Henoch Scholein Purpua (8 months and ongoing)

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Hi,

Ive had hsp around 8 months now. I was really bad a few months into it with joint pain, really bad rash , etc... Since then the rash has cleared up a bit but still comes after a day of school or physical activity. I'm only 17 and this illness has changed my life completly, and I know a lot worse could be wrong. What I'm really looking for is some advice, can this be an illness that lasts forever? Has anyone had any experience like mine that they would please give me some reassurance or guidance, it's been really tough for me and I'm struggling. I get very upset with this and frustrated. I have not been able to do any of the things I used to and it's really taken its toll on me. I have been on no steroids or anything over the 8 months just perscribed medication for abdominal pain or so. I would like some tips or help please X greatly appreciated, robin

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  • Posted

    Hi robin,

    I'm a 21 year old female and was diagnosed with hsp when I was 19. I remember the first few months were horrific and I would spend all my time checking sites like this for answers as I never got enough information from the doctors. It meant I had to drop out of uni and really affected me.

    I'm pleased to say that although I do still get the rash I have gone 2 months clear at a time. It will slowly start to fade out and the rash will reoccur less. I find I mainly get it now when I'm stressed or ill.

    I tried a number of different medications, I was on steroids for over a year and found they did nothing just caused me to gain weight as well as the rash. I took cellcept and it didn't work either. I also tried dapsone which I'm allergic to. And colchicine which i think helped slightly but not sure.

    It takes time and at the start it's so hard to accept and you just want everything to go back to normal as quickly as possible. It will eventually, I've always been told it doesn't last forever and I can see now how much better I am. The only symptoms I get is the rash when it decides to flare. My kidneys were involved but they seem to be okay at the moment. Just try not to put too much pressure on yourself to get better and avoid getting too stressed.

    If there's any more questions you have, I'm happy to answer. It will get better xx

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    • Posted

      Thanks ciara I really appreciate it smile yeah at the moment just hard to know if I'll ever see the end of this.. Yeah I have had blood and protein in urine for a while now and still do.. Thanks for that reassurance it's hard when your reading pages online that are all very negative and only saw the worst cases
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  • Posted

    Hi Robin so sorry you are going through this. Which part of the UK are you in? My daughter is 8 weeks vomit free ☺. Next week we are back at GOSH with a new consultant as our's broke his leg and is still on sick leave. Unfortunately it depends on what type of HSP and what triggered it. My daughter's seems to be yeast and yeast extract products. She is now 14 and in year 9 and has barely spent two weeks of year 9 at school. We are trying a few mornings this week but she still gets headache and fatigue. She has about 15kgs of fluid in her which makes her feel like it's an up hill struggle. She was 60kgs last September and is now a steady 80kgs which is so uncomfortable. There is no light at the end of the tunnel as she has nephrotic syndrome because of the HSP. This could take years to sort out. We live day by day. Each day is a new day. Some better than others.
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    • Posted

      Thanks for your help X sorry to hear about your daughter, I know what it's like and very difficult time. I'm actually not in the UK. I have never had vomoting with my hsp and yes I have been out of school months , and now only go to school some days. Fatigue is a big part of my hsp. I got an upper infection like tonislitis which triggered this
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  • Posted

    Hi Robin

    My son is 15 in year 10 has had HSP for nearly 6 months & it's an awful illness which I had never heard of. He still has the rash on his legs & it comes and goes on his arms. Joint pain comes when he's had a busy day or done P.E. Abdominal pain & sickness was the worst thing for him but this seems to not occur as much now. He's now done 3 full weeks at school & can do PE but no contact sports. He's a really sporty boy and it has been really difficult for him not being able to do much. He plays county cricket but don't think that will happen this year. He has protein & blood in urine & he has an appt with renal specialist next week.

    I can understand you feeling frustrated it truly is a shocking illness. We have been told it does go away eventually but I think every case is different so you can't really put a time on it.

    Matty can on take paracetamol.

    I really hope you start improving very soon & you can get on with your life.

    Stay strong.

    Helen

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    • Posted

      Thank you Helen very much appreciated. Yes afuwl illness and indeed like your son I am very sporty and really difficult to accept that you can't play. Yes I also have blood and protein in urine still, get regular check ups in Hospital and take blood very often. Thanks again for the support X
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  • Posted

    There seems to be at least two different types of reasons one can have the effects of HSP.

    If internal organs are affected I'm guessing it's something unknown to me and likely the Prednisone (steroid) is not effective and maybe the Dapsone works better along with other drugs people are talking about.

    The other main reason is definitely due to allergies and in my case it is clearly due to chocolate (smallest taste will give me red dots) and Prednisone works well but I would only ever use a taper going from 6 tablets per day, 6, 6, 5, 5, 4, 4, 3, 3, 2, 2, 1,1  until I was better for a while.

    Regardless of the actual reason, it is important to be cautious and get plenty of rest, avoid alcohol and ELIMINATE anything at first within the categories of potential allergens such as Chocolate, caffeine, nuts, etc.

    I haven't heard anyone say they have found a cure, but younger people may get it and never have it again, others have developed an allergy which never goes away (which by the way, an allergy specialist can not detect because skin tests don't prove you are allergic to it).  Finally others just live with it on and off with no known way to eliminate it but some random drugs and things seem to lessen the episodes.   Also, I have heard fish oil is very good and even the smaller episodes I still seems to have (red dots) seem to be much less since taking but who really knows.   

    My main point is that with HSP, noboby can really help you except yourself.  Doctors can keep prescribing different things and maybe some will help but you will have to be the one to track everything and please try to also eliminate allergens in case that is a potential cause and slowly introduce them back in again and see the results for yourself.

    For months I could barely walk, wanted to sleep all the time and got sick often.  Since I figured out my issue was chocolate, I've never needed Prednisone again, I'm working out 3 times a week and full of energy again, but as stated if I even accidentally eat or put a chocolate ball from a cake or something in my mouth, I'll start getting the spots.

    Congratulations !  You are now a member of an elite group of people that have to be our own doctors and only research along with trial and error is going to provide further benefit beyond what your body was naturally going to fix on it's own when you have this disease.

    Bottom line, your immune system is overreacting so take care of yourself.

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    • Posted

      Oh and as for the Fish Oil and because I'm not allowed to post links see this,

      "Managing Henoch-Schonlein purpura in children with fish oil and ACE inhibitor therapy.Dixit MP1, Dixit NM, Scott K.Author information

      Abstract

      BACKGROUND:

      Henoch-Schonlein purpura (HSP) is a vasculitic syndrome with palpable purpura and renal involvement. The treatment for HSP with persistent renal disease remains controversial. The kidney biopsy in HSP shows IgA deposits and fish-oil therapy has proven to be promising in halting the progression of IgA nephropathy.

      METHODS:

      Five children with biopsy-proven HSP with repeated episodes of haematuria and proteinuria were treated with fish oil (1 g orally twice daily). In three of the five patients an angiotensin-converting enzyme inhibitor (ACEI) was added for hypertension.

      RESULTS:

      The mean duration of follow up after starting fish-oil therapy was 49.2 weeks. The protein excretion rate prior to starting fish oil was 1041 mg/day and on the last follow-up visit the rate had decreased to 104 mg/day (P <0.05). the="" average="" blood="" pressure="" (bp)="" prior="" to="" therapy="" was="" 135/82.="" on="" the="" last="" follow-up="" visit="" the="" average="" bp="" off="" acei="" had="" decreased="" to="" 100/54="" (p=""><0.05). after a year of follow up serum creatinine and glomerular filtration rates have remained stable at 51.2 micromol/l and 128 ml/min/1.73 m2, respectively.

      conclusion:

      this is the first report of abatement of hsp with fish oil and acei in children. there is a need for randomized prospective trials to confirm this observation." after="" a="" year="" of="" follow="" up="" serum="" creatinine="" and="" glomerular="" filtration="" rates="" have="" remained="" stable="" at="" 51.2="" micromol/l="" and="" 128="" ml/min/1.73="" m2,="" respectively.="" conclusion:="" this="" is="" the="" first="" report="" of="" abatement="" of="" hsp="" with="" fish="" oil="" and="" acei="" in="" children.="" there="" is="" a="" need="" for="" randomized="" prospective="" trials="" to="" confirm="" this="">

      conclusion:

      this is the first report of abatement of hsp with fish oil and acei in children. there is a need for randomized prospective trials to confirm this observation.">

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  • Posted

    Hello robin, my names Anthony... Kind of weird I literally just searched this message board to see it Anyone could use some positive results from someone who went through the same thing. About a year ago I was diagnosed with HSP and just like your might be feeling I thought my life would never be the same. It stated May 7th 2015 for me and as of today I haven't had any signs for about a month. Before that it slowly was going away. I noticed whenever I would drink alcohol or do physical activity it would occur. My stomach pains went away about 3 weeks after they started and I just had the rash and occasional groin pain. Have you noticed markers that make it come up?! Does the rash come back just as bad or is it not as bad every time? And what your diet like?! Have you had bad results on your creatinine levels?
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    • Posted

      Hi Anthony, thanks for your reply. Yes I can't play any sport since I was diagnosed last year, I try light physical exercise oddities and it does bring up more spots, school day does being up spots also and stress. My diet is not brilliant but ok. It was very very bad rash few months back and usually comes back not as bad ,but still bad... It's very bad at the moment, worse than I've seen in a while. Redness of rash will have faded down by tommrrow morning but will certainly still be there . Thanks
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