Henoch Schonlein Purpura in Adults?
Posted , 75 users are following.
Hi,
I'm currently a 19 year old female student in my 2nd year of my degree, during March 2012, I was diagnosed with Henoch Schonlein Purpura (HSP) after being sent to hospital with meningitis like symptoms. You can imagine the relief, when I found it it was not in fact meningitis. The symptoms of HSP (Rash, Swelling and Abdominal Pain) however, have interfered in my life a great deal, leaving me having to take a lot of time off work and my studies, which actually resulted in me being very ill for my end of year exams. Fortunately, I still managed to pass my first year at university.
These symptoms are causing a great stress in my life, and continuous hospital appoints are a constant pain.
As a 19 year old female, my appearance is very important to me, and I am struggling to keep a 'positive' face when I have to constantly cover up from my neck down, otherwise I am bombarded with questions and looks as though I am a freak of nature, on more than several occasions I have been very upset with this illness.
During my visits to the hospital, despite my kidneys being priority there (thankfully, they are still functioning fairly normal with little blood in my urine) the rash itself is one of my biggest problems.
I have been trying to find people in recent times with the same condition, but am struggling to do so, many discussion forums tend to be around the time of 2008, many of adults complaining that despite being told the symptoms would leave after 4 weeks, have been left with this illness permanently. This has brought me down even more, to discover that no one has been able to share their story of recovering from this frustrating illness.
I was hoping that by me bringing this up, hopefully someone with the same problem as me would be able to shed some light on to this, as doctors seem to be just as useless and clueless as me. I am in no position to say that this is the worst thing to ever happen, as I know others have it a lot worse, but I simply could not imagine leading a 'normal' life at my current rate, as for me, walking is an incredible difficultly for me, due to my massive ankles, knees and feet.
If anyone can help me, at all I would be extremely grateful.
I am on no current treatment, besides painkillers to reduce abdominal pains, and bed rest for swelling.
Thanks in advance x
5 likes, 114 replies
rosieposie94 ZBee
Posted
Hi Zoe,
I originally was diagnosed at 8 years old. 14 years ago. I had and aggressive treatment, antibiotics, steroids, IV fluids as my temperature was high and I was vomiting so much I was dehydrated. My arthritis was so severe I was in a wheelchair. My children's size 12 feet swelled to the size of my mom's size 7.5. But after the initial treatment (lasting 4 months) I have not had outward symptoms.
Recently, a doctor tied my severe GI issues to my HSP which I haven't thought I've had for the last 14 years. So basically it's been silent and causing this distress inwardly, but that is favorable to the joint pain and rash.
On your issue, I have tried many different contraceptive methods. None have brought my HSP to the "surface". I am currently on Nuvaring and love it. But since I haven't been thinking about my GI and HSP being related, I haven't noticed if any of the past made those symptoms worse.
I feel like docs don't describe it to us very well, because they are used to seeing it manifest mostly in children (as mine did during its worst phase). Children are much more resilient at fighting off infection than even those of us in our 20s. So I'd say, keep plucking, and FIGHT for yourself. You have to be an advocate for your health, because no one else will. Unless you find a spectacular MD, NP, or PA. They are few and far between but they do exist. The NP I see at my university's medical clinic really helped to make sure I had answers for the (GI) pain I was suffering, and the GI MD I saw tied everything together. Which was the first I'd ever heard of any organ besides the kidneys really being tied in.
I hope you find the comfort you deserve, and can get resolve from the symptoms. It's been 14 years but I still remember clearly the excruciating pain and embarrassment that can come from HSP. Fight for yourself, and find a medical professional who will help you on your fight.
Best of luck.
markla80 ZBee
Posted
Although I'm male I thought I would share my experience. I've always seen the rash when I was 18 and freaked me out but it didn't itch or cause any pain so I ignored it. I would then see it again and asked my doctor about it and he thought it might be an allergic reaction and said I'd it didn't itch or bother me it's nothing so I ignored it all my life. I'm 37 now and last year I broke my toe and it must of triggered something because both of my legs were filled with the rash it looked as both of my legs were filled with blood and it went all the way up to my arms which was new and I had swollen ankles and joint pain and I just thought it was from a race I did when I broke my toe so I ignored it. Until I couldn't walk at times I couldn't move my legs for ten minutes so I finally went to the er and just the expression on the doctors face had me worried. I was more concerned if I broke my toe and they were more concerned with my body. Trying to make this short so after the er they told me to get it checked out went to a dermatologist and they did a biopsy and confirmed vasculitis hsp then referred me to a rheumatologist and put me on steroids and an immunosuppressive drug that made me vomit everyday until I couldn't take it. Long story short went on others and wasn't successful and I couldn't take steroids because it triggered my bipolar episodes and I was a monster. Until this day I haven't found the right treatment and have to start from square one each time. I recently had a melt down with severe depression and I admitted myself to a mental health treatment center and they said with my medical issues and experience I had medical ptsd. I decided to give up and stop treatment because I learned through doctors and research there is no cure and kidney failure is likely to happen since I'm male and since I went without treatment for more than 15 years so now I'm stuck with this disease at a stage where it's hard to manage. Not to be negative but if you are in early stages get treatment. I feel it's too late for me and I'm just preparing for the worst. I already had my gallbladder attacked and had to get it removed and the chemo pills caused a benign tumor in my liver and a cyst in my thyroid on top of that I now have peripheral neuropathy. The point I'm getting to is don't wait too long for treatment. All of these things I mentioned happened recently within the year. I've lost ten pounds in two weeks recently which is not normal. I can't eat more than a bite and my fatigue is severe that my adderall doesn't do its job which should give be lots of energy but it gives be enough to function without it I would be in bed. I get frustrated that doctors don't know what to do and when I ask if this disease is terminal they deflect. I read on a sight that it is but is not considered terminal as there is no time frame as it differs based on different variables. I know this is not what you're looking for but I'm the type I would like to know what the worst case scenario is so I don't get surprises. I still get abdominal pain from time to time and my neuropathy is becoming annoying and I've been out of work for eight months stressing I'm going to lose my job so I'm actually going to return and work as long as I can and take a leave again in the new year as my job protection and benefits restart. Hopefully this helps even though it's not good news