Henoch-schonlein Purpura! HELP! WHEN WILL IT GET BETTER?!!!!! :(

Posted , 5 users are following.

Hey, I finally decided to register for this website.

I'am a 17 year old male, a junior, found out I had HSP on the 3rd week of July; now it have been 6 weeks. I think I caught a cold after practicing a day in the rain(which might triggered HSP).

The first week, I had swollen on my left ankle. A week or two later, I had swollen on my right ankle.

Rashes spread from my feet to my ankle, lower legs, then calves, then inner thigh, then outer thighs, then buttocks, then now working up around my penis, spaces under my belly button, the whole arms, spreading up to my fingers, now some under my feet. My knees were hurting and calves as well, I could barely walk last night.

I play soccer for my high school, now I'am sidelined and resting for almost 2 weeks; because I heard you should rest and drink a lot of water.

I have been to the doctor once a week, past 4 weeks. First 2 urine tests were perfectly fine, 3rd test I had protein in it. 4th test showed it was clearing out. 5th one I had(Thursday, Sept. 5th), I haven't had a call saying anything yet, I also had a blood taken from me that same day.

I haven't had any vomiting nor any pain in my stomach, no major pain past 6 weeks with HSP(I hope that's a good sign).

I had a contact with someone in UK, England. His cousin had it, it went away within around 2 months. I just wish mine would too, next 2 weeks it'll be 2 months.

I'am tired of it, it itches some nights, especially the red ones that grows over the purple rashes. Soccer conference is starting within 3 weeks, I'm the captain and my team needs me, as well. Most of all, I just want to be back to normal again, where I can go out and run and play again, I'am aiming to be a pro. but now I'm having a setback. I want my normal life back, this is just depressing lately.

WHEN WILL IT GET BETTER? HOW DO YOU KNOW WHEN IT STARTS TO GET BETTER? ANY SIGNS? ANY FOOD OR ACTIVITIES THAT I SHOULD AVOID? sad

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  • Posted

    Hi, when I was 8 I had HSP (I think that's the same as what you're getting because I remember it had a very long scientific name) I'm 13 now (posting on my mothers account) and it took me 4 years to fully recover.

    I was in hospital for a month because of HSP, and it's had a lasting effect on me which I'l always have.

    Yes no vomiting is a good sign, if you've bee vomiting blood like I had then that isn't a good sign. It sounds like you're getting better though.

    Back to you're question: When will you get better. That will really depends on how bad you had it in the first place. I'd just take everything slow and soon you'll feel perfectly fine.

    I hope I've been some sort of help.

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  • Posted

    Hey, thank you for sharing. Its almost 10 weeks now, rashes would fade away but new one would come on top of it. Covers my legs, and thighs, now working up over my belly button. My hands and arms, few on my fingers, few on my palms. I've had stomach pain to a point where i have to lay down and try to sleep(which went away the next morning ). It doesn't itch that much really. . . I haven't done any activities that involves running, sweating, tiring. I've gained 4 pounds in 2 1/2 months. I heard its normal for this disease to last about 4-12 weeks, I'm crossing my fingers and hoping next 2-3 weeks, it'll go away, I really want to get back to my normal life again...going out to jog and participates at school events, play soccer again, wanting to be a pro at it but hsp is holding me back.

    My blood test from a month ago? was normal, my urine test on sept. 30th was normal. Now, the rashes from last round have faded, new ones are already getting on top of it.

    This is depressing....really

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  • Posted

    HI-

    First of all, you are really strong to be going through this. Many people might tell you "be grateful, it could be so much worse" (which is true of course, and a good thing to keep in mind) but sometimes it is just not useful. Your suffering deserves acknowledgement--HSP truly sucks.

    I am an 18 yr old female. I was diagnosed with HSP at the beginning of April (the spring of my senior year). I was told that it should last about 1-2 mo., which sounded like forever at the time. Actually, it has been 9 mo. since I was diagnosed, and I am still not officially over it. However, I have been nearly completely vasculitis-free for the past two weeks, so that is very exciting.

    Basically, my advice for you would be to try to get used to the possibility that your HSP will be around for a while. I'm not saying that it definitely will, but can't hurt to prepare for the worst, hope for the best. I know this is not what you want to hear!

    I really feel for you regarding your soccer plans and current inability to play. I would also suggest trying to do some gentle cardio exercise. During the first few weeks of my disease, I didn't exercise at all. However, I started riding a stationary bike, and found my mood improved a lot (which is so important--I would get really depressed about the HSP as you seem to be). Also, I think that in the long run, exercise has been an important part of my HSP recovery (thought I am not officially fully recovered yet).

    In the spring I had extreme purpura, ankle swelling (which was really uncomfortable), and a short spell of intestinal bleeding, and was very tired all the time. After a few months all the swelling and fatigue were gone, but I still had very frequent occurrences of purpura. At this point (9 mo) I have very subtle outbreaks of purpura, probably once a week/2 weeks. I am currently taking a drug called Plaquenil which may be the cause of my improvement, however, I did see much improvement over the course of my disease even before I went on the drug.

    I would just suggest boosting your health and immune system in any way you can (eat very healthy, exercise if you can, get tons of sleep, etc. ) and staying hopeful, while realistic. I really really wish you the best. Good luck, stay strong--Even if it's a longer road that you originally anticipated, I believe things will get better!

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  • Posted

    Hey!

    I have finally signed up for this website too!

    Im a 20 year old female and I was diagnosed with HSP a month ago after suffering with the rash for a few weeks. I have never had it before. The rash wasnt itchy at all and I am prone to rashes and so on whenever I get ill anyway. So initially I didnt think it was anything to worry about and would just fade.

    Then i realised this was different to rashes I had before and getting darker/not fading etc.

    I hadnt really connected any other symptons but since I have been diagnosed ive been getting bad stomach cramps and my knees hurt a lot of the time.

    I had blood tests which concluded my kidneys etc are fine and I just have to wait for it to go away which should have taken 4 weeks. I am past this stage now and by all means not suffering as bad as I have heard others are but its showing no signs of going anywhere sad

    My main issue is the rash - I can deal with stomach cramps to an extent but the rash is making me increasingly upset and depressed.

    I feel ugly everytime i see myself in the mirror or get undressed. Whenever I think its faded a little it just seems to flare up worse the next day.

    My doctor told me to just sit tight and be grateful its not summer which although im grateful for, it doesnt exactly make me feel better.

    Ive recently just started seeing someone new too and i cant say I feel particularly attractive - he doesnt know the full extent of how bad it is on my legs and i just know Im going to scare him off - I look disgusting!!

    Does anyone have any advice at all at how I can deal with the rash? Ive been trying to stay more hydrated - I believe mine fades very slightly when Ive drank more water - and im keeping alcohol to a minimum.

    I just dont know what to do anymore - how can I get rid of it?!!?

    Thanks

    Tash x

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  • Posted

    Hi. I'm a 19 year old female who was diagnosed with hsp in December. Just wondering how you guys have got on with hsp/has it gone? I've had the rashes for 3 months now with no sign of them going. Any time I move or walk around for too long they flare up. I'm taking prednilosone 20mg a day at the moment which is making my face swell and making me gain so much weight. It's so depressing.
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