Question about meds

    • Anonymous
      April 24, 2007 at 3:10 pm

      Hi, I hope someone can answer me about my worry in starting new drugs. I thought I read on here about them, but with my brain not working properly, can not remember. I was dx in May o6 and it “only” hit my legs. I was paralyzed, then fell and broke an ankle. I have alot of pain from knees down and severe drop foot in both feet and use AFO’s when on walker, but mostly use a power chair as my balance is bad.
      I have gotten 7 IVIG’s. I am on Lyrica 150mg 2xday, Cymbalta 60mg and various vitamins. Trying a new Neuro as my original Dr. has left the area. New Dr. gave me a shot of cortisone, and has me on Predisone 20mg every other day, Trazdone 50 mg. He is talking about vitamin B-12 shots. He said my feet are shot and he is going to do “the” tests on my arms, as he does not want me to lose my arms and hands. I am starting to hate needles and little shocks!!
      Will appreciate any words of advice.

    • Anonymous
      April 24, 2007 at 4:48 pm

      Hi Regina – Welcome! I was dx 10/06 and will have my 7th course of IVIG starting tomorrow (I’m starting symptoms, weakness in hands and legs). I, too, fell and broke my ankle. Had a plate and pins put in and boy! do they hurt! Anyway, my neuro put me on Prednisone but after three weeks the side effects were making me extremely jumpy and irritable, so we weaned me off of it. She also put me on multivitamins, calcium, and last month put me on liquid B complex to help control pain. I also take Tylenol 650 mg daily. I am trying not to get on pain meds right now, because I get loopy and fall asleep when I have taken them in the past. While my ankle was healing, I was in a wheelchair and forearm crutches for three months. Fortunately, my neuro works with me and when I start to go “down”, we get me IVIG. So far, this has worked well. Haven’t found the right amount to keep me from getting symptomatic yet, but at least the amounts I’m getting keep me functioning. Know what you mean about the “little shocks” – they surprise you, don’t they? Hang in there! I’m sure others on this forum can give you info about other meds. Good luck and good health!

    • Anonymous
      April 24, 2007 at 6:58 pm


      I hope the new Dr is able to help you get things so that they are manageable. If your still having nerve pain I think your Lyrica dose can be raised as I take that same amount 3 times a day and it really helps me. Are you getting PT still?


    • Anonymous
      April 24, 2007 at 7:40 pm

      Hi Jeremy, I wondered about the Lyrica dosage. I had not seen a reliable Neuro since the end of Oct. when mine left. I tried one in Sioux Falls, but he knew nothing about the disease. He was talking possible Botax??? and told our family doc he thought it was a disc problem. Never looked at my records. So now I am trying this new one. He failed his bedside manners course, but seems knowledgeable. I did PT from mid may until the end of Feb, and they had me doing just one machine and walking 15 minutes. I can do that at home (when I feel like it–bad, bad) I was interested if anyone had cortisone or the additional new meds, if they helped.
      Thanks so much for your good wishes and I send that right back to you.

    • Anonymous
      April 24, 2007 at 10:27 pm


      from your post i assume you have cidp. to me, ivig is better to get than prednisone as long as the ivig works cuz of the many v bad side effects of prednisone. ivig costs tens of thousands of dollars. prednisone literally costs pennies. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • April 25, 2007 at 7:27 am

      Steriods don’t seem to work as well for me but my neuro has combined cellcept **1000 mg 2times daily} along with the IVIg {every 6 weeks} and this seems to make a difference. Good luck in your search for a doc, a good one who listens makes all the difference in the world!