Replies To: ANYONE ELSE TRYING SAVELLA FOR FIBROMYALGIA?

purpletustin says

Fri, 20 Nov 2009 06:27:07 -0800

I'm on day 7 of Savella. At the same time I was put on Savella by neurologist who was treating me for sudden hearing loss and mini-strokes (I'm 64) internist took me completely off Celebrex 400 mg. Was using Celebrex for arthritis relief. It wasn't working well after having been on it for a long time. Well, on day 7 I woke up and my level of pain is significantly decreased. I have body mobility again. Don't know if it's the Savilla, the stopping Celebrex, or combo of both.

Long Play says

Thu, 19 Nov 2009 22:51:59 -0800

Lori, Yes, UTI symptoms plaged me for years, but were never true infections. The diagnosis? Interstitial cystitis. At the time many people thought this was a catch all diagnosis when doctors couldn't give a real diagnosis. I was treated for several months and it finally cleared up (just as all my FM, etc. symptoms went into remission.) During the last couple of years I've had some symptoms again. Finally saw a urologist and had a cystoscopy. She allowed me to watch the monitor when she inserted the fiberoptic scope (what a wonderul change from the old cystos). She showed me what interstitial cystitis actually looks like. It is real and it is more common with folks like us. She said mine is not active enough to treat now but if it gets worse I'll go back for more treatment. I too had multiple sinus infections for years. I no longer have these because of two things I do. I take one sudafed 30 mg. every morning. No more as it would keep me awake at night if I did. I also sleep with a cool vaporizer every night. These keep the germs that cause colds and sinus infections from having that perfect place to grow; dried out nose and sinuses from dry heat in the winter and air conditionong in the summer. I don't know if this would work for everyone, but my husband no longer gets colds. It's much healthier air to breathe also, because we finally invested in a really nice vaporizor that has a great filter. We have to change the filter fairly often, but that's better than being sick.The answer to your question is, yes. According to my doctors we have more physical diagnosis than other people,. No one knows for sure why this is but it must have somethhing to do with our immune systems. Though FM has been proven not to be an auto immune disease. Hope this helps some, Lori and that you are feeling better.

Lori says

Thu, 19 Nov 2009 07:38:27 -0800

I had side effects the first time I tried savella. I went off, then after discussing with Dr., we dropped off one of my anti depressants and started over. I didn't have anything other than being really really CRANKY (code for b**tch) but the second time into savella, no problems. If you have other prescriptions, contact your pharmacist if your Dr.'s appointment isn't too soon. They are really good about knowing different interactions and possibilities of them. I stick with one pharmacy (walgreens is who I use) so that they are completely knowledgeable of what I am taking.. and keep me well informed of any concerns of interaction potentials. good luck

Ro says

Wed, 18 Nov 2009 23:04:19 -0800

I have been on a low dose trial of Savella for two weeks now for my fibromyalgia. I find that about 1-2 hours after taking it in the morning I feel as tho someone has punched me in the gut; also feeling that my throat is raw and raspy but not at all feeling sick. Anyone else experiencing these symptoms? How long does it take to adjust to the medication and for these to go away? I do find that I seem to be sleeping more deeply and am less fatigued by day.

Melanie says

Wed, 18 Nov 2009 13:51:01 -0800

So disappointed... I has to stop taking Savella today on only day 3 of the titration pack. The medicine made me feel totally out of it, almost disoriented, beginning about one hour after taking it and lasting an hour. It also gave me a runny nose, incessant yawning (weird, I know), dizziness, goosebumps, some shortness of breath, and it made me feel like I had ice water running through the veins in my feet and nose! I hope to maybe try again someday, but these side effects- especially the feeling out-of it while driving- don't go along with work very well. Has anyone else had these side effects? Did they go away?

Heather Freeman says

Wed, 18 Nov 2009 13:37:26 -0800

I've been on Savella now for about 3.5 weeks, now taking 50mg 2x/day. It is marvelous stuff for me. I still have pain, but it is manageable now. I can do about twice what I was able to before, and am beginning to be able to reduce my dosage of hydrocodone that was my only working painkiller before.

I can feel the antidepressant half working too, but it's a very subtle and gentle support, not the cutting-you-off-from-yourself feeling that so many antidepressants give.

My only side effect is some nausea if I don't eat enough food with the pill, and you know, I'll take that!

I've seen some concern in this thread about suppressed immune systems. I will say that the swine flu has been going through our house, first my 3yo son and now my husband, but thanks to vitamins (the good-quality, whole-food ones - it really does make a difference) I'm still healthy. Fingers crossed that it stays that way.

sharon says

Wed, 18 Nov 2009 13:10:33 -0800

Rebecca, the rheumatologist is the one who should have the most knowledge about this drug. Savella should only be prescribed by a neurologist or rheumatologist, just as a psychiatrist should be the one to prescribe meds for depression, or schizophrenia. I am an RN and I work in the field. Believe me, the drug reps give the most detailed info to the specialists and I woul be more likely to follow what your rheumatologist tells you about his medication. I'm not saying to be alert to any changes, but I am saying that he is the expert. Good luck! I am really doing well on Savella. I'm not pain free but I have not needed my cane to ambulate since I started taking it.

Rebecca says

Wed, 18 Nov 2009 06:36:45 -0800

Lori, I have noticed exaggerated symptoms of simple things too. In reading other's responses, it does seem to correlate with the FM. UGH! Just one more thing to add to this lovely condition.

I saw my primary doc the other day concerning my Mono. Believe it or not, this is an initial case, not something I've harbored over the years. Again, UGH! She said I must have lead a very sheltered life to never develop the antibodies to this. Anywho, we went over everything! She is very dismayed that my rheum doc put me on Savella and the fact that I agreed to retry it. With it being a relatively new drug she says there isn't enough known about it yet to be a guinea pig. She wants me to pay close attention to anything out of the norm. Well, at this point, everything is out of the norm. But in her readings on Savella she says it has a tendency to suppress your immune system. I'm already in a compromised position so she is concerned. She is sending me for more blood work (13 seperate panels).

So far, this second round of Savella seems to be going better than the first. I am actually seeing some pain relief. Not as much as I would like to but at least I am not in severe pain. I guess something is better than nothing. We'll see!

Teresa says

Tue, 17 Nov 2009 22:05:53 -0800

lori--i've had chronic uti's all my life. my dr. told me me that uti symptoms are very common in fibro's it goes along with the lower immune system. any thing that we get is more intense than without fibro...an example would be a simple hangnail in a normal person is tolerated but can be excruciating for a fibro....make sense? so a little bacteria can be like a thousand fold with fibromyalgia. forgive my typing...still suffering from a broken shoulder thanks to the billions of symptoms of fibromyalgia.

Lori says

Tue, 17 Nov 2009 19:56:10 -0800

Hey, congratulations to Linda! And everyone who is benefiting, finding the right thing for you. I am happy with having titrated up to 100mg., I knew 25 mg. wasn't enough for me, and I know if I get too much, I will have the negative aspects of too much anti depressant effect of the savella. I am also on wellbutrin so the two combined.. I know my moods well enough, and have feedback from my family regarding my mood. I don't know if 25mg is enough for you, but ask your Dr., you may find to increase the dose will help you even more, as is was the case with me. Now, a question for all the fibro. patients in the room: My fibromyalgia started in October (13 months ago), but the real big flare up of symptoms which made fibro obvious was immediately following my hysterectomy/appendectomy and bladder repair. Too much physical trauma to the body I guess is the excuse. Anyway, 3 days after that surgery, I was put back into hospital with high fever - tests indicated urinary tract infection, but only a very minimal amount of bacteria. I've had several bacterial infections since then, all of them really whoopping my butt, yet the amount of bacteria is very minimal. Does anybody else have this happen? Love to hear any/all responses, I know I'm not a freak... if I knew that it was all in the course of the normal business of fibro, I would actually be mentally content. Right now, another infection (sinus-and I feel a UTI coming on) it would be nice to know it was caused by fibro.. otherwise, what would cause the itty bitty amount of bacteria to act as if I have a severe infection. Any ideas? Going back for more iron infusion on Thursday. I felt good after last weeks 500mg., and a day later felt sick sick sick. seeya all, thanks.