20 year old male with HSP . What to do?

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Hi. back in april 2016, i was diagnosed with HSP. Since then, I have been hospitalised three times, and I dont feel one step closer to be cured from this disease. I have tried prednisolone for a year, which did'nt work, I've tried dapsone, which kinda worked, but decreased my haemoglobin percentage down to a level too dangerous to continue the treatment. After dapsone I started on something called colchicin, which also made me very sick.

At the moment I don't take any medicine at all, but it's planned that I should take something called Methotrexate. 

My doubt in the doctors abilities to give me the right treatment has slowly increased more and more, and simultaneously I'm gettting more frustrated and desperate to be done with this, and live a normal life again.

I'm searching for some advise. I will gladly share more of my experinces with HSP, if any of you are interrested in hearing it, and i would be greatful to hear which experinceses and advice you have.  

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  • Posted

    Hi

    My son age 16 has had HSP since Nov 15 and I'm relieved to say things are getting better with the current medication he is taking.

    What are your symptoms, stomach pain, rash, joint pain? There's many problems HSP can cause and it's an awful illness to be living with. 

    In Feb this year my son was on a high dose course of Prednisolone but I gather this hasn't helped you. This was to help his kidneys. Also on Azathioprine prescribed by rheumatologist and has not had joint pain or swelling since. Also takes Enalapril this is to reduce protein in his urine. When he had bad stomach pains he took Ranitidine 300mg (agreed by hospital) which helped. 

    I hope this is helpful to you and you soon see the end of this terrible illness. 

    Good luck 

    Helen 

    W

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    • Posted

      Hi Helen. 

      Glad to hear your son is getting better, and thanks for your reply.

      I have had all the symptoms you have mentioned, though my inner organs seem to be out of danger now. My biggest problem is the rashes and joint pain, which occurs when drinking alcohol, or doing anything physical. 

      It sounds like the Azaphioprine might could be what I need. I will ask the doctors about that, and the other medicin you mentioned. 

       

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    • Posted

      Hello again 

      Well it's worth a try, he has to have regular blood tests but that's fine if it keeps the illness under control. Unfortunately from what I've read alcohol does bring out the symptoms more so maybe keep it moderate if possible! When my son has been on his feet a lot or tired I think his rash comes on more but fades after a couple of days. His arms and legs are pretty clear at the moment and even went swimming yesterday with his friends, something he hasn't done since getting HSP. 

      Definitely ask to be put on Azathioprine. 

      All the best 

      Helen 

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  • Posted

    Hi, I'm 20 and a guy as well, I was diagnosed with HSP in January and in the time that I've had it I seem to have gotten nowhere; how are you doing now and what medications do you take?

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  • Posted

    Hi Magnus  I know exactly how you are feeling  I also have hsp I have the second bout of it  like you I feel frustrated by the doctors   I first got hsp in October 2017   And was given antibiotics for a throat infection  after that I had glandular fever and then scarlet fever   And then the awful rash started  I phoned nhs24 who told me to go to the local hospital   (I thought I had measles lol)  they ran tests and sent me home and said to go back to my go 2 days later for bloods and blood pressure as my  blood pressure was high by this time I couldn’t walk as the pains in my legs were excruciating   The dr couldn’t see me(another story) so I presented myself back at the hospital  I was told that they though it was hsp  and to  see my gp in a couple of days 

    My gp didn’t agree with the diagnosis and sent me away  once agin the pain was so severe I went back to the hosp who ran more tests  and did confirm it was hsp. Back to the gp and he still said it wasn’t even though the hosp has emailed all the blood results etc. Long story short I was left for 3.5 weeks in agony with huge ulcers on my legs arms and stomach  I was put in to compression bandages for  10 weeks   And put on to morphine and yet  he still didn’t agree with what I had   The dr later told me that I was close to losing my leg as the ulcers was joining around the ankle and blood wasn’t getting to it enough ! 

    I started with the pains in my legs and kidneys 3 weeks ago  so I have had 3  doses of antibiotics blood pressure tablets and now steroids  

    I feel

    Like I am a nuisance to my surgery and have lost all faith with them  but due to where I live there is only 1 surgery in my catchment area 

    I think that they need to look more in  To this disease as they just don’t know enough about it 

    I hope that you get a better treatment than what I have had 

    Sorry that this is war and peace ??

    Take care young man 

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