Does HSP ever really go away???

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 !

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.

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.

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 

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.

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.