newly diagnosed and very confused, any advice appreciated

[Smiggy2]

hi

So pleased to find this board

I’m 60 and was fit and well . Last Tuesday one elbow started aching a bit and my feet were a bit sore . Wednesday morning I exercised two horses then went to work . As the afternoon wore on my lower legs and feet were getting really sore , like I’d run a marathon and I could hardly do the stairs . Went home and when I undressed to shower I realised I had a horrific red rash all over my lower legs and my legs were so swollen I didn’t have ankles.

I went to a and e as I was worried it might be sepsis and also had been on holiday in Africa the previous week .

They did bloods and urine , young lovely doctor had no idea and we were just throwing potential diagnoses at each other ( I’m a vet) . Luckily for me, the senior doctor that came on shift at 5 am was a rheumatologist.

He instantly diagnosed it as hsp ( but said it might be another kind but would need a skin biopsy)

His initial plan was to send me away with nothing but I said was there nothing they could give me as I literally couldn’t stand on my legs at that point . So he has given me 30 mg pred a day for a six week tapering course and basically that’s it

He just said 6 to 8 weeks , it might get better before it gets worse and then that’s it .

I’m actually feeling much better now as in can walk without too much pain but have googled and read here and am worried that he has told me the advice you would for kids but not adult onset.

Nothing was mentioned about kidney issues but I know I had proteinuria in the hospital and I bought some strips from Amazon and still do now .

So what I’m confused about is do I follow his advice and just taper the pred and forget about it , or should I find a rheumatologist and persue a monitoring plan for my kidneys . Luckily I have health insurance so that’s marginally easier than it might be .

All advice appreciated, thanks

[Support_helps]

I was was diagnosed with renal limited vasculitis at 60...if you can see a nephrologist I would recommend it especially given the rash and foot swelling. Did your bloods show normal creatinine levels?

[Chocolate78]

I have a different type of Vasculitis so I only know what I've read online about HSP. I had to go private to get a diagnosis and I've had to push to get anything done. Personally I would go to your GP and ask them to test your kidneys. Be proactive as your only feeling better because of the steriods.

[RedPoppy2]

Hi,

Sorry to hear you've experienced this. My 21-year-old daughter was diagnosed with HSP last April (whilst living in France) and we've really struggled to get her GP to take this seriously (by her own admission, she knows nothing about vasculitis - she's probably Googled it and seen that it's a self-limiting childhood disease). She has since also tested positive for ANCA and now has a referral to Rheumatology, although I suspect a non-urgent one, as it's a 7-month wait.

I would definitely use your health insurance to get a second opinion. We were recommended Taryn Jungstein (Rheumatologist at Hammersmith Hospital's specialist Vasculitis Unit) - she works privately at the Cleveland Clinic in London.

Hope all turns out well for you

[poppet2]

I would definitely seek a second opinion and regular blood tests to monitor your condition.

[Mooka]

I can’t help you with HSP but keep to the more reputable sites. Have a look at vasculitis U.K. and give their helpline a call if you have any questions.