1. Community
  2. Blood & Immune System
  3. Henoch-Schonlein Purpura

How to get off steroids?

Posted , 3 users are following.

pelhamed
pelhamed

I am looking for advice on how to get my son of steroids. He starting taking prednisone to deal with pretty horrible pain caused by HSP. He was hospitalized in two ocasions and at the time we did't feel we had much of a choice but to start steroid treatment.

We tried twice to taper the dose off the first time clearly too fast, but the second time we did it very gradually. But unfortunately again when we reached a low dose the pain and rash returned. 

Can he take steroids for an extended period of time? Does anybody have experience.

Any advice is appreciated

Ed

0 likes, 5 replies

5 Replies

  • harleycw
    harleycw pelhamed

    Posted

    Perhaps a little more info supplied could be useful.   For example, I have tapered using 6, 6, 5, 5, 4,4, 3, 2, 1 before and a couple times the taper at the end was too quick and got the rash back HOWEVER, I just went back to around 5 and then 4, 4, 3, 3, 2, 2, 1, 1 and did fine for a while.   Keep in mind, my case was likely due to being allergic to chocolate and any time I even have a lick or tiny dose somehow, I start rashing again dependant on the exposure.    You could have any number of causes as nobody can tell you what causes HSP.   That being said, I would start experimenting with being extremely careful to avoid anything even remotely allergy causing for a while and only rotate things in slowly as rash seems to come within 24 hours of exposure (and this is just one possibility of the end result being classified as HSP).

    People have been doing recent studies on taking fish oil and many other people post on this board about different kinds of treatment.  

    It is unfortunate but until doctors can figure out the different classifications of root cause and how each individual can be diagnosed it seems like we can only start with the doctors and continue to do the best we can individually to determine what works best in each case.

    Definitely go back to the doctor and make sure it's a specialist like rheumatologist/immunologist and not just general practitioner.   Keep us posted !

    • pelhamed
      pelhamed harleycw

      Posted

      Thank you all for the replies.

      with prednisone we started at 5 and went down to 1 over the course of 6 weeks. Now we are back at 1.5. many days of this week we gave him also tylenol of ibuprofen for the pain. Today is the first day that he went without extra pain meds. We will probably contibue at 1.5 for a few weeks before changing anything.

      i;ll keep you guys updated

      thanks for the support  

  • steph76194
    steph76194 pelhamed

    Posted

    Hi Ed,

    My daughter started steroids but had a bad reaction, same type as your son and a tiny dose...so I just refuced by half everyday , then every other til she didn't take then again. She also had blood pressure tabs to weaken the flow of blood through her kidneys as she was her protein was just too high everyday....but even the weakest dose made her faint. Our consultant has said because her kidney is ok ish she can have a low dose of ibuprofen for the stomach cramping but to be honest it hasn't really helped. With this relapse we are 4 weeks in and she is still suffering. I have started her on vitamins myself which she thinks has made her feel better...as a placebo? Who knows but it is going ok. I wish your son the very best, it is a really horrible condition. Steph

    • pelhamed
      pelhamed steph76194

      Posted

      Hi Steph,

      ibuprofen is quite effective with my sons belly pain (tylenol is pretty much useless)

      We felt we didn't have a choice but to try the steroids, after 5 days of not eating or drinking and crying in pain you start considering more risky treatments.

      Steroids at the high level made him very jumpy irritable and HUNGRY. He basically regained all the weight he lost during the hospitalization (about 18%), We started with prednisone at 5, below 2 we did'nt observed any obvious side effects.

      We are planing to start him on the fish oil and also and other alternatives as well as watching the diet like halrley suggested.

      Ed  

    • steph76194
      steph76194 pelhamed

      Posted

      Hi Ed,

      That is great that ge regained his weight....the cramping is really horrible and so painful. Really wish your son well very soon.

      Steph

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.