Older adults diagnosed with HSP

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I was diagnosed with HSP in 2013 at the age of 38. I had all the typical symptoms including rash, joint pain/swelling, severe abdominal pain and kidney involvement. I was treated with high doses of Prednisone which helped things settle down but I'm still unable to come off of them completely and constantly feel like crap. I'm looking for other adults like me, who are struggling, to connect with and compare notes. 

On a side note: Has anyone else been diagnosed with another auto-immune disease at the same time or not long after their HSP diagnosis? I had auto-immune Thyroid disease about 16 years ago but am wondering if I have something else going on now too.

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  • Posted

    I'm really curious as to treatments any older adults have received. Prednisone only, Methotrexate, Cytoxan, etc.? How long did you take them, what was your response and did you get to a state of remission (so to speak?) The lack of research and knowledge on HSP, in adults, is very frustrating to me because I'm still suffering 5 years later and doctors don't know what to do. Severe fatigue, occasional rash flares, joint pain/swelling, all inflammatory markers still markedly elevated but all other tests come back "normal." Thank goodness my kidney function returned to normal after a few months and has remained normal since my initial diagnosis but I would not be surprised if that changes if they can't get my inflammation under control.

    *Sorry for the rant....thanks for listening. rolleyes

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  • Posted

    Sorry I started this and somehow accidental hit send. I am on my second round of steroids. I hate them. I don’t sleep, I’m hungry all the time. I get bloated. Tuesday I fell asleep at the wheel on the way home from work and totaled my car. Broke a few bones, bruised  all over but thankful no one else was hurt. My life has changed drastically because of this Henoch Schonlein Purpura. I was diagnosed with Fibromyalgia around 13 years ago. It too is an autoimmune disease. I’ve been told normally a round of steroids takes care of it sending it into remission, although with adults it’s so rare they don’t have a lot of data. All I know is I can’t do what I used to and it’s maddening.  I’m so tired and achy all the time. I am on my last week of this 6 week course of steroids and I don’t think I can ever do them again. Although kidney failure doesn’t sound like a good alternative. 

    Praying for you


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    • Posted

      OMG Pat....I'm so glad you are okay! That must have been so scary for you. 

      I started on 1000mg infusions of Prednisone when I first got sick and they slowly weaned me down to 10mg, which I stayed on for awhile. Eventually I was feeling better and worked with my doctor on trying to wean off of it slowly. I was never able to get below 5mg without significantly affecting my quality of life. My joints would swell and become painful, making it hard to walk, and my muscles would ache. So here I am 5 years later still taking Prednisone. I had issues for awhile before I had the HSP, suffering from severe body aches, fatigue, joint pain, etc. and they were never able to diagnose me with anything other than elevated WBC, Neutrophils, ESR and CRP. All of my other blood tests, which have been very thorough and done multiple times, have always come back normal. 

      On a side note: Since I posted this I have since learned that A LOT of people who have had Lap Band surgery have suffered from autoimmune diseases after having it put in. I also have a Mirena IUD. Both of these things were implanted before all my problems started and both of these products contain silicone. I'm going back to my surgeon and am going to have the Lap Band removed, as well as my IUD. I know that there is no scientific evidence saying that this is a concern but it can't hurt. I'm at the point I have to do something to help me feel better!!

      I hope you can get some help....talk to your doc about Methotrexate. My Rheumatologist has suggested I try it before.

      Praying for you too,


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