Henoch Schonlein Purpura in Adults?

Hi, ZBee.

I'm very sorry to hear about your case of HSP. I was diagnosed March 29 this year. I'm 16 years old and they had told me I had to wait it out. I did normal checkups with my blood and urine. I had no signs of kidney problems not intestine problems. It is now May 17th and my disease has completely gone. I do hope you're better now. I know I'm very happy with the way it turned out and hope it never comes back. It brings a whole lot of self esteem issues with it. I hadn't worn shorts that entire time. Everyone would question why I looked so different and had been separated from other people who thought it was contagious. I had also been asked questions if I was dying and it was totally horrific for me. I never experienced any symptoms with this disease other than the rash. I do hope you feel better.

Colton.

Hi Zbee

My brother in newzeland has just been affected with this condition but the issue is that it is affecting his eyes too as he was unable to open his eyes this morning.. he already has rashes in lower part of his body but they are now coming towards is upper body with severe pain in his throat.. i am extremely worried and want to know if this is normal?

Kind Regards

Sunaina

Hi,

I am a 21 year old female and I got diagnosed with HSP in April of this year. A few weeks before my rash popped up I had a really bad sore throat and went to the doctor about it, where I got tested for strep throat. The test came back negative, (which I much later learned was a false negative) and I was treated for seasonal allergies. Fast forward 2-3 weeks and I wake up with tiny red spots on my foot. The next day they were on my other foot and the day after that it was going up my legs. I got a correct diagnosis fairly quickly when I went back to the doctor about the rash, but I ended up making 3 hospital visits due to the pain and discomfort from the rash. I am very lucky in a lot of ways; I never had much abdominal pain and although my kidneys were damaged, they are getting better on their own.

My treatment was a long course of prednisone that lasted 6 weeks. My symptoms are gone but I am still dealing with the aftermath of my rash. My purpura was so severe it left several ulcers on my legs and feet. I've had to go to a wound care clinic for treatment and I now have several scars that will take several months to a year to fade. I'm in almost constant fear that the rash is going to flare up again but I'm trying to remain positive. It's been nice to read other people's stories since no one I know has heard of the disease and none of my peers can fully grasp what I've had to go through. I wish everyone who's still battling this terrible condition the best of luck.

Hello, I am grateful to find this group. My first inflammatory auto immune disease occurred when I was 19.I had huge painful welts on my legs, an uncontrollably cough and I could not walk because of the pain in my legs. That was sarcoidosis. Later, I got Graves disease and early cataracts. I believe that I have had HSP for a few years but now I also have the rash and GI involvement. I know how awful it is to have scarred legs. I became an expert on sef tanners. Over the years, every time I followed The Blood Type Diet, I seemed free of many inflammatory symptoms. Unfortunately, I have a hard time with food discipline. Well, I am so frightened by this disease that I am committed to staying on an anti inflammatory diet. I am seeing my naturopath on the 26th for her take on how to manage. And I will do acupuncture. I will keep you posted on the results. Since you all are so young, you may be able to make hard lifestyle changes. I am also going back to water aerobics after I get the stitches out from the biopsy. That has always been the only exercise that I can do without everything swelling up. I do know that stress was a huge factor because although I did have an infection, I also had to put my dog to sleep. I was so upset that I couldn't talk from the crying

Hi

unfortunately, I can't tell you that this will completely go away. From my experience, I'd say you can manage it so you can go long periods of time where it does not flare up.

I have only recently been diagnosed properly with HSP at the age of 58. However, I have had the symptoms since my twenties. I found that cutting as much processed food out of my diet - tinned/packets - as I can helps. This keeps additives out of your diet. I actually became a vegetarian over time.

I also found less dairy and caffeine and alcohol helps. I love cheese, yoghurt, ice cream, and like to have a drink at times, but I now limit these things a lot more. I also love a good coffee, but have limited this too. I use soya milk more now. 

I have gone for years without having a flare up once I changed my diet, and I would say alcohol really affects me. My guess is that as a 19 year old student you are encouraged by your peers to go out and party! If you do drink, I'd try to do it slowly so you cut down the alcohol. I also take multi vitamins daily to try and stay healthy. 

Managing my diet has not completely prevented me from having a flare up, but I think it has helped me go for years at a time without having one, and I don't take steriods or anything for the HSP - unless I have a very bad flare up and am given antibiotics. I really notice that minimising alcohol, coffee and dairy helps.I've recently had a flare up when I have either had infection due to a cold, or I have drunk a lot of alcohol or caffeine - or both!!

Good luck with things!

Hi everyone! If anyone has any new information from doctors and would like to share that would be greatly appreciated! I'm an 18 year old girl from California, and I recently got HSP. The first week of January this year I had come home from a friend's birthday party late at night only to discover bright red spots on my arms, legs, and a little on my bottom even. They weren't itchy or painful, so that's why I was really surprised to find them scattered on my skin as I was changing into my pjs. Anyway, being a very stubborn person, I decided I'd wait a week to see if it could be an allergic reaction that'd go away on its own... A little over a week later, still covered in spots (but not experiencing any associated symptoms), I finally went to Urgent Care where 3 different doctors stared at me funnily and called me a "mystery" case. It was probably because I had no other symptoms such as the joint or abdominal pain that many of you have described. But just based on appearance they told me that they thought it was most likely HSP. They didn't tell me ANYTHING about it other than the fact that it should go away on its own in 4-6 weeks. 6 weeks later (mid Feb), I follow up with my doc (who seems more clueless than ever) & she has me do blood tests and urinalysis as well as refers me to a dermatologist. They find moderate amounts of blood in my urine and the dermatologist has yet to get back to me about a skin biopsy I had over a week ago today. They had me do a repeat of my tests and found even more blood in my urine so now I'm being referred to a kidney specialist. I'm just getting worried because none of these doctors I've spoken with have told me much info in the first place (I've had to do my own research) and neither have any of them been very comforting as I wish the would. I expect doctors to be truthful yet still instill hope in patients, but I've been feeling quite the opposite of hopeful. I keep getting so frustrated since it's quite warm in Southern California and I feel like I have to wear jeans and long sleeves. I just really want some information because I know internet cases are not going to apply to everyone. I do notice that if I walk a lot (for ex after walking around all day at a theme park) a lot more spots appear; they also fade the more laid back of a week I have. Also, any little scratches on my skin seem to leave behind what I call "blood stains" which are basically just like the spots but in line form. I don't know if this was associated with the HSP, but I also experienced sharp chest pain that would come in quick bursts right around the sternum for a few days early in my weeks with HSP. I'm also not sure if this was a result of the HSP but one time a couple weeks ago when I took a 10 hour road trip to Northern California, I got got terrible stomach pain/ diarrhea (but that could have been McDonald's lol who knows) and flu like symptoms for only two days. My ankles are swollen and sometimes I do feel like some clothing material irritates the spots more, and "pressure" like from the button on pants often leaves behind some spots in the pattern of the dents left on the skin. This is so long but hopefully people can relate. I'm so sorry some of you suffered much more and it was very painful for you. I hope someday soon someone finds a solution for all of us <3 Please share any info you get from professionals here! Perhaps some docs from other regions are more advanced on HSP!

Best wishes everyone

Hi my name is Jean I am 35yr old female with HSP vasculitis I was diagnosed in 2013 with it. I thought I was having an allergic rash but the purpera was so painful all on my legs. At the time I was working as a medical assistant for a multi practice group. I went into work and was in so much pain to walk and became really fatigue so the doctor did blood work and my WBC was through the roof and this was before they even got to examine my legs.

As the morning went on I got progressively worse I had 104 fever and was sent to dermatologist who biopsies one of the welts on my legs and it came back positive for HSP. Over the next few months I was in and out of seeing specialist, hospitals because my fever would not come down to anything below 102 daily for two months and the dots multiplied. There were trials of all diff kinds of meds I tried but my levels didn't change as well as the dots wouldn't go away. Finally my rheumatologist who is a God send tweeked my meds to where I have been stable

I had a history of anaphylactic reactions to coconut and was on prednisone previous to all this happened I had 9 reactions in 6 months which was said to be the cause of this happening. Once the HSP was controlled with Cell Cept medication I had formed fibromyalgia I wasn't able to walk the pain was insane and the fatigue so the doctor added Wellbutrin which attacks the nerve endings as well as gabapentin for pain and flexeril for muscle relaxer. As long as I take my meds I'm usually good but the more stress on my body the break outs come out and hurt. Currently I relapsed because I had a bad accident at work a 300lb unhinged door fell on my spine and I had to learn how to walk and regain my strength. This added stressor has not been good

I have noticed that when I am good and take my meds no stress I am able to function my normal routine working as a surgical tech 8-10 hr days on feet go to the gym and travel keeping my stress level down helps. I've also added tumeric into diet helps with inflamation lot of fresh fruit.

It's hard to explain to people who don't have this because we are young and normally this form of vasculitis happens in children and most won't get what it feels like and how there are good and bad days so it's hard to plan ahead to do things and it's harder to have to cancel them!

Hi I am Maya 29 year old female .I recently saw your post I hope you are well now.23rd of March 2017 I was diagnosied with HSP I was admited in hospital for 2 weeks.It all started with slight painn in my right knee after 4 hours of pain I was unable to make a single move and it followed with swelling and rashes bellow my waist I went to walking centre and they refred me to emergency.The pain was extreme so doctor gave me morphins later these rashes went in my tummy and than elbow ang my hands they were so puffy ,had severe joint pain.Every morning I had different symtoms one morning I woke up with swollon forhead and bumps all over my head followed by severe pain in my ear.Next day I had bloody stool with tummy ache.These pain were never ending.I was later precribed with Predisonil Steroids which helped to reduce swelling but it had so much of side effect.now it been a month I sm back home but I still got the symptom rashes still there they come and go but they are not agreesive as before.I have to follow up with my GP to make sure my kidney are ok but recently through urine test Doctor found out that large amount of protein is leaking through urine so they made appointment with kidney specialist I hope everything will be ok.All I can do us wait and watch I dint know when will I have my life back this is horrible I am traumatised but still havent loose hope.

I am in Steroids till next appointment with dermatologist thats on 9th of May.

Hello all,

My doctor recently told me he is testing me for HSP. Unfortunately, I have to wait for my results until June as he is away on holidays.

I've had purpura for about 11 years, but I did not recognize it as such. Embarrassingly, the purpura is located on the inside of the vaginal labia. I first noticed it after the birth of my first child, and as they ran along the veins, I assumed they were varicose veins. My doctor now tells me they are not. They have never caused me trouble.

Now, however, I've been struck with arthritis. For almost a year, I have had swelling and pain in my hands, feet, elbows, knees, hips and shoulders. I have had a positive ANA (1:8 speckled pattern) so they had looked into Rheumatoid Arthritis, but it doesn't appear to be that. At my recent PAP, my doctor said the purpura and arthritis may be linked.

I do not have any abdominal pain, but moderate fatigue, diarrhea for months on end with little break, and fevers that stay for a month and then give a month's break. I often feel flu like symptoms too.

Has anyone else had genital purpura? Purpura with no pain? I occasionally get a small number of light red spots (petachaie?) on my feet and ankles, upper arms and elbows. My main problems are the arthritis, fatigue and diarrhea. Does this sound familiar to anyone else?

Hi,  My daughter is 20 and was diagnosed this year with HSP.  

She doesn't get the terrible rash as much as bruising.  

I'm also looking for info on HSP and sun poisoning.  she has hardly ever burned in the sun but now is burning after just a few minutes in the sun (with sunscreen).

 

Hello, I am a 29 year old female and was diagnosed with HSP about 9 weeks ago. I had no other symptoms besides the rash. My labwork is all clear, no abdominal issues and kidneys are normal. The rash was biosied and it came back HSP. I took one round of steroids after the rash kept flaring up and I just wanted it gone. The redness is all gone and now he rash is in the brown spots/bruise like scarring phase. I was wondering did yours ever completely go away? Do you still get flare ups? Alcohol does seem to affect mine and causes small red flare ups, but usually goes away in a couple days. Nothing like the initial blistery type lesions.

Thanks,

Julianna