could thisbe what made me worse

    • Anonymous
      June 20, 2010 at 1:03 pm

      thanks everyone for the posts in my last thred [COLOR=”Red”][B]ready to give up[/B][/COLOR] was wondering if anyone had the same problems after conbining these meds. was on 60 mg prednisone since last aug. had 2 months 5 day treatments ivig then went to 3day ivig march i went to 2 day plus the end of feb the dr added celcept 1000 mg a day on top of the prednisone. after starting in my walking got worse it doubled my muscle cramps in my legs to the point i couldnt walk more then 50 feet without stopping because of them. i forgot to mention this in my last post by the end of march i started falling 1 day and balance isnt right i cant walk without holding something. i gave it up and has to start cutting back the prednisone. i couldnt eat lost 40 lbs because even on the insulin it was very hard to keep the sugar under 250 was so bad i had to take the prednisone at night so i could control my sugar during the day. by late afternoon i would go low and was hard to keep the sugar level up. i couldnt eat in the morning once the sugar went up i wouldnt come down. back in the beggining of may i got an infection in my leg from where it was leaking spent a week in the hospital i now have cellulitus the dr wouldnt wean me off the prednisone so they told me how to wean myself the rest of the way off when i was in the er the end of march because i thought there was something wrong and the dr wouldnt call me back. ive been off both prednisone i finished a month ago today but still have the same problem walking. i have so much swelling in my legs but as soon as i got down to 10 mg prednisone the leaking stopped. im rying to figure it out before i go to the new dr in a week thanks

    • June 21, 2010 at 8:02 pm

      Hi Dave,
      Sorry to hear about your problems with the prednisone. Has you doctor tried you on IV pulse doses of prednisone instead of daily dosage? Also, I see you mentioned insulin, which raises the question about the brand of IVIG. All IVIG products except Gamunex are processed using glucose, while Gamunex uses glycine in their processing. I had no success with other IVIG products over the years, but tried Gamunex 15 months ago and it has really helped me. My doc has me on a pretty agressive treatment plan now. Every three weeks I have PE followed by 500 mg IV solumedrol. The the following day I get 100 grams of Gamunex. I also take 2000mg cellcept daily. This protocal has stopped the progression and given me much more energy and stamina.
      As everyone says, different treatments produce different results, but some type of combination of therapies is something to talk with you doc about. Good luck and keep fighting.

    • June 23, 2010 at 11:59 am

      gammaguard uses glycine as well. When getting a sugar test is taking ivig w/maltose etc, you have to ask for glucose specific so you do not appear to be in diabetic shock and have insulin administered in error. It also has been mentioned at the 2008 symposium that cell cept can actually cause cns involvement. Being that you have diabets, could you possibly get plasma pheresis followed by ivig weekly and see how it goes from there? The removal of the steroids might help with the diabetes and it would give you the opportunity to see if cell cept is not working for you. There is always the cytoxan option.