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Henoch-Schonlein purpura (HSP)

nativef0x
2 Recommendations

My 16 yr. old son was diagnosed a few months ago with HSP Henoch- Schonlein purpura. His 1st symptom was a reddish purple dotted rash from his thighs down to his ankles. The rash went away after about 1 1/2 months, but he has consistently had a large amount of blood in his urine.
Now he is starting with abdominal pain and his urine is very dark. He also has had joint pain for several months before the rash ever developed.
I have been told that this is usually brought on by a virus, but my son had no viruses in the past year that we knew of.
From what I have read about this disease, it usually effects children between the ages of 2 and 11. I also read it effects males more than females.
If anyone knows anything about this disease or if your child has these symtoms, I would like to hear from you.

Explore topics in this discussion:

Motrin Nephritis IgA nephropathy Meningitis Chronic fatigue syndrome Cyclophosphamide Proteinuria Vicodin Morphine Prednisone CellCept Arthritis Leukemia Aspirin Ibuprofen Fever Rashes Cytoxan Pain Hematuria Mental health

35 replies

AlaskaMom

Hi. I, too have a 16 year old son. He has in the past had a reddish purple rash and for over a year now suffers from chronic stomach pain and some joint pain in his thighs. He has been seen by two different Ped Gastro Docs and they think he has a severe case of IBS. None of the meds prescribed work for him though and he does not really have bowl problems but its the only thing they can come up with. Is your son able to attend school? My son misses classes from his pain.

My question is how was your son diagnosed for Henoch-Schonlein purpura?

Any info will be much appreciated.

Vicki- Parent

lavalava

Our daughter who is now 28, married and has 2 children had this when she was in high school. It took several months for all of her symptoms to resolve. She was very ill. The thing we remember being told is to watch the kidneys. She did not have any kidney issues. The Dr. that we saw the most was a Rheumatologist. Has your son seen a kidney specialist? How long has your son had this? We hope your son will feel better very soon!
DeAnn

nativef0x

Hi Vicki,

I am so very sorry it has taken me so long to get back to you. The doctors did blood work to rule out leukemia which was my 1st concern when I noticed his rash. They also did an urinalysis. My son has been consistently have high amounts of blood and protein in his urine. At times, my son misses school due to abdominal pain,extreme tiredness and joint pain.

He was just recently seen by a pediatric nephrologist(kidney specialist). I would advise you to ask your son's doctor to test him for HSP. Good luck Vicki to you and your son.

nativef0x

Hi De Ann,

My son has kidney involvement and has been to a nephrologist(kidney specialist). He has had this since last November. The nephrologist ordered a 24 hr. urine collection which will be starting tomorrow mornig. Then he has several blood tests they are going to do when we take the jug back to the lab.


He sees the nephrologist next in October. At that time, she(the dr.) will schedule my son for a kidney biopsy.


I'm glad your daughter is fine now. Thanks for the well wishes for my son.

camae

My son now 22 yrs old was diagnosed with HSP last October The purpura was all over his body but almost solid coverage on his hips buttocks and legs. He's had Kidney onvolvement all along of varying degrees and it attacked his intestines requiring a two week hospital stay.

It's now been over a year and he hasn't had a day free of symptoms since the beginning. Since he can't work he has no insurance and he lives with me so I provide all his care. I get so frightened some days when he's so sick and get terribly depressed about the lack of information about adults with HSP a lot of what I do find is frightening to me as well because it isn't positive. Unlike what I see for young children.

He is my only child his father and I have divorced and he isn't helping out at all, in fact he has withdrawn to another state. I pay for all my sons care and meds out of my own pocket and haven't been able to locate a single Rheumatologist who will see him without Insurance.

This last year has been the most difficult year of my life and I know my son would agree.

sgohlke

My daughter(14 at time going to be 16) has also been diagnosd with hsp in march of 06. First admitted with severe abdominal pain. (possibly brought on by food poisening)And a rash that broke out about 1 week into the pain. 11 different doctors tried to figure out what was wrong. They scoped her out and did find 14 ulcers at the time not knowing where these were caused from. It wasn't until the rash broke that it was diaganosed. They immediately started her on Steriods for 6 months along with previcid due to ulcers and stomach issues steriods can cause. and Cellcept for 1 1/2 years due to high protein levels and blood in urine. She now has under went her second kidney biopsy to come back with 8 crescents and 1 scarred in the filtering system. We are now starting iv prednisone and oral to stop this so she doen't go into kidney failure. She has not had any pain since the 3 weeks of being hospitalized. The steriods they gave her helped within 8 hrs. she went from non functioning to walking around the hospital within that first 8 hours of treatment. Prior to the steriods they gave her morphine for pain management till they could figure it out. you may want to try to get him into a study of some sort. Try mayo clinic or uw madison hospital. Hope all goes well and good luck. I feel your pain.

bluejay

Henoch-Schonlein purpura - (HSP or anaphylactoid purpura) - HSP occurs most often in the spring and frequently follows an infection of the throat or breathing passages. HSP seems to represent an unusual reaction of the body's immune system that is in response to this infection (either bacteria or virus). Aside from infection, drugs can also trigger the condition. HSP occurs most commonly in children, but persons of all age groups can be affected. As you already know, classically, HSP causes skin rash, pain in the abdomen, and joint inflammation (arthritis). Not all features need be present for the diagnosis. The rash of skin lesions appears in gravity-dependent areas, such as the legs. The joints most frequently affected with pain and swelling are the ankles and the knees. Patients with HSP can develop fever. Inflammation of the blood vessels in the kidneys can cause blood and/or protein in the urine. Serious kidney complications are infrequent, but can occur. Sometimes a biopsy of skin and/or kidney is used in assisting the diagnosis, which is typically made based on the clinical findings. While HSP is generally a mild illness that resolves spontaneously, it can cause serious problems in the kidneys and bowels. The rash can be very prominent, especially on the lower extremities. The treatment of HSP is directed toward the most significant area of involvement. Joint pain can be relieved by antiinflammatory medications, such as aspirin or ibuprofen (Motrin). Some patients can require cortisone medications, such as prednisone, especially those with significant abdominal pain or kidney disease. With more severe kidney disease, cyclophosphamide (Cytoxan) has been used to suppress the immune system. Infection, if present, can require antibiotics. The prognosis for patients with HSP is generally excellent. Nearly all patients have no long-term problems. The kidney is the most serious organ involved when it is affected. Rarely, patients can have serious long-term kidney damage or an abnormal bowel folding called intussusception. A few patients have recurrences of symptoms for a couple of years after the onset of the illness.Recent data shows that HSP in adults is generally more severe than in children. Adults have more severe kidney involvement and can require more aggressive treatment. The ultimate outcome, however, is usually very good for both adults and children.
Reference:
Clinical Primer of Rheumatology, Lippincott Williams & Wilkens, edited by William Koopman, et. al., 2003.
Kelley's Textbook of Rheumatology, W B Saunders Co, edited by Shaun Ruddy, et.al., 2000.
I add details of the Henoch Schonlein Purpura Support Group in UK which I hope will be of use to you. I would expect that if you are living outside the UK, if you contact the group, that they will be able to assist you in contacting a group in your country.
c/o Contact a Family
209-211 City Road
London
EC1V 1JN

Tel: 01733 204368
Best time to telephone:10am - 2pm
Web: www.cafamily.org.uk/Direct/h36.html

This is a small contact group formed in 2003. It offers a listening ear and, where possible, linking for affected adults and families of affected children.

Hope this helps
bluejay

sgohlke

HSP also can effect the bowels. My daughter has had it for 2 years now but never had the bowel system( don't always get all) She just still has it in her kidneys only. Read comments below to see the rest of my story. Prednisone really helps with all pain. But side effects are not good. Hopefully all goes well.

kel

My son was diagnosed with HSP 5 years ago at the age of 7. He had an ear infection- treated it and one week after starting antiobiotics he came down with the spots. Leading up to the spots
he complained that his belly hurt sometimes and his feet too. But nothing so bad that we had to go to the doctors- that is until the spots. My son was spilling proteins (proteinuria) and blood in his urine (hematuria). Weekly trips to the dr's and lab - 24 hour collections - nephrologists-
Read what you can - but keep it simple- don't scare yourself , I learned that. I guess that the best way I can repeat what I learned from our nephrologist is that the HSP damaged nephrons (look at diagrams of kidneys it helps understand) in the kidneys, the immune system does not recognize those damaged nephrons and attacks them creating more scarring -more damage. This in turn causes the kidneys to work harder , From what I can remember my son had a period of time where his were working 800 times harder then they should have been. We were so terrified, it was pointed out to me that organs are like little machines and if you work them too hard they stop working. At the time I was a single mother of three, my son being the oldest and I didn't have the internet and I didn't know anyone who had ever experienced anything like this before. My son was put on an Ace Inhibitor to slow the function of the kidneys- it worked - trace
hematuria-no proteins- off meds for 2 years, normal kid, plays sports, honor role, growing like a weed ! 2 weeks ago got sick (first time since onset of HSP) Spilling "Big blood " in urine . We could back to square one- will know more today.

camae

I'm so sorry to hear that your son has had a relapse. My own son first became sick at 21 yrs old, he'll be 23 in April and that will make him sick for 19 mos. With little to no relief. We haven't been able to get him consistant ongoing care because he has no Ins. We have mostly relied on Emergency room care and a low income Healthcare Clinic in our city. The Dr he see's there will only treat his pain with Vicodin and order Lab tests to monitor the blood and protein in his urine. He's been in the hospital for several overnight stays and twice for long stays once for two weeks and another for one week. During his last stay before Christmas he wasn't responding to the Prednisone delivered through his line. That scared me he has never responded to the pill form before but he's only been placed on it for very short periods of time. In the past he had responded to the intravenous Prednisone well. I was able to get the hospital to perform a skin bioppsy the last time and I was shocked at how much they cut out of him, he required 12 stitches, I guess I assumed it would be a small cut.

I've never been told anything about his Kidneys and how they are doing during all of this. He has become very depressed and stressed during all this and I've now managed to get him help for that throgh another clinic a Mental Health one. The psychiatrist there is researching meds she can safely give him without adversely affecting the HSP. It's been a long struggle so far as he hasn't experienced any lessening of symptoms. In my attempts to get him help I tried to get him Medicaid and was told that he'd have to be declared disabled and the only official declaration of disablity has to come from SS. He's been denied twice and we're now awaiting another determination from then since I sent in the last packet of forms in December.

I hope and pray for your son that this most recent relapse can be brought under control quickly. For me I'm tired and exhausted at how many people keep telling me that it's self-limiting after so long of caring for my own son with no relief.

kel

Hi Camae-

When my son had the spots they only lasted about 5 weeks and went away - never to reappear. Knock opn wood! So the dr's say that the HSP is cured but the nephritis is what we are dealing with now, again. Blood work all came back pretty good. Urine still showing big blood. We are headed back for more labs the end of this week- We decided to meet the new ped. nephrologist.
If your son is showing blood and protein in his urine why haven't they talked to you about his kidneys? These are signs that the is something wrong there. Could the meds he takes cause more trauma to the kidneys- I think I would be all over that one- low income clinic or not- medical bills will be alot more if he goes into renal failure. We never had alot of pain-and Prednisone was discussed but I wanted as did my son to try an ACE inhibitor 10mg of Enalipril
(spelling is incorrect I know) per day, this slowed down the kidneys-thus the output of blood and proteins. We have been very lucky in so many ways. I see that clearly after reading so many terrible things that could have happened. I guess I will keep up on the posts just so that I know what could happen. Please don't take the comment I made about low income clinic the wrong way, I just mean that no matter your income every person deserves the best medical care possible, I was a single parent on a single income when my son was first diagnosed. Keep your chin up- Be strong for your child, they feed off from us and our worries become theirs, he has enough to worry about already.

camae

Now I'm feeling confused, all of the Dr's we've seen have told us that HSP can't be cured but can go into remission. Not one of the Dr's have ever mentioned what you did with the Enalipril. I've never even seen it mentioned on any of the HSP sites I've researched. I will mention it to the Dr on his next visit. The Dr he see's is at the clinic and she's told me that she doesn't feel qualified to do more than try and manage his pain and monitor his labs. Whenever the numbers get too high I take him to the emergency room and he's admitted from there.

emja

Hi Everyone,
My 13 year old daughter Caris was diagnoised with HSP just over a week ago following tonsilitis, She has the usual rash, joint swellings and pain in her knees and ankles and feet, she has been given crutches by the physiotherapist to help support her legs when she walks, loss of appetite (though this is slowly coming back), Stomach pain, weight loss (5ft 2ins and weighs 6st 10lb now), total exhaustion, urine output not much but fluid input normal, Blood and protein in her urine (normally trace but does sometimes go higher in both), im testing her urine constantly and she has to go to the GP once a week to have her BP and pulse checked, we are waiting for her hospital outpatients appointment to come through. Her consultant said he classes HSP as lifelong as you can never tell if it will go away completely, if you will have reoccurances or if it will affect your kidneys longterm but i spoke to someone else who has a child who had it and she didnt agree with the term `lifelong` so i guess i just dont know and will have to take it as it comes!
Caris is not at school and they have been great by sending work home for her and arranging a tutor to come round to her as well(still waiting for education dept to sort that out) but she is feeling very down and isolated at the moment, is there anyone who is roughly the same age that has HSP that would be willing to chat to her by email just to let her know that she isnt alone in this or any advice on how i can help her at all from anyone, i would be so grateful. I have tried finding support for her but the support group in UK doesn`t do anything like that so i rung my team for disabled children to see if they could help (had to explain what it was too them first) and was just rung back and informed that they don`t know of anyone else that has had it in my area that i live plus its nothing to do with them as this disease doesn`t make her disabled!!!

Again any help from anyone would be great or even just a reply to say hi
Many Thanks
Emma xx

sgohlke

My daughter Karley has had HSP for over two years now. She has been through alot i AM SURE she would love to have contact with your daughter her email is karleybelle1992@yahoo.com. She just turned 16 last week. Would like to have more info on her just read alot of my comments on HSP in this section. Any questions fill free to ask. Sylvia

emja

Hi Sylvia,
Thanks ever so much for your reply i will give your daughters email address to Caris, she will no doubt want to read what you have wrote about your daughter to get some background.

I got her outpatients appointment through this morning, the 11th June!! Thats a funny `we will see you in 4 weeks` works out to a 15 week wait so I rung them to find out why and it was because they had changed her consultant to a different one, I said its not good enough her having to wait that long so they changed her back to her original consultant and she now goes on the 28th March. I have someone coming around tomorrow morning from the education department to assess wether Caris needs a home tutor, as shes still got trace blood and protein in her urine, swollen knees, pain in them and her ankles and still losing weight I cant see that they can say NO but you never know! LOL
Thanks again for replying im very grateful to you and your daughter
Emma xxx

camae

Sylvia do you mind if I pass your daughters email onto my son Mik. I'm hoping it might help them both if they can share their experiences.

akwildflower

my son is almost 16 he has has had HSP for 6 months now all of his urine work has been good so far,but he has to take his steriods every month and as soon as he goes off them he can have a relapse.
when he is feeling better he still plays football,i have some doctors who say this is ok
and some not
i am so tired of seeing him tired
he has had a relapse every month is this normal??
thanks sonya

KylieKu

I have a 7 year old daughter who was diagnosed with HSP 3.5 weeks ago after having tonsilitis. She woke one morning and couldn't walk. Had four wee spots on her legs and her feet started to swell. Was told by doctor it was a virus, then took to A&E in afternoon to be told from them too that it was a virus. Next day her feet started swelling even more and going purple. She still couldn't walk so I made another doctors appt for 3.30pm. At 2pm I noticed spots all over her bottom. Took her straight to doctor thinking it may be meningitis. They sent me into the hospital and she was then told it looked like HSP. Had blood tests and was put on drip that night with antibitotics going through the drip (in case it was meningitis as something hadn't quite made sense on the blood test results). Also she had a course of steriods that night. Next morning paediatrican confirmed it was HSP and we were sent home with steroids, and told to give Nurofen. By the way by this stage her hands had swollen too and she couldn't walk or feed herself. I left thinking her spots on legs (which she now had a few) were bad only to discover two days later they were nothing compared to what she then came up with. Big spots on tops of legs. Looked terrible. Then was told to up her steroid intake and give codeine as well for the pain. Her little sister got tummy bug last weekend and my 7 year old with HSP caught it off her so back into hospital we went! She was losing heaps of blood out of bottom as blood vessels around her bowels had given way with her vomitting. They had to stablise her with oxygen, get fluids immediately put into her as she was finding it hard to stay awake. Spent two nights in hospital. Was put on stronger steriods this time to try and fight this HSP. Went and saw paediatrican a few days later for urine tests etc. All looked good, looked like spots clearing up until we got home and they started flaring up again! Her hands quite often have been swelling again (mainly late afternoon) and legs getting sore. Tonight I have had to give Nurofen and Ibroprofen as her legs and just covered with new and old spots and she was in a lot of pain. This is so frustrating! It scares me to think we have only put up with 3.5 weeks of this and by reading all the other stories it can go on for years! She has only been to school 3 half days over the 3.5 weeks. The next appointment was going to be made 4-6weeks but now it has flared up again I may ring and get this done sooner. Does anyone have any similar stories or do you think my paediatrican is doing all he can which I am doubting. I am in a smaller town and my friends has told me she would be phoning Starship in Auckland for a 2nd opinion. The only other thing I think they may do is put her on steriods again - I have been told this is the only other thing they can do for my daughter. Do you know of anything else that may help her? Her kidneys have so far been fine (although no tests been done but no blood in urine when we last went to appt). Look forward to hearing from you
Worried Mum
xxx

Wire

Hi
I'm 49 and have suffered with HSP for about 12 yrs. now.
There are a number of things that can trigger HSP besides a virus. a very good sight for information is Emedicine. They have a number of articles on HSP.

chicken

Hi Bluejay. I must say that after reading your write up it is the only one that has made me feel a little better. It has been 6 weeks since i was told i had hsp. I have been to my doctors every week for bloods and urine checks. My bloods so far have all come back normal but the last 2 weeks i have had small amounts of blood and proteine in my urine. My doctors have said that they are ok with this at the moment and continue to monitor me on a regular basis. My legs were coverd in these dreadful rashes which then started to fade away but then i got them on my arms and torso and backside and tops of legs. They have now started to come back on my lower limbs and also on my hands i feel so worried about this but my doctor said that this can happen and it may take several months to go away. I do have a few pains with my limbs at the moment. I am back at my doctors tomorrow for the blood test results taken last wednesday. Thank you for your comments as when i read others i feel i am at deaths door and this is depressing me so much.

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