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Alternate meds to treat symptoms of HSP

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vickey74
vickey74

Hello all,

I am a 39 year old female who was diagnosed with HSP in February of this year.  I have been on prednisone off and on, mostly on, since then.  

I started with the lovely rash on my lower legs and the swelling of my ankle joints.  I had the stomach pain as well, however most of these symptoms went away each time I took steroids.  My rheumatologist now has me on a prolonged treatment of the prednisone in efforts to "fool" my immune system into working properly.  I am very, very slowly weaning off the drug.  I can't wait until it's out of my system as anyone who has used this drug will tell you it is the savior yet bane of their existence.  I can't even remember what it's like to feel like myself, the hormones completely changed not only my weight but my ways of thinking.  

Anyway, I could easily start a new forum on the effects of prednisone but that is not why I'm posting.

If, when I discontinue the prednisone, my rash comes back my doctor wants to try a different drug called Colchicine.  This is apparently a medicine used to treat gout primarily.

Has anyone taken this medicine for HSP?

0 likes, 4 replies

4 Replies

  • harleycw
    harleycw vickey74

    Posted

    I googled HSP and Colchicine and really only saw one result which seemed to indicate it works but is temporary.   

    I'm 40 and got HSP a few times recently.  I used Prednisone tapers and the immunologist recommended taking smaller amounts each time as it works and seems to get better quickly each time I start treatment.

    I noticed my vitamin D levels were low, which I have since corrected.  I could not do aerobic strenous exercise without slipping into another episode, but started sowly lifting weights.  I also noticed my testosterone levels were low, which some have mentioned may have some correlation as immune system funcion reacts poorly.  For me, weight training has naturally raised these levels.  The odd thing I don't quite understand is this interplay between steroids and hormones.  The prednisone is a catabolic steroid which is the opposite of muscle building anabolic steroids. Perhaps (just my own theory), having low testosterone (from not exercising, raising kids, not sleeping, etc) meant I had lower anabolic type behaviour, which also meant I didn't have enough catabolic action to naturally counterbalance and not having enough of either flowing in my system led to poorly functioning immune system.

    Who knows, but it can't hurt to use this logic as an excuse to improve my general body health.

    In summary, the best is to keep testing your various system levels and try to get them into what is considered normal ranges and attempt to slowly exercise more to get your body functioning optimally.  Get better sleep and minimize stress.   All this seems like quite a challenge, but it is helping me (so far).

  • gill86870
    gill86870 vickey74

    Posted

    Hi i have had hsp for over 25 years, re occurring, steroids get rid until the next time, how ever i have been on other drugs that helped as it is an auto immune disease, i too mercaptopurine which kept it away (but aventually my kidneys didn't like it) and then injected methotrexate, how ever this is a really dangerous drug and i hated bein on it. but it did keep my hsp at bay, came off it as caused other problems so back to steroids, 
  • blueflamingo
    blueflamingo vickey74

    Posted

    Hi,

    I tried prednisone (with awful side effects too numerous to mention) and azathioprine (which made my hair fall out) but neither helped my symptoms. Dapsone is not as well known as one of the available medications and its use does need careful monitoring, however, it got rid of my joint pain, stomach pain and the rash and started working literally the day after I started taking it. The rash has started to recur in the last few months (after best part of a year without it) but is not as bad as it was. I've been taking dapsone for about 18 months with no side effects at all.

  • carley32172
    carley32172 vickey74

    Posted

    Hi Vickey.

    I noticed in one of your recent posts that you are from Arizona.  We are also from Arizona and my 13 year old nephew has been diagnosed with a pretty server case of Hsp, he was admitted to the hospital yesterday (Banner Cardon Childrens Hospital in mesa). Who is your Rheumatologist?  He has been receiving a morphine drip every 2 hours for the severe tummy pain and his Rashes are out of control, they are turning into blisters! I know HSP is different in children but any advice to Doctors in Arizona who specialize in HSP would be very helpful, we are desperate for answers! 

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