizzy. However, I am in the menopause stage (If I didn't take HRT, I'd probably be done) and it seems my hair only grows to my ears too...Maybe a little longer. But it coincided with the hot flashes. And that is why I take Yaz.... It got rid of hot flashes, which I don't mind a 4 day light period. I sleep well and the Lex. is what also gave me hot flashes, but only when I first started it. This combo seems to work great with fibro/menopause and the depression from chronic pain.
How long were you on Savella before you noticed a difference?Did you have diarrhea?
I have only been on Savella for almost 3 weeks and have upset stomach,,,,which is a side affect that should go away. I hve excessive sweating and hot flashes,,,but I am pre-menopuasal,,,so I am sure that's part of it. My pain level is not any better yet,,,,but it is supposed to be up to 2 months before it fully works. Stay n touch.
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