HSP...the ongoing saga

Dear Mary and Steph and others concerned,

Her is the story regarding my daughter who will soon be 22.

She became ill in March of 2014 starting with severe flank pain and some vomiting which lasted for about 2 weeks and then was followed by severe joint pain of the knees, wrists, elbows and ankles. This then was followed by purpura rash on her lower extremities ( lasting for about one week) then would dissappear and move to her thighs and vise-vera for about one month. Also accompanying this was the joint pain and swelling which became extremly arthritic and very hard for her to get out of bed as it was crippling for about a week. Also accompanying this was the inability to keep any food down or even eat as the gut pain was very severe. After many many trips to her Primary care physician, ER rooms, 2 hospital stays, my  late nights of online research (as a current Nursing studen)t, and finally the University Of Michigan Hospital she received a diagnosis of HSP three months into her illness. My daughter was 24 lbs lighter at this point, anemic, underweight, arthritic and had all the clasic signs of HSP. Her blood work showed increased IgA (immunogloubin A), increased sedimentation rate, increased CRP ( proteins) which all pointed to HSP as well as a biopsy of her rash (purpura). She was then given 20mg prednisone, a GI cocktail, Iron therapy, and anti-inflammatories (not ibuprofen since it is not good for the kidneys and HSP can affect kidney function) to control her disease and pain. After discharge she remained on all meds and was on frequent visits to her local primary care physician when needed, and 1/3month visit to U of M rhuematology dept and Urology for follow-ups. In the process the Dr tried tapering her off of Prednisone approx 4 times with no success as her swelling and arthristis would flare and she would not be able to eat. Finally she is down to 2mg of prednisone/day eating ok, but still underweight and perhaps may remain underweight since she was ill for so long, all blood work shows normal ranges, she takes a multi-vitamin daily, drinks a high calorie/carb/protein smoothie daily, still works, goes to college and is persuing a degree in accounting. Please message me with any questions or comments if you wish as I have studied and learned much through this whole process about this intricate auto-immune disease.

Hi Amy, thanks so much for your comments, feedback and knowledge. Like you I have done my research as I had never heard of HSP before my daughter became so poorly. I have found her consultant to be really good as were the ED dept but the local GP's shamefully ignorant of how badly the immune system is affected....for my daughter it was a total crash. We are used to her blood and protein spiking all the time...it goes up and down daily. This episode however has been really awful. We are on day 14...she is still off school...today her blood is +4 and protein +3/4.....the consultant believes the HSP virus is sitting on her bowel hence the abdominal cramping. She has told her to take up to 600mg ibuprofen as her kidney profile is ok at the moment. I am hoping she may do a half day at school tomorrow although she probably should still stay off, she is eager to see her friends and get back to " her world".,,,,it really is a vicious, relentless virus and to be honest there is very little that can be done. Thd consultant has said monitpring will be at least for 3 years.

I wish your daughter better health. X

I really feel for you and your daughter Steph. It's such an awful thing!

My GPs have said they aren't concerned about blood in the urine, it's the protein they look out for (so why check for it!?)

We are seeing a children's GP on Monday so I can ask about multivitamins etc then. My daughter has gone back to school half days from this week so I'm hoping that goes ok.

I really do hope they do more research into this awful condition so more parents don't struggle with information!

4-6 weeks and it should resolve we were told, from what I've read this is in the minority of cases?!

Fingers crossed for an improvement for all!

Thank you Amy x

Dear Mary,

I think it was about 6 weeks til my daughter felt well again after the initial onslaught of HSP. However the spiking in the blood and protein is daily changing even now 13 months on. She was told no PE at all for at least the first 6months...because the kidneys were not filtering through quickly enough, sport obviously increased blood flow therefore after PE or strenuous exercise she was achey and her joints became swollen and stiff . The check on the blood in the urine was to show if kidneys still had nephritis or bleeding which to be honest with you still appears on and on 13/14 months on. Yes though we were told the protein was the problem. Ultrasound showed no damage had occurred to the kidneys which means they have put the biopsy on hold...my question to the consultant was what is the value of a kidney biopsy? It won't help her recover, it shows scarring etc but that is forbtheir records and frankly I am not agreeing to a general anaesthetic and invasive biopsy for nothing than a statistic....unless it is vital. I hope that the flate ups lessen over time....the trouble is when someone at school has a cold or cough she gets it 5x worse as her immunity is still very compromised. Every tummyache or joint pain is scrutinised by me now...sometimes she says.." Its just a pain because i have a pain not because its HSP"....the voice of a now 13 year old...in other words, trust me i can tell the difference. She has missed alot of time off school over the last 13/14 months though and if she was older that would be a nightmare with exams. She was due to sit a grade 6 music exam but i have pulled her from it as I want her to have no stress or pressure and relax although a terrible shame as her music is her passion.

Hi Rachel,

Your poor poor granddaughter....awful.

I was told by my daughters consultant right from the word go that she would be under the hospital for 3 years as HSP tends to rear up and down once it has struck. Certainly my daughter has had regular flare ups....we are still dealing with the huge relapse ...this episode has been going on for the last 7 weeks and has beenworse than the inital onset....the symptoms last time were the horrific rash and swollen joints and vomiting. This time as well as persistant kidney nephritis and high protein in the urine , she has had excruciating stomach cramps and her bowel is full of black shadows indicating swollen lymph glands. She is back to the consultant on monday...we need more than ibuorofen and paracetamol but steroids made her poorly last time. Feeling that this isnever going to end.

Steph x

Wow...... My granddaughter doesnt seem to be having trouble with her kidneys. That's amazing since she was so sick. She's probably going to be checked for arthritis. Do you know if HSP can lead into arthritis? I'm glad this forum is here. Other people who know what's going on. So many people say not to"baby" her and that she's using the HSP excuse for not doing anything. Welllllllllll. She's swollen and bruised so I think it is the HSP DUMMIES. Ok. Sorry. That's not for you guys. I was just venting. I took her to the doctor last night and she's got to go to get blood work done. Ugh. Thanks.

Oh Rach, I know exactly what ypu mean...people think they are making it up. My friend is a consultant and both she and the consultant at the hospital said do not understand the severity of the pain, it can be agony. My daughter gets swollen joints when her kidney nephritis is bad...and it is so very painful. Ignore people with no experience of this and I have learned not to underestimate the pain. Poor kids and everyone who suffers with this...it seems to be a really nasty condition that is more common than people think. Best of luck to you and your granddaughter. X steph

Hi all, we are about 7 weeks in and a new rash has decided to appear today, this is nothing new and I am getting used to it now. I am pragmatic and try to apply a common sense approach to rest and a healthy diet as that appears to go a long way towards recovery. Last week we managed a full week at school but wheelchair bound, we had been okay this weekend, walking unaided and seemingly okay but today we face the new rash (probably rash no 6/7) and a head cold (we've kept a diary). I wonder how this head cold and fatigue will further affect the immune system! It really is a case of steps forward then a similar number of steps backwards. When we say no PE, what we really ought to be stressing is no physical exertion! Trying to speed up recovery isn't helpful, just take things one day at a time and expect some relapses. Anyone that hasn't had or heard of HSP won't appreciate how you can be okay one day but not the next. These forums are helpful as they begin to assist others in devising coping strategies.

I think you have hit the nail on the head....my daughter hadn't done PE for months...any exertion and the next day she pays dearly. It is such a hard condition to explain to people....if you had a plaster cast or bandage people would perhaps be more willing to understand. The full implications of this condition were never explained at our loval childrens hospital ( UK) it was all dealt with promptly but the actual repercussions and severity really need to be explained to patients when they are diagnosed in my opinion...never ever underestimate HSP!!!

I agree, a patient guidance note would be beneficial. We were told the condition was HSP upon immediate assessment having ruled out meningitis, nothing said about day to day expectations other than no PE which I naively interpreted as no sport. Usual advice on out-patient management and urine/blood pressure checks due to possible longer term kidney damage but no real guidance on longevitity of the condition which I am seeing more frequently as months not weeks.

Absolutely....we were told by the consults in A&E that it was HSP pretty quickly as the rash looked like meningitis and so was ruled out by immediate bloods. We were given a photocopy print out about HSP as I said I had never heard of it. I had no concept that my lovely girl would be at times too ill to go to school for weeks on end, chronically tired just washing, that she at times would walk like an old person from her painful swollen joints, that her kidneys would bebleeding and storing protein, that her blood pressure would be sky high and that in the worst case scenario her kidneys could fail long term....how can there be such little advice for patients/parents/carers? Seems the condition needs reviewing.