Anyone had hsp as an adult ?

[3smallpups]

Diagnosed last night after two days of worsening joint pain followed by sudden appearance of swollen ankles and legs and a horrible rash.
Currently struggling to walk as knees and ankles so swollen and my feet are incredibly tender.
Just after any experience of how long joint pain and swelling might last so can plan re work etc.
Sod's Law DH Is away for the next two weeks as well .
Currently can just about stagger from bed to loo, but going to have to man up and get on with it later .

Shameless bump as desperate to speak to a normal person who has had this .
Found a Facebook page but they are always a bit self selecting doom and gloom merchants.

Who diagnosed it? I don't have HSP but a different similar type of vasculitis. The fb vasculitis group is brilliant- they have a helpline too.

DIL however did have HSP as a young adult. She had kidney involvement too and it took around 9 months to feel properly back to normal.

Thanks for reply
Went to an and e on Wednesday night as the swelling and rash developed in a few hours and I was worried it was sepsis.
They really had no idea and was there all night while they did tests but the senior doctor that started first thing happened to be a rheumatologist, luckily for me and he diagnosed it. Said it could be one other kind but would need skin biopsy and that it didn't really make a difference
It's v weird , I'm 60, didn't have a previous illness
Rode two horses Wednesday morning then my legs started aching.
Never had any issues like this
Currently struggling to do anything , using a wheelchair in house !

Did they offer a follow up or any meds? DIL couldn't have nsaids due to kidney involvement (did they check your kidneys?) but prednisone for the joint problems. At one point they were considering cyclophosphamide but she started on azathioprene which is an immune suppressant instead. She had to have bloods every 4 weeks but it's dropped to 12 weeks now.

I hope you feel better soon

Oh and did they do a ct scan to make sure there's nothing else going on? If not can you ask your gp for a referral? I'm suggesting this because I was initially diagnosed with fibro, then HSP and didn't get to the correct diagnosis until I was quite unwell.

Hello, I’ve had HSP on and off throughout my adult life - only had medication for a short period of time and just put up with it whilst it was flaring up. I know how horrible this is - so sorry. Unfortunately I developed quite serious eye problems - not specific to HSP but related to having an autoimmune disease. It sucks.
Quite often the flare ups will die down but it can take some time. I found that plenty of water, rest and limiting stress would helps - also cutting back on sugar. I haven’t had a flare up in a few years and I’m sure lifestyle changes have helped.

Just out of interest, have you flown anywhere recently?
I hope you feel better soon 💐

@NikkiAlexander
Thanks
They did give me prednisalone as I begged for something to make it go quicker as have a riding competition in 10 days that I have spent months and lots of money qualifying for for he actually got quite invested in the concept and was asking how thick a pair of socks I could wear to stop the spots rubbing 🤣
Have felt it was unlikely as using a wheelchair to get around today but actually my legs are starting to improve, I have some kind of ankles back !
I did have proteinuria and have ordered some urine test strips so I can keep an eye on it
Thanks so much for your advice

@Woodworm2020 sorry that you have struggled with this
Yes I did fly, we got back from the Gambia ten days ago . I think that's partly why an and e were concerned in case it was something infectious .
Is there a known link ?

How are you feeling now @3smallpups?

I don’t think there is an official link but I used to travel a lot for work and without fail I would have a flare up on the flight, or soon after. It could have been the flying itself, the stress of the job, or frequent time zone changes that did it or a combination of all or just a coincidence.

HSP is so rare in adults and little is known about it. I was told it would be one flare up and then it would go but unfortunately it didn’t work out that way for me (but I am fine now). If you find that your having relapses and flare ups please consider looking into the autoimmune protocol diet - it really did help for me.

Hope it’s settling down for you!

Thanks
Actually feel much better today
Swelling in ankles and legs much better, can wear normal socks and feet hurt less. Can walk, albeit slowly
Elbows bit tender but as long as I am careful it's ok.
I was told by rheumatologist that it was a one off, better in 6 weeks, all good sort of thing. Then got worried when googled as more cases seem to be like yours with frequent relapses.so was a bit confused.
I suppose it's a case of wait and see
It's just so weird, was like a bolt out of the blue. Am 60 and never had any kind of autoimmune issues and hadn't had a virus, that I was aware of.

I have never had it but my DS had it as a baby…it was the craziest, strangest “rash” I have ever seen. It came up right in front of my eyes