38 and just diagnosed with HSP
Posted , 8 users are following.
I am 38 and have just been diagnosed with HSP and have a few questions about it.
1. Does prendasone do anything for it or does it just run it's course?
2. How long does it take for the swelling and blotchiness to go away?
3. It seemed to stop just above my waist. Will it go any further?
4.is it odd for someone my age to get this? Seems like from what I read it happens mostly in children. I'm trying to make sure the diagnosis is correct. All labs came back normal including platelet count. Going back tomorrow for redo of blood work to compare to the previous.
The worst of the broken capalaries is between my knees and my feet. Though it does not look very nice from the knees to my lower back.
Any help would be much appreciated. I am loosing my mind right now trying to get to the bottom of this.
1 like, 36 replies
helen68675 Blilly622
Posted
Hi
Sorry to hear you are suffering from this. My son now 16 has had it about 18 months. His first year was terrible, rash on legs and arms stopping at lower back, swollen and painful joints and abdominal pain. Only thing he could take was paracetamol because his kidneys were affected (leaking blood & protein in urine) he was unable to take ibuprofen. Ice packs on joints. Has had two kidney biopsies. Ranitidine is good for the stomach cramps.
Then finally after a year he was put on prednisolone starting with a 60mg dose in February and has just finished a reducing dose. They helped lots. Now on Azathioprine given by rheumatologist and this seems to be keeping it under control.
Take each day as it comes but my son is much better than he was last year.
Good luck
Helen
joanne83985 helen68675
Posted
I was under a renal specialist for 18 months when I was younger and again when I had a fare up when I 30. It's horrible but so rare a lot of people haven't heard about it. I can't give blood, I can be on a register for bone marrow transplantation. I'm not aloud to to take any anti inflammatory meds. I lead s totally normal life I just worry when I get tonsillitis for the 20th time and I expect s flare up. I hope your son feels better soon x
helen68675 joanne83985
Posted
I had never heard of it before and neither had anyone I know. The renal doctor and rheumatologist are seeing him regularly and keeping any eye on him.
Sometimes his rash will flare up but we have no idea what causes it to do this.
Such an awful illness for anyone to go through. We couldn't believe there was nothing to give him which would clear it up but there doesn't seem to be any research into HSP.
Take care
Helen
joanne83985 helen68675
Posted
I had it first in 1997 and non of the doctors had seen it before they had student doctors taking photos and taking samples from the blisters I felt like s freak show. I had reacurring tonsillitis. They said to me we won't remove your tonsils as you can get tonsillitis without tonsils. So I went to the doctors he gave me a throats spray. When I ended up in a wheel chair unable to walk vomiting the doctors at the hospital told my parents I had meningitis. It turned out to be hsp and I was told it was the puss from my tonsils that had poisoned my system. I have scaring on my kidneys and been told very little about future prognosis. In total I've had it 3 times I was told I was a rare case and it should have recurred as often. It only occurs with tonsillitis with me.
ashley54114 Blilly622
Posted
I am 32 and have has all those bad things happen plus lost my kidneys cause of this hsp disease, the rheumatologist said I was the worst case she had, she can't figure me out and we keep on trying new meds, but we all have to stay strong and be positive.
Blilly622 ashley54114
Posted
Sorry to hear that Ashley. It does suck that's for sure! I go to see my rheumatologist tomorrow. Just got my labs back and did find trace blood and protein in urine. My ankle looks like a softball and everything turned to blisters now. I keep putting bandages and gauze pads on and stuffing them in my work boots. Not sure how long I can do this
ashley54114 Blilly622
Posted
AndyMcUSA ashley54114
Posted
Hey Ashley
Don't know if they have tried this on you but I was out on Cyclophosphamide by my nephrologist and that stopped it attacking my kidneys and after 5 months I got weaned off it. Not real fun on it but not too terrible. It was given together with Prednisone at 80mg initially that I ended up tapering off in April.
Hope you get the help you need. I ha e been under the doctors at OHSU in Portland. Awesome bunch of doctors.
AndyMcUSA Blilly622
Posted
Hey Billy
Sounds like you are progressing exactly the same as I did. Eventually I ended up at the ER at OHSU I'm Portland, Oregon and that is where they got me back on he right track. By that time I had blisters all over my legs and was in a wheelchair. They gave me two days of super high steroids and then out me on Prednisone and Cyclophosphamide. When I went in they biopsies my kidneys and I had lost about 20% use of them, but they halted it with those meds.
The demo guy there out me on silver sulfadiazine with Coban compression dressings changed twice daily. Took about six weeks before all my wounds closed.
Knowing what I know I would try to find or get referred to a nephrologist and if you need more information on who my doc is I can send you by other means.