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23 year old male suffering from HSP/ vasculitis for 2 months

Posted , 6 users are following.

Nectar1730
Nectar1730

Hi everbody. I am a 23 year old male suffering from HSP/ vasculitis. I have been suffering with this for over 2 months now and i am becoming worried it may not clear. I first noticed the red blood spots (perpura) on my lower legs which within days spread to my thigs. I have visited my doctors on a couple of occasions and they did blood tests. They took blood tests to test for a throat disease, kidney failiure, blood clotting and to check my white blood cells. They all came back negative. She diagnosed me with HSP and vasculitis. She mentioned i may need steriods to clear it up but i was never given them. She also took a urine sample which had a trace of blood in there, so my kidneys were checked again and everything was fine. A couple of weeks went by and it wasnt bothering me anymore, then the weekend came. I went to a football match which involved alot of walking. That night i was in agony. I couldn't walk as my knees and ankles were hurting really bad. The perpura had scabbed up and my feet were swollen. I decided to visit A&E. They did more blood tests on me to make sure nothing had got worse. The doctor came back and told me everything was okay. This doctor never mentioned the steroids but gave me anti-inflammatories (for the inflamed blood vessils), which never worked in the end. That was the first time my joints started to severley hurt. I was off work from this point on. After 5 days rest my perpura pretty much vanished and i felt new again, so on the saturday i decided to go to the football match again. Bad idea, as that night i was back to square one in agony with my joints and swollen feet. I didnt go back to the hospital but decided to book and appointment with my local GP. Monday morning i was feeling a little better again after a days rest. I went to see the doctor and he read all my results from the hospital. He checked my stomach to feel for swelling and he said everything semt fine. I asked him if there was any medication to take for the perpua or the inflamed blood vessils themselves, but he said it would just clear on its own. He told me it could take a while to clear but will eventually clear by itself. I mentioned the steroids but he told me he didnt want to give me them as they can have negative side effects? So it confused me as 4 different doctors all had different oppinions on what medication i should take and shouldnt take. I have been off work for over a month now and not sure i wll be able to go back anytime soon as i have realised my joint pain comes back whenever i do any form of exercise. Last night i then started to have indesribable pains in stomach. I couldnt sleep and kept bringing up alot of wind. It started to make me feel sick and eventally i was slightly sick. I also had diarrhea. The last time i went to the toilet it was a redish colour which of course worried me. I am really starting to get abit depressed of this now as i can't do anything out of the house, i am literally bed ridden. It is such a shame to see other that are suffering from this as well, but kind of a relief we're not alone in this. Does anyone know how long it can take to clear up or when the symptoms start dying out? Or any ideas on to help with the pain and perpura in the process of it clearing up? Thank you for taking the time to read this and hopefully you find answers too.

1 like, 14 replies

14 Replies

  • harleycw
    harleycw Nectar1730

    Posted

    Happened similar for me. Doctors sucked. Basically, I ended up describing symptoms and posting picture of my foot to some ask a doctor app and they confirmed it was likely hsp and still my doctor would not listen and not give me prednisone.I ended up going to CVS physician and telling them what I had then they gave me prednisone and it cleared it right away. I had the red spots real bad on feet, bottoms of feet incredibly sore, joints aching and it was triggered by sore throat and reoccurred when i exercised. Basically although they call prednisone a steroid it is opposite from muscle building steroids which are anabolic. Pednisone is catabolic and will shrink you and make you put on fat. Anyway, I eventually found an allergist and immunologist and he knew right away what it was and prescribes prednisone each time. I get it too frequently but taking a quick course of pred clears it up reach time. I am over 40 though. Hopefully at your young age it will eventually go away and not come back. Prednisone suppresses your immune system since it is basically overreacting. I am also finding some things are triggers and bring it on like chocolate unfortunately. It is possible that for allergies and getting colds that triggers the immune system thus leading to the overreacting HSP response. I suggest get the prednisone and google for prednisone and HSP studies as they show thanking it early correlates to less issues later if you get worse. One last note, when you take pred it is usually a taper meaning you take something like 5 pills, 5, 4, 4, 4,3,3,2,2,1,1. Please follow what the doctor states, a sudden stop is bad for you. Do lots of google searching and you will find much more info than general doctors know. Good luck and keep us posted on your progress.
    • Nectar1730
      Nectar1730 harleycw

      Posted

      Thank you for posting. This is really interesting as i have read about Prednisone on the internet when i was self diagnosing myself. Not sure why different doctors suggest different things though. What do you reccomend i do if the doctors don't suggest to prescribe me with prednisone? I forgot to mention that my GP has arranged for me to see a dermatologist, not sure if you know whether they will help or not?
    • harleycw
      harleycw Nectar1730

      Posted

      It turns out that when I was your age I went to a dermatologist when I had what I thought was a red rash maybe due to some vitamin supplements I had just started taking and I just felt awful. They said they had no idea what it was even getting another opinion from the other doctor and further they said that the red marks would likely leave scars on my legs forever. Well only when the bumps get so bad and concentrated in spots bad enough they can cause some lasting damage but even that cleared up for me eventually. Sounds like your doctor is terrible. Go see an immunologist or tell them that it's what you want to be referred to first. Or just go see one on your own if they won't refer you. It will be a life changer.
  • Magstah
    Magstah Nectar1730

    Posted

    Hi

    sorry to hear you're having such a bad time with HSP. I've been diagnosed with it very recently. Having had cancer, I don't want to take chemo drugs or steroids because of the side effects. I've read a bit about people not using dairy foods, or eating chocolate, and about them taking vitamin D and Calcium supplements. 

    I've quit using milk for a week now, and been taking soya milk/yoghurt instead. I've started on vitamin D and Calcium supplements. I can honestly say I am starting to feel better. Whether this might just be because the HSP is gradually clearing up on its own, or because quitting milk and taking supplements is working, it;s hard to say. I do know I feel better, so it at least hasn't hurt me!

    Exercise wise, I am using an exercise bike at home, and doing stretching exercises instead of impact exercise like running or football. Again, this hasn't hurt me at least. Maybe give some of this a try and see if it helps? The one thing I do get is stomach cramps at times. Usually if I have drunk coffee or tea wihout having eaten.

    Good luck with finding stuff that works for you.

     

    • Nectar1730
      Nectar1730 Magstah

      Posted

      Thank you for posting! Im sorry to hear about you as well, having HSP after cancer must be terrible. I have been taking some vitamin C tablets as i heard that it can help but i've only been taking them for a short perod of time so not really noticing any difference yet. Im not sure i dare do any exercise at all! The joint pain and perpura always seems to come back even if i stand up for a short period of time. I'm also starting to think that maybe alcohol is affecting me as everytime i've been at my worst it's been after walking and drinking (at football matches). I will deffinitley stop eating dairy products and maybe change my diet all together. Just need to experitment with different things to see what helps! Thanks again for posting and hopefully you find something that helps.
  • linda29209
    linda29209 Nectar1730

    Posted

    Hi, sorry to hear your symptons for his disease are getting worse. My 19 year daughter was diagnosed in Dec last year and the disease is still active in her system. She has been on steriods (prednisone) since Dec and has now started on immune suppressants (Mycophenolate). She also takes Omeprazole which helps her tummy. She had a kidney biopsy this week as there was protein and blood in her urine, so she needs to be checked to see if there is any damage to her kidneys. Her rash has been really bad but we are starting to notice that the flaring is fading quicker. She has literally been in bed since December as too much movement brings up the rash (which is also inside in her bowel/intestines). Also avoid alcohol. You really need to get a doctor to refer you to a Rheumotologist so they can treat you. So far we have been through A&E 7 times and admitted into hospital 5 times. Don't be fobbed off my doctors who do not know enough about this condition. Best of luck.
    • Nectar1730
      Nectar1730 linda29209

      Posted

      Thank you for replying, i am sorry to hear about your daughter. I visited A&E plenty times as well and i was told different things by different doctors. They always came to talk to us then didn't return for at least an hour later. Me and my girlfriend must have been in hospital over 5 hour at one point. My rash (purpura) flared up after excessive walking and drinking alcohol, i haven't drank any in over a week now and they have faded. I started back at work on shorter hours, when i got home i noticed pupura on my feet but no way as much as there would have been about 3 weeks ago. I have just been trying to pin point what i think triggers it off like drinking, smoking, eating fatty foods and cutting it all out. I think thats my best advice to give somebody. I never thought of a rheumotologist thanks for that i will look into it. Hopefully your daughter won't be suffering for much longer! Take care.
  • kelsey46525
    kelsey46525 Nectar1730

    Posted

    Hi, i am sorry to hear that you are suffering so badly. I am also 23 but i am female. Luckily I was diagnosed within three days. I have had HSP three weeks now - I am currently not taking any medication due to waiting on kidney results. I recommend arnica as a herbal medication - it's been a God for reduction of any bruising and swelling in my lower body, two days on the tablets and I am walking without pain. One of my biggest triggers is booze, I had drunk the night it flared and I have drunk once since and the pain is just not worth it. 

    I have also upped my intake of fruit and veg to between 8-10 a day and ensure I get extra sleep. I know it sucks being 23 and living like your 60. But i have been told if you remove all triggers and rebuild your immune systems you can return to normal. smile 

    • Nectar1730
      Nectar1730 kelsey46525

      Posted

      Thanks for replying! That's a great relief hearing the immune system will return to normal. I haven't been told any good news since having it, other than to have plenty of rest and should clear up its self! I have found out that alcohol is my biggest trigger as well, unfortunately. I haven't had joint pain in about a week now because I've been keeping off the beer so fingers crossed! I have returned back to work on shorter hours and all seems to be well at the minute. There was abit of perpura on my feet after work but nothing compared to how I would of been about 3 weeks ago. Good luck on your kidney tests and hopefully you won't be suffering for too long.
    • kelsey46525
      kelsey46525 Nectar1730

      Posted

      I have been put under the assumption that the more you remove now the faster the recovery. Orginally being told that i could drink was fine - but considering the lack of knowledge for this in adults i believe it wasnt noted as trigger as how many ten year olds drink. It would be good to keep in contact in order to figure out anything that could help between us.My doctors are pretty hot on this with me so i am sure i will recieve help faster - If i can offer anything further down the line i will be sure to offer my knowledge on. Good luck back at work!!
  • harleycw
    harleycw Nectar1730

    Posted

    More fruits and veggies - Good

    More sleep - Good

    Less or zero alcohol - Good

    Arnica? - It's no better than a placebo, but then again, placebos are known to have some positive effect as long as you believe smile

    Keep doing your own research.

  • kelsey46525
    kelsey46525 Nectar1730

    Posted

    Arnica has worked for me - suffering from swollen ankles and knee since I can remember. I do ballet and it has always help speed up my recovery. 

    With something like HSP obviously it's not going to be a long lasting cure but it does help with every day life.  Up to who ever if they try it but now working in events and being on feet it's has made all the difference 

  • sky008
    sky008 Nectar1730

    Posted

    I've been suffering with this issue since June and it keeps getting worse. I've been to 11 dermatologists now, many of which prescribed steroid creams/gels, which just served to make the issue worse. The only thing that gives me relief is being off work for a week and not walking as much, it starts to clear up, the moment I'm back it work, I'm back at square one and it's like I've made no progress at all. It returns on the very same day.It is concentrated on my feet and ankles and by the end of the day my feet/ankles feel heavy/swollen. I can't pin point any triggers, other than being on my feet, which makes it worse. I do not drink and have never in my life.

    Can you please give me any advice on what you did to heel the issue, if you managed to heel it. (I hope you did, cause it's really frustrating).

    Any help or advice you could give me would be highly appreciated.

  • sky008
    sky008 Nectar1730

    Posted

    Did you ever manage to find an effective solution to your issue?
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