Henoch Schonlein Purpura in Adults?

Hi ZBee

  I am a 47 year old male that for 3 months been fighting hsp with no results  now they want to put me on a strong chemo drug with some nasty side effects.  I was wondering if you went thru such treatments?

Hi all, 

My daughter has HSP, it started in January this year (aged 17 - now 18) and she may be started on steroids now. It has been a big help for me to read about all your experiences, thank you all.

It is tragic to read some of you have had problems with the medics, I think we have been lucky. They diagnosed immediately and initially held it at GP practice in consultation with the Renal dept at the hospital. After 3 months she was seen at the hopital by her consultant and has been seen every 4 weeks since. She has just started Uni and our hospital will keep her and are doing 4 weekly telephone appointments. She has her bloods tested every 2 weeks aprox. She has all similar symptoms of the rash over her arms and legs, high blood and protein in urine, joint pains, tiredness and this week they found a high level of anemia.

I was told by a retired dietician to alter the diet and use the 15 power foods, to help her kidney. Initially it appeared to help and the protein dropped but it has not sustained and her consultant wants a biopsy now and likely to start steroids soon. 

I think it is insect bites that is causing the HSP for my daughter. She has always reacted badly to them and is frequently bitten, even by grass flies once. It has been a real struggle to watch the HSP affect her so badly and there appear so few adult cases or support networks.

Hi all, I am very sad after reading your posts here, at the same time thank you very much for awaring the people who are facing this problem.

Actually, today I am writing it on behalf of my wife who is getting red spots exactly you discussed here just on hands and on lower legs, thighs, and on feet.  She feels bit bit joint pain when they occurs. She is getting these spots when she got matured at the age of 13 years. Now she is 22 years old.The red spots are frequently coming without knowing exactly the reason. We shown this to so many doctors but ends with no clue. Today we visited a dermatologist who is saying that this problem is not HSP, but not conformed anything but given prescription with two creams and allergy tablets for 3 weeks. She doesn't have the problem of diarrhea or stomach pain etc except the problem I discussed above. Should I need meet any other doctor? or I really don't what I have to do. Kindly suggest anything to detect the exact problem from your experiences. 

Hello

My name is Jess and I read your story and wanted to give you some advice . I am a female and i am 20 I was diagnosed when I was 17 years old from my jr. To senior summer . I do understand that it is very difficult to feel comfortable in your own skin when people tend to stare and judge, but keep in mind people will always stare no matter what. I was never as confident and never had a 'I don't care what you think' kind of attitude until I was 18 . When Realized that no matter what people think and say they aren't in control of your life , you are in control of your life. I know it's hard to walk and stand for a long time but I also have changed my diet habbits sense I was diagnosed . Having protein also in my stool I thought why do I need more so I cut back on red meats . I am on a chicken diet . I have chicken everyday and steak one a month , but even though I have steak once a month I still only have it once that day Not twice. I also try to change my vegetables : corn one day , beans , green beans , etc. when i do have dots as I call the rash I like to go in the pool , the water is cool so it doesn't burn and the stress from my legs are taken down a couple of notches. Water , water , water . NO SODA, some times orange juice and 2% milk or organic. These are just some tricks I picked up , if you have any questions I'll be happy to answer.

Jess (:

This is exactly the same as me! I'm 18 and was diagnosed October last year just before my 17th. I've still got plus 3 blood and protein in my urine and have it checked weekly, I have had 2 ultrasounds and they want to give me a kidney biopsy. I understand completely why you're so frustrated because it just feels like you're not getting anywhere and the joint pain is unbearable even with steroids. The massive ankles? I get that too, I went on holiday last summer and they were huge, had to spend 2 days in the hotel😔 I found that slowly the rash starts to go, if you keep your legs warm and don't don't overwork you're legs hopefully they will improve. I hope things get better for you and not worse, this probably didn't help but I just wanted to let you know that I understand what you're going through and how hard it is. I'd seriously suggest asking for steroids for the joint pain though. Good luck! X

Hello Everyone,

I too have been diagnosed with HSP as an adult male in Canada three years ago. After a year of contstant nauseau, arthrtic like joint paint and what I through was an allergic rash, hospitalizations and tests my family doctor was finally able to make a diagnosis. I know see a multitude of specialists and am contastly told I seem to be a mystery to them. From what they know, HSP tends to be a condition in children and they outgrow it. They are uncertain as to where the HSP started as I have never had strep throat.

I have gone through a course of anti-inflamitory meds, steroids, chemo and immunseppresants, but still, the condition returns. I am not so worried about the red spots that appear all over my legs and abdomin (and occasionally my back, legs and even face) but rather the abdonimal pain that comes with it. I am both a farm and high school teacher. When a flare up does occur, its often fast and without warning. This has happened at work, on a few occasions. It is difficult as I have can have a class of 28 studnets and suddenly be curled over in pain and vomitting.

Right now I have been put on CellCept (Mycophenolate mofitl) which seems to help control the affects of HSP, but only an improvement.

Hopefully with the montly visits to doctors and tests eventually something will be learned and a better control method will be available.

Just my 10 cents.

I also suffered a long term hsp. I had to take steroid pills for 3-4 years. The HSP lasted about 2 years on and off and then for the next 1-2 years it rarely re-occured and when it did it was just a small patch of redness on a part of my body.

The doctor also did a treatment that i havent seen any other doctors do anywhere on the internet.

He used a Sulometrol solution in an IV and let it drip in to my vein over a 3 hour period. We did this every month, 3 days in a row. It took about a year of this treatment and it greatly helped.

This happened when i was 17 after going out the same or previous night to macdonalds and had 4 cheese burgers.

The reason why i'm even posting this is because yesterday i went to McDonalds again and indulged myself and within the hour i felt extremely sleepy and slept. The next day i had the initial patch of HSP on my feet. I am 27 now btw.

Hi All,

Mixed feelings after reading all this now, glad not to be alone but not looking great for my 6-8 week full recovery time!

I've had Severe HSP for around 2 months now, been admitted into hospital a few times with various symptoms, violently sick (with blood) skin rash, blisters, swelling, being unable to move, joint pain etc. I seem to respond, well to IV Prednisolone at high doses then seem to deteriorate after this is stopped.

Whilst in Hospital I had a Kidney Biopsy where they found I had inflamed kidneys so I see Renal for regular monitoring for blood and protein in my urine and full blood counts.

I'm currently out of Hospital for two weeks on 40mg of Prednisolone (reduced weekly by 5mg) so now on 35mg, 30mg tomorrow! Yikes. 

I am also on Mycophenolate, the hope is that as this takes effect they can reduce my Prednisolone dosage. 

I am concerned as since discharge my rash has got much worse on my feet, legs and arms, joint pain is worse and my left foot has swollen again. 

Really need advice on what footwear to wear because my rash and swelling seems to be in the shape of my socks and shoes. I am supposed to be returning back to work on Monday which I really want to do, but am worried I wont be able to manage sitting with footwear on and without my feet elevated so no idea what to do. I am seeing my Rheumatologist tomorrow so will see what they say.

Any advice from those who have suffered from HSP and are now (touch wood) clear from it on how they finally got rid of it would be greatly apreciated and tips on how to manage symptoms and get on with life.

Thanks so much

Ryan