any updates on people who are trying savella?

posted 28 months ago by sherid

 When I woke upthis morning my hands, feet, knees and ankles hurt so bad I thought I would pass out. I could barely walk. I  have been scared to take savella because of the side effects, which seem pretty scary, but I have become desperate. I had another bladder surgery a month ago and two weeks later gort an antibiotic resistant uti. I was hospitalized and put on iv therapy. I got out sunday, but since the surgery and infection my fibro is extremely out of control. I cried when I left the hospital cause atleast the iv pain meds were helping. I went to my doc today and told him i was desperate and wanted to try the savella. I will start it tomorrow. Hopefully I'll be able to tolerate it and it will help even a little. Then to top it all off while I was in the hospital my son had to be taken to the er. He has swine flu. That was saturday. He is doing alot better now and will be able to go back to school on friday. I am terrified i'm gonna catch it. I'm in so much pain. I don't think I could handle that too. Oh well that was my rant for this evening. lol. Let me know how ya'll savella experiences are goin! GEntle fibro hugs! Sheri

Tagged

Answers

Results 1 - 10

  • Jane

    28 months ago

  • Lynnette

    Hi. I am on Savella, and once my current emotional/financial crisis passes I intend to enjoy the relief it gives me. I am only able to tolerate 12.5mg bid. I am going to try to get my doc to order it 3x/day. When I took it initially, within hours it lifted that "leaden limb" feeling of being so fatigued I can't move. When the dose increased it made me very uncomfortable, and my heart would pound, with erratic beat. I was not wanting to give up, so I have been on 3 mnths. I think cymbalta, savella, and lyrica are being given at doses too high for fibromyalgia. My Lyrica dose after much trial and error is 75mg 2x/day. This allows me to walk better. I hate this message thing, can"t see what I'm typing.
     

    28 months ago

  • Lynnette

    Another thing to remember is that these meds don't make fibro go away. I think that's why we get so disappointed in them. Lyrica helps me have a wider, more normal stride when I walk. This allows me to walk faster, farther, and after awhile, less painfully. Savella, I love it! I was so fatigued and depressed that it felt like my arms and legs and shoulders were encased in cement. That made me nearly immobile. It just wasn"t worth the pain and effort to move. It immediately lifted that, and allowed me to do PT. In the past few weeks, I have found myself getting up more. Getting more done around the house, etc.

    28 months ago

  • Misty

    I tried it and had the nastiest side effects there were. I had to stop taking it after only four days. I could not function at all due to the severity of the migraines and it pretty much crippled me.

    Please keep in mind that all of our medications effect us differently, just as all of our symptoms vary from person to person.

    My cocktail...love that term more than medication list...is Lyrica 300mg daily, Cymbalta 60mg daily, and 12.5mg daily of Ambien CR. This helps me be able to get up and move. I can function more now, than I was able to with previous medications. I am happy with progress, but as Lynette said, sometimes I am disappointed with the medications because I think they are not working because they are not curing me! Look at all you can do with the medications, not all you can't do and you will have better success.

    I wish you the best of luck and please keep us updated!

    28 months ago

  • Rick

    My rheumatologist wanted me to try Savella so he prescribed me a starter pack a few weeks ago. I've only been on it about 2 weeks, but a couple days ago (shortly after getting up to 100mg/day), I felt like I was hit by a train. Never been more exhausted in my life. Even though I got 8 hours of sleep the night before, I had to sleep most of the next day. And I felt the same the day after - dizzy, clumsy, sleepy. I called my doctor today and told him I wanted to stop, and he agreed. I hope I go back to "normal" soon.

    It's kind of upsetting because I had gotten my hopes up for this one. Got to learn not to do that anymore!

    28 months ago

  • Misty

    My symptoms were pretty close to Rick's, with the exception that I had that crippling migraine with all that.

    I have met others who have had success to a degree with it. Some not totally able to overcome the side effects and had to stop after a few months of treatment.

    Lynette, did it cause you any stomach issues?

    28 months ago

  • Lynn

    i dont like what i am hearing about savella. Thanks for sharing.  I ahve not tried savella yet but I honestly dont think I want to.

    28 months ago

  • Lynnette

    Yeah, it's rough on my stomach, but well worth it. Noone should ever be on savella and cymbalta at the same time. (same med). I could not tolerate the higher doses. I'm still on 12.5mg, 75mg of lyrica. I'm supplementing the savella with SAM-e 200mg a day. (may go to twice a day on that). The doctors are just going too high on these meds. It has taken months to get mine adjusted right. At the current dose of lyrica I have minimal side effects (swelling, numbness), no more messed up vision. The savella takes that heavy leaden limb feeling away. Next week will be the test. I'm going back to work. YEAH!!!

    28 months ago

  • Melanie

    I have been on Savella since August.  What I thought were  bad side effects from the Savella was a combo of Savella and another drug that increased seratonin levels.  I had a seratonin overdose.  I have quit the other drug (a sleep med) and decreased the Savella to 50mg, twice a day.  It helps somewhat with pain.  I still have brain fog. That is what really worries me.  Ic cannot think straight, nor can I remember things throughout the day.   I wish something would clear my mind up.

    28 months ago

  • Nancy

    I have been on it for 3 months and it has really helped me with the heavy, can't lift my arms or legs fatigue.   I think it has also helped with some of the "fog".

    28 months ago

Sign In to leave a comment.