Does HSP ever really go away???

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I’m 21 years old and I just recently got diagnosed with henoch-schonlein purpura. This started in December with severe joint paint that almost completely immobilized me. My mom took me to the ER and they tested my SED rate and it was elevated so they referred me to a rheumatologist, prescribed me steroids and sent me on my way. Steroids helps the joint pain and in a couple of days I was back to normal. A few weeks later I developed this rash on my right foot, I thought I must be allergic to something so I stopped everything that I thought could have caused the rash. It kept getting worse and moving up my leg. Didn’t hurt or itch it was just annoying to look at really. Then my right foot started swelling and i was hardly able to walk on it and I felt exhausted and drained all the time. Finally got in to see my primary care doctor and he ordered a skin biopsy (keep in mind it is mid January at this point) for my rash along with a buttload of other blood tests. Skin biopsy showed that I have HSP so my doctor ordered some tests on my kidneys to make sure the HSP hasn’t caused any damage to them. Tests came back from that normal. So he prescribed me more steroids and told me to come back in four weeks. The rash has cleared up from my foot-butt and was rash/joint pain free for about a week and a half. Fast forward to today, the rash is now on my left foot to my calf and my left foot is so swelled that can’t walk or move it hardly. And he wants to check my kidneys every two weeks. He said that this will eventually clear up and I will be better but is that true? I thought autoimmune diseases were life long? I just want to know if I will be dealing with this rash and joint pain and constant exhaustion forever. I’m thankful my kidneys are fine so far but is there a chance they could start to go bad? Or am I in the clear? When/if I ever go into “remission” will I have to worry about this flaring up again? Also my doctor said that the HSP was caused by me having strep throat at the beginning of December. I live in a very small town so the chances of me finding someone here in town with this disease to ask for advice is very unlikely sad 

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  • Posted

    Adding to this, I have not seen my rheumatologist yet. The soonest i could make an appointment was March 26th. 
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  • Posted

    I had it a bunch of times and then been clear for a couple years now and I'm at least twice as old.  This HSP is really weird.  It's like the body just goes bonkers and overreacts with immune system until it has enough of a change to rest and get back to normal.   Avoid allergens and alcohol, minimize sun, get lots of rest, take those corticosteroids on trailing doses when you have flare ups.   Ensure you have your vitamins, including vitamin C and folks have recently said ensure you have fish oils.  Also, I would recommend an allergist/immunologist over the rheumatologist but you are also on steroids already so that's mostly the only thing you can do anyway ensuring adequate dosage and checking with regular blood tests to ensure no kidney involvement.   Hopefully, you will just ride through the existing occurrences and then never have it again but certainly get as much rest as you can to let body fully get back to normal.  Good luck !

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    • Posted

      Thank you for your reply! Why do you recommend a immunologist/allergist over rheumatologist? I take lots of vitamins but I will add fish oil to the mix for sure! Can’t hurt right? They have me going every two weeks now to check my kidneys. My doctor is hopeful that my kidneys will stay good. This disease definitely sucks and I’m glad to hear that you’ve been a few years without any reoccurrence! Does it not bother you at all now? 
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    • Posted

      When I first had this issue many years ago, dermatologist experience was not great.  They had no clue what it was and told me I would have scars for life AND they even had the partner doctor in for another opinion.  This is not a skin issue nor is it likely something for a rheumatologist although that would be closer than dermatologist.   When I finally just went to an allergist/immunologist the doctor knew exactly and immediately what it was, how to test for it showing the IgA activity and knew how to treat with appropriate Prednisone and dosage with focus on getting the dosage correct.   Especially if you can't get in to see the other doctor type, just try for immunologist.  This is due to overreacting immune system anyway so why not go to doctor that is a specialist in immunology?

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  • Posted

    I know this disease can be frustrating...trust me. I'm almost 33 years old and I've had it for 7.5 years. I'm a rare case too. Steroids do not help me at all. Each break out is worse and worse. My rash covers my body neck down and it burns terribly internally. I wish I could tell you it goes away....for most it does. I am a patient of the Mayo Clinic in high hopes they will be able to help me figure this disease out. I encourage you to hang in there. Seek a rheumatologist and dermatologist and keep a check on your kidneys.

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    • Posted

      Thank you for your reply! I cannot imagine going through this for 7.5 years... I’m so sorry. I really hope the Mayo Clinic can find you some answers! About the only thing the steroids really help with now is giving me some energy. The rash has a mind of its own and it’s awful. I’m fortunate that it’s only been on my legs-butt and not as high up as you’ve had it. You hang in there as well! I will be sending you lots of good vibes! Every time I think I’m in the clear it comes back. At the point it feels like it’s never going to end and I’m sure you feel the same way. I see a rheumatologist at the end of March and sadly that’s the soonest they can get me in. I will check into seeing a dermatologist as well though!
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  • Posted

    Hi Sophie, I'm sorry you're going through this. It really does suck. Also, steroids lower your immune system so recently, I've gotten sick again straight after a round of HSP which may or may not trigger another episode of it. As you mention, it's often triggered by a chest infection (I read in a third of cases).

    I'm 33 and have had it 4 times in 5 years. The first time was absolutely awful and after $5k in medical bills, I self-diagnosed by googling 'purple rash on ankles'. Can you believe it?!

    I just went to a nephrologist today and they said if you're kidneys are doing ok, it's unlikely they'll get really bad but you definitely want to do a urine test each time you get HSP to check your protein, RBCs and creatinine. Main thing to look out for is tea colored urine or blood in urine. I'm lucky that my kidneys are also ok and they suggested I either see a GI specialist or Rheumatologist. I may see both and see which I prefer. They also recommended me fish oil, saying whilst there's not hard evidence it helps it's certainly not adversary.

    I did ask if I would keep getting it... and she said whilst she can't really say, based on the current pattern, it does seem like that's a strong possibility. It really sucks and is exhausting and I feel like going to work with it really takes it out of me... but I think the main thing is to get dosage of prednisone that works (I also take suculfrate to help with my stomach lining, and the doc gave me anti-cramp meds too) and have a specialist who really understands you. Might be hard in a small town but probably worth travelling for.

    This is such a weird disease and it's different each time. Really glad to hear your stories too.

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  • Posted

    I can't stress enough to go back to December and figure out what was going on health wise with you.  Did you have strep? Did you start a new medication? Did you have mouth work done-cavity? Root canal? Wisdom teeth pulled? I researched this disease for 3 plus years and the main causes are infections and medications. Doctors don't know much about it and there is no cure. My daughter was diagnosed at 13 years old the same month that she got her wisdom teeth pulled . After fighting this nightmare for 3 years with medical doctors we went to a homeopathic doctor. He sent me to a dentist to see if she had an unknown infection in her mouth. Turned out she did! 2 big holes of infection where her wisdom teeth were removed 3 years prior. Her gums healed but instead of bone growing back under the gums it was pockets of infection. She never had a fever and her mouth didn't hurt. She had headaches at  the back of her head and inflammation in her optic nerve along with all the other Hsp symptoms. After surgically removing the infection it took her body some time to heal but is Hsp free for 3 years.  While you are searching for a cause the Dapsone drug did help with the rash. It was prescribed by a dermatologist. Steroids made it worse and immune suppressant drugs have lots of side effects and if there's an infection in your body it makes the infection worse because your immune system can't fight the infection.  Once she got off Dapsone or immune suppressive drugs the rash came back so it was masking the problem.  Dig deep for a cause, be persistent and research! Good luck 

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  • Posted

    Just curious about how your symptoms are now; I was diagnosed in January and am 20 years old, it seems that barely anybody can give solid information about the disease because it's so uncommon outside of children and the doctors are pretty much baffled by it.

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  • Posted

    Sophie I would love to tell you it will go away but the problem with HSP is that it apparently affects people differently. I'm 33 and I've had it for 7.5 years. It gets worse each flare up. I'm currently on an autosuppresant drug that I get by infusion every 6 months for 4 hours. This is my 2nd round and I've seen no change. I get very discouraged but try to always remember God is going to use my testimony to help someone. If you ever want to talk about it or vent, I'm here.

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