Monday I start a clinical trail

Discussion in 'Fibromyalgia Main Forum' started by buddylee, Oct 28, 2005.

  1. buddylee

    buddylee New Member

    for keppra it an Antiepilepsy Drug , has anyone triend it, or heard of it
  2. CAAnnieB

    CAAnnieB New Member

    Hi buddylee,

    In 2003, I was hospitalized at Stanford Hospital (Palo Alto, CA) for pain. The Dr's felt the majority of my pain was from FM. Their stance is that Narcotics are not an appropriate treatment for FM pain (in fact they told me Narcotics worsen FM pain), so while I was hospitalized, they tapered me off pain meds & onto Keppra. They have had good success with FM patients & Keppra for treating the FM pain. I was put on the maximum dose & then sent home.

    Well, I went through a terrible withdrawal period from being taken off several meds too quickly (long, sad story), but eventually I was able to take the Keppra again. Unfortunately for me, the side effects were too severe for me to remain on it. It DID seem to help my pain tho'...

    I tried several times to take Keppra, but each time brought me the side effects...The worse side effect was stomach irritation. I have been battling Chronic Gastritis for about 4 years. Most meds make my stomach worse & Keppra was no exception, so I had to stop taking it.

    Where are you in the clinical trial? UCSF is doing a study in San Francisco. I think it's weird that they are studying it, yet Stanford routinely prescribes Keppra for their FM patients!

    When I joined this board, I asked if anyone had been prescribed Keppra & nobody had. I think it is a fairly new antiepileptic med & it is not commonly given to us FMers. Maybe after they have published clinical trial studies supporting it's effectiveness in treating pain; more Dr's will prescribe it to Fibro patients...

    Good luck! I hope you respond favorably to the Keppra & are able to get pain relief.

    [This Message was Edited on 10/28/2005]
  3. buddylee

    buddylee New Member

    yes UCSF, is where I'm going , I live in San Jose.
    I dont even want to think what SF is going to be like on mon (10-31) Hopfull we will out of thier early before the Freaks are awake.

    I've not heard about pain med being bad for FM'ers?
  4. CAAnnieB

    CAAnnieB New Member

    Good luck with participating in the study. Will you definately be on Keppra or is there a possibility of being given a placebo? Hope you get the med! I also hope the traffic isn't too bad for ya!

    I very briefly lived in the San Jose area in 1982...I was working retail management in Cupertino at Valco Fashion mall...I lived in Sunnyvale & then downtown San Jose for a few months. I quit retail after that Christmas season & moved up here (Sonoma County) to live with my sister. I remember how awful the traffic was when I drove from S.J. to Cupertino! Now, it's like that up here too!

    As far as I can tell; Stanford is in the minority with their anti-pain med stance for FM. I went to their Pain Clinic for my extreme pain treatment. They were not upfront with me about their philosophy until I was in the hospital & they were taking me off my pain meds! I do not have good things to say about my experience with their Pain Clinic...I no longer go there & would not recommend it to anyone.(For various reasons, not just their position on meds for FM)

    With that said...I actually have done better being off the narcotics! It's a combination of a lot of things...I no longer work (wish I could), I now pace my activities, etc, etc. I am taking 2 prescription muscle meds & oodles of natural supps. There are days when I wish I had a pain med around, but instead I up my muscle relaxer & it seems to work. In general; my pain levels are way lower than 2 years ago. Still not great, but better!

    If my stomach heals; I would try the Keppra again. It really did seem to help.

    Good luck at UCSF! Keep us posted.

  5. FM58

    FM58 New Member

    Hi Buddylee,

    A neurologist prescribed Keppra for me as a migraine preventative a while back.

    I was on it for about 4 months or so, I had to stop because of the side effects~not trying to scare you off there Buddy~I tend to have difficulty w/ a lot of meds. (It didn't prevent my migraines either!)

    Is the trial for pain management in fibro?

    Wishing you the best of luck in the Clinical Trial!! :)

  6. buddylee

    buddylee New Member

    Its a trail for FM, and I mite get a sugar pill.

    I think most pain mangment programs are realy get you off pain pills. I went to the pain mangment program at Kiser (on my birthday) at the time I was taking Ultracet (I had waited months for this Apt.) The socalled Doc came in and did his 15 min. apt..... as he was leaving I said Hay is thier anything better I could be taking for pain.... No what your taking is fine.

    I went to make a complaint (I was loud and pissed off and crazy with pain) kizer rent a cop showed up. I ended up in the ER , a
    ER shrink spoke with me and he wrote me a scrip for real pain meds (he had a friend with FM and knew what going on)

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