6 years now.

Unfortunately welcome to the club !  That immunesupressant did they give you and why did they do that and not something like steroids such as prednisone first?

I sympatherise with your pain, must be difficult coping with young children.

My husband can hardly walk at the moment and his hands are affected.

He has had steroids injected yesterday have you had steroids.

Are your kidneys ok?

Can I ask was it after an infection you became unwell?

Mrs.. Boshell

I have been daignosed with HSP within the last 6 weeks. Severe blisters on legs and ankles. I've spent 1 week in Houston hospital on vacation with severe gi beeding and am currently in NYC with serious kidney problems. You need to be careful with the gi and kidneys. Things change quick. I've been told that I have a really bad case of it but they should definitely be watching kidney function. They did high dose steroids to get things to slow down which did work but now I've started chemo to get rid of everything and hopefully keep it away. If you have bad skin legions dapsone is amazing! My dermatologist and the folks here in NYC say it's best. I traveled 4 hrs to NYC to get to the best kidney docs in the country. The Mayo clincic I heard is also great. Sounds like your on the right track! Keep strong and fight. Also I am 38 fasther of 3 so I feel what your going through! Good luck with everything. I am supposed to be checking out of hospital today!

B

Hi MrsBoshell14,

Welcome to our group  

I have had HSP for 14 months now (after a viral infection) and I can really sympathise with you regarding the pain and flare ups. I'm 41 from Kent, UK and a mother of three (aged 22, 7 & 6) and I have regular flare ups and I'm always suffering with pain in my joints. I take Methotrexate to suppress my immune system but I was previously prescribed Prednisolone/Predisone which helped me put on four stone (fifty six pounds) so I refused to take them after that! I also take many more medications to help with the pain and also to help with my other illness, Fibromyalgia.

I'm sure we all agree when I say, feel free to vent your frustrations here!

Best wishes xxx

 

Thank you for sharing your story. I was just diagnosed with HSP about a month ago, and nothing the doctor's are doing is helping. They seem to think it will be going away on it's own, but it's only getting worse. I am in my last semester of graduate school and now fear I will never finish. I am so scared. 

Based on yoru experience, I have put in for an appointment at the Mayo Clinic. I hope you get some relief soon; I hope that for everyone. 

Well sounds like you are in the right spot. I am back at local hospital and babe been for about another 2 weeks now with no end in sight. Kidney creatine went from 3.4-5.0 overnight. Stage 5 CKD. This is no joke!!! I am on high dose IV steroids, I do plasmapheresis every other day for a total of 10 treatments, and cytoxin chemo based drug to help the inlamation.