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Adults HSP Advice

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AnotherOne
AnotherOne

I'm 20 years old and I've had HSP for four months (after initially been told it lasts 4-6 weeks) since my diagonosis life has been a nightmare. I was hospitalised with the most severe abdominal pain I have ever felt; morphine couldn't even settle it. I lost 10kg and was altogether a shell of my former self. Now I'm still taking steroids which I have been on for since January, they're awful and have made me gain so much weight primarily on my face and abdomen which is terrible since prior to this disease I was obsessed with fitness and have had to watch my body and appearance be destroyed in front of my eyes, it's made especially difficult with the vasculitis which never dissapears. I am sick of looking like a freak and having to avoid doing things I enjoy like drinking with my friends, this disease has even caused me to quit university. It seems like a cruel cosmic joke to live normally for twenty years and then have everything taken away. I'm curious of any adults who have maybe got completely rid of this disease and if so how long did it take? Also what medication or treatments are effective especially for getting rid of the rash which is an insistent burden; I have looked into rituximab and want to see a specialist about it but currently the frankly useless unsympathetic doctors want to try me on azathioprine. Any info would be much appreciated.

0 likes, 17 replies

17 Replies

  • linda29209
    linda29209 AnotherOne

    Posted

    My daughter got this when she was 19 and also at Uni. Three and a half years on she still has flares but they are very mild and she can live with them. She deferred for a year at Uni but did go back and is due to graduate this summer. It was tough but she kept going and things really do get better. She has a pretty normal student life and able to go out drinking etc, just knows when to take it easy and rest. She does power lifting and running and that actually helps. She went through so many drugs, steroids, mycofenalate, dapsone and none of them worked. The steroids did initially help clear all the ulcers which were in her gut. She spent a lot of time in hospital and bed-ridden in the first year. Dapsone worked but then she got a major reaction to it. Diet change has made a big difference. Mostly vegan. Very little dairy. No processed food. She does have some ‘naughty’ food but sticking to a healthy fruit and veg diet works for her. It is a horrible disease and everyone is different but it will get better. Do you know what triggered yours? My daughter had a Hepatitis B injection which she needed to do her nursing placement and as she apparently didn’t need it (if they had tested her first!) it sent her immune system into overdrive and caused HSP. I wish you all the best. It is physically and mental a challenge.
    • AnotherAccount
      AnotherAccount linda29209

      Posted

      Thanks for the reply (I'm replying off a different account as I've already forgotten the login details for the account I started this forum with), sounds like your daughter has really been through the wars with this, I'm glad she's doing better now. Does she takr anything at all now i.e. any steroids or immunosuppressants? I've heard a lot about Dapsone mainly that it has great results on the rash but also that it has a lot of nasty side effects and can illicit a bad reaction itself. I'm not sure what caused my immune system to go this insane; the only thing I can put it down to is a couple of days prior to seeing the initial symptom of the rash I let a friend who was ill into my flat because his girlfriend had locked him out. I would be beyond angry if I had gotten it under the circumstances your daughter did though. Other than the steroids I just try to remain healthy by eating a fairly clean diet and exercising as much as I can without causing adverse effects to myself.

    • linda29209
      linda29209 AnotherAccount

      Posted

      She takes no drugs whatsoever. The steroids were a nightmare and hard to get off. She was up at 80mg and had so many IV pulses. It really helps to have a doctor who understands the disease. She is under a rheumatologist and now reviewed every 6 months to check her kidney function. The drugs have terrible side affects.  All the doctors can do is treat the symptoms. Best of luck.
    • linda29209
      linda29209 michael_93524

      Posted

      It did affect her kidneys to start with. She had 3+ levels of blood and protein in her urine. They did a kidney biopsy. Luckily there was only minor damage and now her levels are just a trace or clear. Her rheumatologist tests her every 6 months. She is doing really well now but it took time and the first year was horrendous. She went down to just over 5 stone and was in such pain. It had a hard impact mentally to. But she has become a stronger person and is very positive now. Hope you are doing ok.
    • michael_93524
      michael_93524 linda29209

      Posted

      Well I am asking for my son. He is 15 and has HSP. It is now 6 months. In the first two months he had in two urine tests only traces of protein which cleared quickly. After the two months since Feb he has re-engaged in sports. He plays basketball. Docs say as long as he is not showing protein it is fine.We are now just monitoring and since March we have had up to ++ blood in urine. Doctors say that we simply monitor for now on a monthly basis. I am just wondering if we should insist on cortisone for a couple of weeks to get rid of it. Thank god basketball season is over and he will now relax. Any advise?

    • AnotherAccount
      AnotherAccount linda29209

      Posted

      Thanks for sharing your daughters story, the disease really is horrendous and the doctors seem to know very little about it. Any adult with the condition is practically a medical oddity, it is comforting to know that someone my age has had it and now doesn't have to take anything for it, the drugs do seem to be terrible, I really can't stand the steroids the most I have taken has been 60mg and am now on 30mg; the side effects are so irritating but I'm aware that if I begin tapering off them too soon the symptoms rear their heads again worse. Thanks again for the information just knowing someone is getting by in life with tbis disease is reassuring.

    • linda29209
      linda29209 michael_93524

      Posted

      Hi, I can’t give medical advise but if it was my daughter I would just monitor and not take any further drugs as they just push the immune system. She had much higher levels of protein but it did come down and had no lasting impact on her kidneys. Chat it through with your doctor to see what is best for your son. Initially we took every drug going that the doctors said but eventually when they were not putting her into remission we worked with the doctors to stop them all. She didn’t get any worse without the drugs and over time increasingly got better. The one thing I would say is that everyone reacts differently to HSP so just keep him closely monitored so you can decide what treatments you want. Some of the drugs have terrible side effects. My daughter lost so much hair etc. And in the end those drugs did not fix her HSP. Hope he improves soon.
    • michael_93524
      michael_93524 linda29209

      Posted

      Thank you linda. Your daughters case is very encouraging. The issue for us is that we have to always be on top of our son so he can have a more balanced diet, avoid sugar and drink plenty of water. In the meantime we have to make sure he has a positive attitude.
  • bethc1105
    bethc1105 AnotherOne

    Posted

    I developed hsp when I was 18, I was in and out of hospital for 3 months on and off then managed a clean break of 6 months before developing the rash on my back again. I am no 23, I have had no more relapses but I do have scars from my rash. I have on large one on my foot that looks as if it is a burn and what can only b described as cigarette burns on my legs.  I had to leave my dream job just because my body couldn’t handle it so I completely understand where you are coming from and how you are feeling.  I had looked into treatments to speed up the process of healing but my own gp said the best thing to do was let the steriods do their job. I gained weight, a lot of it but I did notice they helped with the swollen ankles and wrists along with the rash healing process.  I hope this helps 
    • AnotherAccount
      AnotherAccount bethc1105

      Posted

      Hi, thanks for the response. I'm sorry to hear that you had to leave your dream job, the implications that this disease causes are awful; I'm nervous about wearing t-shirts in public due to the rash on my arms, it just looks so bad. I've nearly had this for 5 months now and am becoming sick of it, just wishing I had my life back, it seems like I've contracted a life sentence. What medication do you currently take, if any? And how long did it take for your rash to stop coming back? And I have scars from the initial bout on my feet too, they look like cigarette burns but I'm okay with that it's just the rash never goes or when it does, it just comes back immediately.

  • russell158
    russell158 AnotherOne

    Posted

    I got it at 21, the second year of university, flu set it off, started with the rash that took over, kidneys kept churning out blood and protein. Was watched carefully in nephrology for it, but luckily it never got my abdomen, but I could barely walk my knees were so swollen. The rash went all the way up my legs and even got around my elbows. 

    I was watched so carefully they decided to not medicate me, but painkillers to see if my body would respond without steroids and luckily after 3 weeks the rash started to go. I still get my kidneys checked every year (i'm 25 now) and it left damaged blood vessels inside my nose so I suffer from severe bleeds, but hopefully, an ENT surgeon can resolve that for me soon 

     

    • AnotherAccount
      AnotherAccount russell158

      Posted

      Hope you get that resolved, don't you get the rash at all then anymore? I've been very lucky (well not really since I developed the disease) in the sense that I haven't had any renal involvement, don't want to jinx myself on that though. My stomach and intestines are still mental but not as bad as they previously were. The rash is the worst though as it prohibits you from having a normal life really, that coupled with medication side effects and it's a nightmare. Just want to be clear and go out drinking and partying again.

  • allison31455
    allison31455 AnotherOne

    Posted

    The past 6 weeks I’ve been dealing with this same thing. I went into the hospital because I couldn’t even walk, I was in so much pain and I was swollen it was from the bottom of my feet to my elbows. It’s horrible and  it was getting better but it keeps coming back every two to three days, and tonight while I was out with friends it flared up bad and I can’t even bend my legs. I just wish it would end!! 
    • AnotherAccount
      AnotherAccount allison31455

      Posted

      I know exactly how you feel, I've had this for five months now and the rash is still a nuisance. How old are you, if you don't mind me asking? At 20 years old it's been a nightmare to see all my friends out having fun doing all the stuff I was enjoying until five months ago, and it's destroyed my first year of uni causing me to need to resit. Practically everywhere I look on the forums I come across people who have lived with this condition for numerous years, it's rare to find a testimony of someone of whom the disease has just dissapeared. It's absolutely disgusting for doctors to tell you blatant lies such as "it takes 4-6 weeks to resolve" or that "it resolves itself". I really wish it would just go away.

    • allison31455
      allison31455 AnotherAccount

      Posted

      No worries. I’m 24! I can still go out with friends. I try not to let it bother me. But some days I get really really tired, or some days it’s jusy bothering me so much I can’t do anything because it hurts to walk. Mine stopped for like a week and then just came back. Not as bad though this time. Smaller rashers but still a lot of them. My stomach hurts a lot too. More than normal. And I thinks it’s also messing with my monthly cycle. The problem is that it just goes away on its own and the only thing doctors can do is give medicine to relive pain. 
    • AnotherAccount
      AnotherAccount allison31455

      Posted

      I was pretty much immediately administered to hospital, and was put on steroids ugh which I'm still on, I had really bad gastro involvement so I ended up having about four or five x rays, a ct scan, an ultrasound, an endoscopy (which I never ever want to have done again) and finally an mri. All I can say is that if you're stomach begins to really hurt go to the doctors or ring an ambulance immediately. The abdominal pain I experienced is beyond any pain I've felt before or ever wish to feel again, it was so excruciating there wasn't really anything that could be done to alleviate it; I was even given morphine (enough to last 8 hours they said) I could feel the pain after 10 minutes. That and the constant passing and vomiting of blood and not eating caused me to lose 10kg of weight. So yeah be very careful about the abdominal pain.

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