thoughts on high dose iv methlypred??

    • Anonymous
      March 25, 2008 at 4:12 am

      Hello to you all,
      in my battle with this curve ball (CIDP) i am now on a triple treatment regime which is getting me under control at last and am thankfully getting back to normal. I would say am now about 85 -90 percent back to normal (definitely not as fit as a year ago) but function wise etc. am hoping to have repeat conduction studies soon to co-berate my estimation in function etc. As i am improving and seeing some light at the end of the tunnel (and no, there will be no oncoming trains this year thank you!!!!) i am wanting to start looking at reducing some of these wonder drugs!!!!!(all drugs have nasties associated with them i know but when you must have, you must!) So what do you think? Am seeing my wonderful neuro soon so appreciate any references, current guidelines etc any of you may have archived away that may be worth taking along with me. (am mid 30’s with active young family lifestyle so keen to be on minimal treatment so no nasty sideffects can take hold and bite me in the bum in a few years etc!!)
      Since October 07 (fully paralyzed and bed bound except for head movement and resp function)I have been on:
      IVIG Mon and Fridays (maintenance dose 2gms/kg)
      iv methyl pred 500mg Mons and
      azathioprine 50 mgs 3 times day reduced to twice daily due to High LFT in November.
      (trialled ivig once weekly over 6 week period end Dec/ Jan but deterioration set in again.)
      Am really keen to begin reducing methyl pred (have few weight gain issues, bit of hair loss etc but all still not a prob compared to not being able to move etc) but no major probs with being on IVIG or immunosuppressant.
      Looking forward to your thoughts and comments, and wishing you all the strength you need to stay on top of this hurdle.

    • Anonymous
      March 25, 2008 at 11:47 am

      I don’t know about the combination of drugs but my neuro. tried me on IVIG to start and decided that wasn’t working (was it him or ins.?….. I’ll never know) so he put me on 500mg sulumedrol infusion twice weekly for I think 3 months and has since had me on oral methylprednisilone…am down now to 400mg twice weekly and next time I see him willl probably ween down some more. So far this seems to be working, have recovered probably 85 to 90% of my pre-cidp function, the biggest side effects I’ve seen so far are a slight rash, sleeplessness on steroid day and some nasty hot flashes, again mostly on steroid day, as well as moon face and some weight gain. I have also noticed that while I’m not certain it’s connected my blood sugar and blood pressure levels are now elevated and that has never been a problem before. I guess you have to take the good with the bad but am starting to wonder some days if the cure might end up being worse than the disease.:eek:

    • Anonymous
      March 25, 2008 at 5:52 pm

      so when you had the pred reduced did you go from 500mg straight away to the 400mg dose?? did you notice any difference, ie did you get more weakness, or lose strength etc or other symptoms come back that you had previously?
      cheers again

    • Anonymous
      March 25, 2008 at 11:35 pm

      I was put on weekly solumedrol infusions of 1,000 mg a week for 21 months back in June of 2002. Initially, I was given 5 loading doses of 5 days of 1,000 mg to “jump-start” me. This treatment was only given to me after PE & many treatments of IVIG for 4 months (neither helped me at all.) The solumedrol gave me just enough strength to transfer from a power chair to a commode & into bed by myself (with a sliding board), feed myself very clumsily, & pull clothing on & off. I begged my neuro many times during that time period to wean me off of them, but each time I lost what little bit they had given me to be able to function at home (with help.)

      When he finally did wean me off after almost two years, I first went down to 500 mg for a few months, then 400 mg, then 250, then nothing. By that time I didn’t lose any function, but had been unaware of just how much pain they had been masking. I never did need them again & was so glad to be off of them. I gained 80# while I was on them (still battling with the weight), have scars from a horrible rash I had while on them, needed cataract surgery in both eyes in 2004, had night sweats, mood swings… All in all, they were terrible for me, but they were all that kept me out of a nursing home…

    • Anonymous
      March 26, 2008 at 2:04 am

      My neuro. had me go from 500mg twice a week to 450mg twice a week for 2 months then down to 400 mg twice weekly for the past 2 months. I see him again on may 1 where I suspect he will reduce the dosage again. I have noticed that for a few days after a dosage reduction are a struggle but after my body adjusts to the lower dosage I haven’t lost any strength or function yet, will be interesting to see what happens this time.

    • Anonymous
      March 26, 2008 at 4:40 am

      thanks Pam
      I am fairly new here but have found your posts interesting and your trials with dealing with CIDP over the years inspiring. Your experience on the pred was interesting and I fear for similar effects if i stay on it tooo long. Will definately be putting forward a case to neuro to leave the ivig as is (ie twice weekly) and trial reducing the pred.
      cheers again

      thanks for your notes, am pleased to hear you havent lost any strength or function. all the best for the near future and further reductions.