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I have had Hsp since the last 9 months, and there seems to be no end of it.

Posted , 10 users are following.

shreesa21736
shreesa21736

I have had Hsp since the last 9 months.The first 3 months were quite painful. I had severe abdominal pain, joint pain. I was giving my AS board examinations then. I had to take steroids to relieve myself from the pain. I was hospitalized due to my gastrointestinal involvement. I was recommented to take 60 mg prednisolone for a a month and to eventually taper off the doses taking about a year to completely stop my medication, however due to high side effects i had to stop after 5 months. 

Since then i have consulted different nephrologist, rheumatologists and have been doing different bloody tests. My hands look bloody due to the injections. There seems to be no end of this. It hurts even now. Whenever i get new rashes, my body feels numb and heavy. I have quite lost the interest to do anything at all.

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  • Cibelle
    Cibelle shreesa21736

    Posted

    Hi! Im a 24 year old with this sad I was just wondering after I read this post if you are still going through this? I have for 10 months and ughh

    ... f*cks you up mentally and physically

    • shreesa21736
      shreesa21736 Cibelle

      Posted

      i know, its been 14 months for me but the rashes seems to be endless. Well its really hard to keep up with life.
    • AndyMcUSA
      AndyMcUSA Cibelle

      Posted

      Yeah I am still going through it. At the moment my docs are testing me to see if it has moved to my joints. It's the upside and downs and setbacks that are hard mentally and feeling physically ill onany different levels 24/7 is hard to manage also. I have reasonable insurance and get 6x counselor visits free a year, so am going to try that. Just to try and get some mental tools to help me.

      Is that an option you have available or have tried?

    • AndyMcUSA
      AndyMcUSA shreesa21736

      Posted

      I have only had it for 7 months and it had been really quite hard. Do you have a good support network?

      When I was getting rashes they manifested worse the more active I was. After 2 months I finally went to OHSU Oregon Health and Sciences University hospital and they moved super fast, putting me on daily cytoxan due to kidney involvement and 80mg of steroids daily. They kick started my system by giving me huge intravenous doses of steroids for two days. Did that happen with you?

      OHSU have a vasculitis research group and all the different groups from nephrology, rheumatology and Dermatology all pulled together.

    • shreesa21736
      shreesa21736 AndyMcUSA

      Posted

      im sorry but i dont have any support networks. Yeah i also was giving high doses intravenous drug for a week i guess. That has occurred twice. I was given 60mg of Prednisone due to my kidney involvement. I was supposed to take the steroid for a year but i started having steroid toxicity. I had moon face, buffalo hump, fungal infections, white coat on my tongue. My breathe used to smell of medicines. That was so disgusting. Its a lot better but it has not healed yet. The rashes are really annoying. I have been getting frequent antibiotics for different infections. I dont even remember all their names, they were ever changing. I took amoxicillin recently for 10 days.
    • rocky31676
      rocky31676 AndyMcUSA

      Posted

      Andy, Do you have abdominal involvement along with kidneys ? 
    • AndyMcUSA
      AndyMcUSA rocky31676

      Posted

      Hey Rocky

      I do have nausea most of the time, and I had some trouble swallowing early on, but not any abdominal involvement that they have found, although they were con erred with that originally. Right now I have been going through a lot of joint pain that seems to be slowly getting better. Talked to my rheumatologist last week and she wanted to out ne back on Prednisone, but I got an agreement with her that she would wait two weeks to see if I keep improving.

      How are you doing?

    • rocky31676
      rocky31676 AndyMcUSA

      Posted

      I have lots of abdominal involvement and skin burning sensation, on lower body, and sometimes joint pain. I have not taken anything yet and hoping it will go away but without any success yet. 
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