Henoch-Schonlein Purpura- Is there an ending?

Allergies, blood and immune system
1

Hi everyone,  I'm a 19 year old female and was diagnosed with hsp this january. 

I had tonsilitis in december recovered, then on Jan 1st the rash appeared: Legs, Feet and Elbows. 

I went to the doctors and they couldnt work out what it was gave me some cream which didnt clear the rash. 

I then developed severe abdominal pain one night, went to work the next day and came home to find the rash had got even worse. Now my legs and feet were swollen and the rash had developed to my arms and bum. 

I luckily managed to get an appointment at the docs that night, they reffered me to the hospital. I had blood, urine and all the swab tests you can imagine. Stayed in over night for the "specalists" to examine me in the morning. 

My results: Blood preasure fine, Blood fine however had blood in my urine. 

They diagnosed me with HSP gave me some more cream to help the rash and told me to rest and to keep my legs elivated. And all should be looking better by monday (it was wednesday at the time)

From here my rash started to calm down the swelling got better however this is when the abdominal pain began a few days after being discharged from hospital. IT WAS NOT LOOKING BETTER BY MONDAY.

I was then given codine whcih didn't work for the pain so was then moved on to omeprazole which did start to have an effect on the abdominal pain which now came in episodes rather than it being constant. 

All was looking well and after having 12 days rest I went back to work this monday. BAD MOVE.

I got half way through the day my legs were buring the rash appeared once again and were swollen. Later on that night the abdominal pain came back. 

Signed off work for 2 weeks now... My question is...

Its nearly been a month since this all began and from reading others stories I cant help but think, does this ever go away? 

If any of you have any advice please reply, it really does get you down. 

I don't know about you guys but FB pages and on here has given me more insight than the doctors or the hospital have. 

Charlotte. 

2

Hi Charlotte

My daughter Rebecca is 12 an was diagnosed end of April 2014. It has been an uphill struggle to get an understanding of HSP an your right you do learn a lot from others posts.

It is also best to start getting yourself under the right hospital an doctors who understand. Where do you live ? We are under Southend hospital but Rebecca's main consultant is Dr Jayne at Addensbookes in Cambridge. I would say my daughter didn't make any good improvements last year until August and she missed lots of school because she couldn't manage a whole day. Rebecca ended up having her tonsils removed in October as they think it was a bad cold with strep throat which caused her HSP. Although my 3 year old niece was diagnosed with HSP 2 weeks before Rebecca but HSP is not contagious but we are told genetically we are susceptible to the strep virus. Neither my niece or my daughter have had any treatment except ongoing monitoring of their urine for protein. Sorry for the long post hope your feeling ok today. Unfortunately It's a long slog but will get better in the end.

Kelly

3

Hello Kelly,

I'm under the Queens medical centre in Nottingham. I've always had trouble with my tonsils and reckon having them removed could possibly help? I'm also having my urine and blood pressure checked weekly too. It's nice to know I'm not alone.

Thank you for your support :-)

Charlotte

4

Hi Charlotte

Just see how you get on with your doctors and if your not happy then change as there isn't many out there that understand it. Dr Jayne is really good and highly regarded. Try to join the vasculitus linked website which is healthunlocked. There are also support groups for vasculitus but even then HSP is not that common I have found. Facebook seems the main place to join an always get an answer. Hope for your recovery. Any questions just ask.

Kelly

5

Thank you Kelly :-)

6

Hi Charlotte,

I am a 40 year old female, first diagnosed with HSP back in February 2014. It started with tiny red spots on my lower legs and progressed to the lovely purpura rash within two days, followed by extreme swelling of my ankles and some in my knees. I was hardly able to walk at the height of the outbreak. Luckily the rash never spread above my knees, but then my dermatologist prescribed a heavy dose of steroids as soon as she saw me. I have since been on three treatments of prednisone and each time the spots and swelling came back. 

This last round of prednisone however went on for over seven months, my rheumatologist was trying to trick my immune system into working correctly. I finally stopped the dosage on January 1st. I have seen some spots, had minor joint pain and swelling, however so far no major ourbreak (knock on wood). I am cautiously optimistic, very cautiously. 

What is most terrifying is how little anyone knows about this. After all the research I've done I could almost be certified as a professional myself on the disease. 

I believe my HSP broke out initially due to strep as well. Although I had my tonsils removed in third grade I am just one of those people who get strep no matter what, and often with no symtoms.  I completely believe there's a definitive link between strep and HSP. 

After living with this for well over a year now all I can suggest is to take it day by day. I've gone through my punching walls and cursing fates wondering what the hell I did to warrant such an odd, painful disease, but that type of negativity helps nothing. 

Luckily my symptoms can be managed by prednisone, although as anyone who's taken this drug knows it has its own set of nightmares. 

All I can do now is wait and see. I appreciate days I am symptom-free all the more now. HSP kind of put a lot in persepctive for me.

What I can offer for a fact is that every single case is different. You never know, eventually yours may go into remission, I see that happen just as often as not.

I am curious how may others on this board were diagnosed as an adult. I am ever researching comparisons and treament options.  Anyone taken Colchicine? That is my docs next recommendation, but I am wary of the side effects. 

Charlotte, has your doctor suggested anything like prednisone?

 

7

Hi Vickey,

Thank you for replying.

They have never mentioned prednisone, what is it exactly? I've read more than several people's cases who have been given prednisone and sounds like its a common medication used for hsp.

They are keeping my urine and blood pressure up to date weekly and I still seem to have blood in my urine.

Would I be right in saying if I was to get tonsillitis again or strep it is likely to trigger the hsp in the future as well? I've suffered with bad episodes of throat infections my whole life, would suggesting to get them removed be of any advantage?

I've done so much research and I feel like I too could diagnose this all across the country! I've read so many cases where doctors and hospitals haven't had a clue for ages and don't diagnose it as hsp for weeks!

Thank you for your support,

Charlotte

8

Prednisone is basically oral steroids. They have quirky side effects, such as weight gain in strange places and changes in mood. This makes sense though since they are, after all, steroids. However this drug takes care of the rash and swelling, at least for me, and it's not like I have to take it forever. And in smaller doses the side effects are manageable.

I definitely think you should talk to your doctor about getting your tonsils removed. As far as having strep causing another outbreak...it's possible. However I think strep mostly works to trigger HSP to begin with. My doc told me this disease usually lies dormant in people's body their entire life, that it takes a trigger to "wake it up". I think strep is one of those triggers.

I wish I could refer you to my rheumatologist, but I live all the way in Arizona. She's very pro-active about finding solutions for me. She's often on discussion boards with other doctors across the country comparing treatment options. Perhaps you could suggest your doctor do the same. I can guarantee every doctor would benefit from collaborarting with each other since there is certainly no expert in the disease as of yet.

I wish they'd put the money into researching this like they do something like cancer. Sadly there's just not enough of us to warrant the cost, as callous as that sounds. 

  

9

On my next docs appointment I shall bring up prednisone, thank you!

Your rheumatologist sounds amazing! I wish more doctors and hospitals were more pro active too, I'm living in the UK so it sounds to me like hsp is pretty much clueless to the rest of the worlds doctors etc more research and involvement needs to happen!

I've only been at work for 1 week this year and have been signed off with hsp since, it's something Im frightened of becoming long term and work becoming annoyed. Of course I can't help this disease but I hope it won't get in the way of too much.

Charlotte

10

Hi Charlotte, 

HSP can be scary, I know. I was diagnosed when I was 6 and was hospitalised for over two months, with six months off school. When you're ill as a child you tend to remember it in better detail than the times when you were fine. 

My case was extremely severe and my family had prepared for the worst. I had serious problems with my kidneys and despite being transfered to a London hospital, it took a long time for me to begin recovery. 

I was finally cleared (my kidneys fully functioning) when I was 12, but most cases with such severeity clear up within 2 years. This said, 1 year after I got out of hospital, my life was just the same as before I'd gone in- the residual problems unnoticable.

I'm not telling this to scare you, I'm saying this to hopefully reassure you that a full recovery is possible. 10 years later and I'm fine now, and will hopefully remain free of the illness for the rest of my life. 

I really hope this helped; stay strong!

Rebecca

11

Hi everyone, 

I'm new to this board. I live in the U.S.

I was just diagnosed with HSP about a month ago, but I've had this problem for at least 12 years.

This flare up has been the worst so far with the off and on rash covering my legs, a bit on my arms and my stomach. I've had swollen ankles, some mild joint pain, a few rash sores, etc.

I've been anemic forever and may have some gastro issues with it (but I think my gastro issues may be related to something else.)

But it hasn't been 12 years straight. I've gone months and even years (six years?) without rash/joint pain symptoms before. I don't know what will happen now, but that's been my experience. I hope this flare ends soon. 

I've never taken any medications for this problem. At least, not yet.

Hope you are all hanging in there. 

-Karen

12

Hi Charlotte,

I had a similar story, and unfortunately it is unknown how long it takes for your rash to go away and for you to feel better. It took me about 3 months for it to get much better, and since then it :comes and goes" but very mild compared to the first outburst. Make sure you are on top of your urine results... kidney invovement with protenuria... I suggest you see a nephrologist and a rheumatologist. Maybe Prednisone will help. I had prednisone (helped), Ru-ituximab (did not help) and Cellcept (helped somewhat). I wish you feel better soon. It must be hard for you to explain to people and at work what you have, and people look up HSP online and think it goes away in a month (ha!). Good luck and do what's best for you!

13

My daughter is also 19 and was diagnosed with HSP in December. She has had a terrible time with it and been admitted into hospital 4 times for a week each time. Her problem is absorbing oral steroids so she needs them intravenously. Plus she also had a intra-muscular injection of slow releasing steroids. She takes Omeprazole which helps with the tummy pain. The rash fades a bit for a day or so then flares up again. It is all over except for her face & chest. The endoscopy and colonoscopy showed her bowel and intestine inflammed with HSP & ulcers. She also has blood in her urine so they monitoring kidney function. At one point she was bleeding from the bowel and almost needed a transfusion. She has a really bad case of it and it seems never ending. There is very little info on this condition. Hers was triggered by a hepatitis B vaccination! She needed the course so she could do her first nursing placement! She ended up in the hospital bed. Her joints are badly affected too and she struggles to walk at times. She is under a Rheumo, renal & Gastro team at St James hospital in Leeds (where she is at uni) and they have been great. These forums give me hope that her condition will improve and hopefully go away. It is a scary disease and so unpredictable. I hope you get well soon. Let me know if you have any specific questions.

14

Hi, have you considered that maybe it has something to do with carpets and lawn pesticides. My son had this and I am thinking that it is related. We live in the US and people gone nuts on the pesticides for lawn care. Since you are in the UK, I wanted to know if you have been exposed to carpets and pesticides? Because if not, I may want to rule out my theory. My son did not have strep throat, but his cousin who visited got the hand, foot and mouth disease around that time. Something must have been in the new house we moved in at that time. I am thinking some chemicals in the carpet or maybe pesticides. Can you rule these out on your end?

 

15

Hi Charlotte,

I was diagnosed with HSP on the 29th of November and it has changed my life completely! I've had to suspend my University course due to this virus as the swelling and everything went bad I've been on crutches for a few weeks! It's been vile. And the date today, 25th of February and I'm still getting symtoms which I wish would go away! So if you want my advice, just take everyday as it comes.. If you're having a good day! Do something because you'll never know.. Tomorrow you could be in pain on the sofa - but take it as an advantage.. Lazy day? Netflix? DVDs? What else a girl wants! Hope you feel better soon.. Cause I just want this virus to go away! Your not the only one with this.. I've had it for a few months now! If you want any information or talk, contact me..

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages