My Henoch-Schönlein Purpura experience at 18 years old- When will it end?

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I would absolutely love someone to talk to, as not many people seem to understand what I am going through. It would mean the world to me if any of you would lend an ear!

I am currently an 18 year old female in my senior year of high school. One night (about a month ago), I noticed some red, burning spots on my legs and went into the ER. They told me that it was a common reaction to antibiotics that I had taken for strep throat a week before and sent me home without any medication or further evaluation. I went to school the next day, embarrassed about my rash and hiding under layers of clothing. By the time I had arrived home that evening, my legs, feet and thighs were covered in even more spots that burned immensely. This was also accompanied by very uncomfortable abdominal pain. I called my doctor and he reassured me that it would go away within a week. My mother was furious with the ignorant doctors I had seen and continued to bring me to different clinics that week. I had appointment after appointment and ended up visiting the ER two more times after that, only to be sent home and told that it was just an ordinary rash that had to run it's course. I could not believe it! I had an especially bad experience at a hospital that I drove over an hour to get to, where everyone was very mean to me and told me that I needed to make the best of it although I couldn't even walk through the building. Like I said, it was an absolutely shocking experience.

On top of everything, since I could hardly walk without the rash flaring up and spreading, going to school was absolutely not an option. Since I am supposed to graduate this year, this is all extremely stressful to me. I couldn't see my friends, I was absent all the time, and the school didn't seem to understand why I couldn't make the best of the pain and show up to my classes.

My mom scheduled me an appointment with a rheumatologist but she couldn't see me for a few days. I stayed home and kept my legs elevated until my appointment day came, but within that time, my body became completely covered in red spots with the exception of my head. I personally felt very scared and worried because me and my mom both knew that this was more than any old rash. I'm also not sure if I have expressed enough how moving around at all or touching the spots felt excruciatingly painful. I could hardly eat without getting a terrible stomachache- I was literally worried sick. Worst of all, I felt humiliated and embarrassed, showing up to the ER and then being told to go home because there was no real emergency.

FINALLY, I saw an amazingly understanding specialist who diagnosed me with Henoch-Schönlein Purpura and everything started to make sense. She explained everything to me and proscribed me with some steroids until my next appointment in a few weeks. She told me that I cannot go to school at the time, though, and graduating with my classmates doesn't seem like an option right now. The more I am learning about HSP, the more I get upset and worried that it will never clear up. I have seen people say that they had been in this situation for the past 5 years. I've also seen some who miraculously recovered within a month.

Life with HSP has been physically and emotionally exhausting, but I do I know that there are many people who have it much worse. Those who I explain this condition to sometimes don't understand. When people see my rash they usually get squeamishness and cringe, but I guess I understand it. Being a young girl, I want to wear short sleeves and capris but my skin looks very odd. I also forgot to mention that I lost my appetite... Another thing is that's it's odd to not exercise like I used to. I hate by staying home all the time! I guess my ultimate goal of making this post was to reach out and find out if someone went through the same thing or similar and could give me advice.

How do you deal with HSP? How long have you had it and did it ever go away? Can you go to school, work, shopping, or anywhere? Is there a light at the end of the tunnel? What did the doctors tell you to do? Are you on medication or treatment of any sort?

Even if no one reads this or responds, it was still worth a shot. If you are reading this, I want to say thank you for taking the time out of your day. If you don't have HSP or anything similar, I still appreciate that you read this. It's very weird that doctors don't understand this disease very well. Once again, thank you tremendously for listening to my story!

-Mattie

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  • Posted

    Hi Mattie

    There are 3 or 4 teens on this site who you could connect with via facebook - so PM me if you'd like to chat with my daughter.

    Lucy

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  • Posted

    Mattie,

    I had this issue with the red spots once many years ago, then around 10 years later started getting it frequently. In summary, Prednisone works almost immediately when I take it, however, I think based on my new experiences if I have any chocolate I again have the issue (also happens if I get a cold). It's like an overreaction of my immune system when it kicks in.  I completely understand you can barely walk as it progresses and makes feet sore, knees, and joints sore if untreated, but in my case, starting a prednisone taper works every time, but now that I completely avoid chocolate and also don't seem to get sick very often anymore, I have not had prednisone for over a year now.  I would recommend you start a rotation of potential things you could be allergic to, just in case.   Like stop eating chocolate for a month, stop coffee the next month, etc on common items that people can be allergic to.    However, if the prednisone by itself isn't working, it could be something completely different.  I think the main point I need to make is that HSP is still only a description of people's similar bodily reactions.  There is still NO KNOWN cause for HSP so it's really up to every one of us to self diagnose to the best we are able to (until maybe one day something smarter then current doctors can figure this out for us).  Hurry up science !!!

    Best of luck to you.  It sounds as if your symptoms were worse than mine so please keep checking in with doctors and do blood and urine tests to ensure nothing goes a direction in which permanent damage can be caused.

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  • Posted

    Hi Mattie:

    i am am so sorry for what your are going through at this sensitive time of your life.  I was diagnosed this past summer and believe it or not I am 54 years old.  My doctors were puzzled.  I still work as a pharmaceutical representative so I know a little about diseases, but I was really annoyed at how my situation was handled.  I actually diagnosed myself after seeing Urgent Care, primary care, Infectious disease, and finally dermatology.  The infectious disease physician didn't agree until I had her Google pictures then she immediatkeyinformed had me see dermatology and get a biopsy. I I can tell you that it took about 4 months for mine to clear.  I also felt horrible.  I was actually at a meeting and felt like I had the flu.  The rash would come and go and my joints were swollen.  I avoid steroids because of my age and the damage for bone loss.  I also believe I may have had this as a child.  One of my first memories is being admitted to the hospital with a rash.  I must have been 3 years old.  Anyway, I have had a wonderful life . 2 beautiful girls, one is expecting a baby, and I believe that you will eventually feel fine.  Auto-immune disease are strange but not yh end  of the world.  My youngest daughter developed the shingles when she was a junior in High School.  She was a competitive swimmer and this situation was a little troubling but she got through it.  I hope the best for you and hang in there.

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  • Posted

    Hi Mattie,

    My HSP has been going on for five years now (I'm now 29). I've replied to quite a few posts so apologies if you have already read my story.

    I had similar experiences with doctors. My GP told me to 'wear trousers if I don't like the rash' and I went away feeling stupid for having gone to the doctor. It was my mum that recognised my symptoms as being vasculitis and it took about 2.5 years to get a proper diagnosis from a doctor.

    I've been through a whole range of medications. Prednisolone did nothing positive and gave me awful side effects. Azathioprine did nothing positive and made my hair fall out. I'm currently on Dapsone and Mycophenolate Mofetil. The dapsone immensely improved my life - it greatly reduced the rash (almost non-existent compared to what it was like) and removed all my joint pain and stomach pain. I've been on that for two years now. However, it doesn't help kidneys. My blood tests were normal but a recent kidney biopsy showed I've got 10% unrecoverable kidney damage. I've started the MMF with the aim of slowing down the damage. The MMF is also making my hair fall out but not as quickly as the azathioprine. Apparently the hair loss is very rare with MMF but I guess I'm just special! It is only noticable to myself at the moment but it's just another thing affecting my confidence. I just have to keep telling myself to be sensible and that having thinner hair is a small price to pay to have working kidneys.

    I kept my HSP secret from my friends for years but have found that since telling them I felt a big weight off my shoulders. However, I still keep my legs hidden so no-one can see the marks.

    Alcohol is a big no-no because it very quickly causes the rash to appear. I haven't found any other foods that affect it. Whilst most information suggests you rest and elevate your legs, I have found the complete opposite to be more beneficial. I normally walk about 5 miles a day at work. If I have a lazy weekend without much activity, I experience a big flare up of the rash on the following Monday and Tuesday. I bought a fitbit and made myself do a similar level of exercise every Saturday and Sunday - this dramatically reduced my flare-ups. However, I would never have been able to do that before being on the dapsone as the joint pain/swelling made any movement difficult.

    Anyway, my HSP has been going on a while and is showing no signs of stopping. I've been able to continue working throughout and have only had time of work for the kidney biopsy. Whilst I hope you are one of the lucky ones with a short duration, I'll be on here if you have any further questions. And please make sure you have someone checking your kidneys.

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