Health Organization for Pudendal Education

Have any of you taken the drug savella and if so how are you doing with it in regards to fibro pain and the pain from pne

Hi I was just put on this ontop of everything else I am on. Is it helping you.

I have been taking Savella for a few months now. The plan,after seeing a pain specialist, was for me to start on Savella, then go on Topamax and end with Nucynta, all 3. So I started with Savella at very low doses, 12.5 per day for two weeks, then upped to 12.5 twice a day for a couple of weeks, each time adding this minimum dosage in the mornings. I am very sensitive to meds and my doctor has such faith in this med that he wants me to take it very slowly. Still can't avoid side effects, mainly heavy sweating, irritable mood swings, sleep problems (which cause me to take something for that), no nausea or GI effects though. Some oF these symptoms have tapered off, but as I increased to the level of 37.5 in the mornings and 25 at dinner, I found as the day progressed that I could not urinate.Everything froze up, no response from my pelvic floor muscles.With PN, I have always had problems with slow and hesitant urination, but this was dramatically different. I understand this is another possible side effect. I immediately went down on the dosage and called my doctor. Am now taking something to counteraact this problem and it is helping. Or is it the lower dosage of Savella? I will try to slowly go back up again and we shall see. The doctor is shooting for 100 mg/day. After 3 1/2 years of this, i have been through all kinds of doctors, PT, meds, nothing helps. Will try Savella as a last resort, medication-wise. Sometimes the side effects of a medication just add to the lack of quality of life, with no help. Would be interested in hearing from anyone else out there about their experience with this drug. Good luck to all of us!

wrote a post and lost it. So hear goes again. Hi to old friends. It's Cora, took an LOA for a bit. Saw the discussion on Savella and wanted to comment. My neurologist talked about Savella with me but we decided to stay on the Cymbalta. She says she seems patients having significant side effects from the Savella and is rather cautious about prescribing it. Just wanted to add this to the thread .

Cora

Welcome back Cora. I've been thinking about you and wondering how you are doing and how your recent appointment went with the pain management doctor. I just started Cymbalta so I am hoping it will help with my "fibromyalgia" type symptoms as things seem to be getting progressively worse.

angiemcs wrote:Sometimes the side effects of a medication just add to the lack of quality of life, with no help.

I agree!
I hope you're able to find something that helps you, Ang!
Warm regards,
Karyn

Thanks for asking Fatih, I had a really good appointment, two now with my pain dr. What was wonderful is that she really addressed the whole "quality of life" scenario, and was motivated to read up on PN and learn more about pelvic pain. I felt tremendous relief to have an ally and communication now between all my providers- finally feel like I have a "team" in place. The Embeda is working pretty well, and I know we'll have to tweak the dose a bit. But again, I have support now that was lacking, and with anything chronic, the lack of support just doesn't bode well. Just trying to take things day to day- no magic wand available right now.
Cora

Grammy,

I recently was given Savella to try after other failures. Unfortunately, Savella at the lowest dose 12.5mg created uncontrollable crying. After two days...I had to stop. Hang in there.

I posted earlier about Savella. Am now almost off of it, very slow decrease over weeks.I am actually taking half a 12.5 every morning. This drug did nothing to help me, just very unpleasant side effects, sweating, headaches, crying, finally a complete inability to urinate. That was the last straw. Going off has caused some of the same above side effects and more mood swings, but I am fed up with all the meds I have been on. I don't need all those side effects in addition to the ongoing pain.Nothing has helped me,doctor, various PTS, i am very very scared of surgery route. So, back to this ongoing struggle with pain.