I had a large blister on the side of my little toe, it healed eventually but left me with a very painful black area where it had been. At night, when I sleep on my side , that area rests on the mattress and it is almost unbearably painful for such a tiny area and wearing shoes rubs on it no matter how I try to protect it.
I also have infections at the base of my finger nails and I have noticed that when the area heals it often goes black first. This also happened when I recently had a paper cut on my finger.
I have wegeners/GPA and am mid flare and back on prednisolone as well as my plaquenil and waiting for rheumy appointment which I have annually in October but was delayed until January but still waiting.
Any thoughts or advice?
Written by
AllyGY2013
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Have you let your GP see it? It's difficult to say definitively but the rule out needs to be a necrotic area secondary to poor blood supply which can be a problem with GPA.
You really need to see your Consultant as a matter of urgency and be treated properly. What dose of prednisolone are you on? I suspect you need other immunosuppressants, Plaquenil won't be effective in active GPA.
Sorry, me again. I tried to find an article with some images but couldn't find anything suitable.
Google digital ischaemia and see if the images look similar to your lesions. Either way please get it checked even if it's just to rule out ischaemia.
Ally, if you think it is ischaemia then you really need to see your GP tomorrow. These things only get worse over time. It needs treating as a matter of urgency. I don't want to alarm you unnecessarily but better safe than sorry.
I live in Guernsey and the only treatment options we get are GP and one of the 2 rheumatologists who visit the island once a month. Just changed rheumy so haven't met new one yet although I have been told who he is.
Plaquenil is not used for treating WG (GPA) , Prednisolone will only act as a sticking plaster. You really need to see a doctor who knows about Vasculitis, especially WG (GPA) . I have seen patients lose their fingers and toes due to WG so please ask for an appointment urgently.
Thanks Susan, unfortunately as I responded to John getting help locally is difficult as we just don't have the expertise here and our Health and Social Services Department don't have funds so it really is difficult to get any advice or help locally. It costs them huge amounts every time someone is treated off island so they try their best not to send anyone away.
Not wanting to scare you - if your GP doesn't respond to these apparently necrotic areas and incorrect therapy it will cost them an awful lot more in the long run. Necrotic areas can spread until, as Susan says, finger and toes have to be amputated - and left too long it is more than just fingers or toes and all the costs of rehab and social services.
Have you not got friends or relatives on the mainland you can visit? I don't think a decent A&E would turn you away with signs of necrotic tissue.
i see you have not responded for a few days. Have you managed to find a way forward? Who is your new rheumatologist? We are always very happy to support rheumatologist & other consultants who might have little experience in treating vasculitis by putting them in touch with someone with lots of experience.
I saw my GP, who has an interest in rheumatology, today and he says I'm a mystery, no change there as that's what my previous GP who retired at Christmas always said.
He looked at my toe and my fingers but is baffled, he asked me if I thought it was the vasculitis - yes I do.
He is going to chase the rheumatologist for an appointment (his name is Dr Christopher Holroyd) as I say I haven't met him yet, my previous rheumy no longer comes to Guernsey.
He said one of my test results was significantly high it was 51 three years ago when this all started and they got it down to 35 but is now at 54, I'm sure he said it should be 3.4 but I don't know which test this was (he said I thought I'd remember but didn't sorry!). I suspect it is the expensive one that takes a month to get the result back as it goes off island to the UK to be tested, so they only do it once a year and they have to explain why it is necessary to ensure it gets done.
I'm not really much further ahead except I think he will have more luck getting me an appointment than I will!
Apparently this is the longest I've been on prednisolone and he wants to get me off it but I reacted badly last time we tried so, as I am on 15mg a day, he wants me to drop that to 12.5mg from tomorrow for 2 weeks and see how I go, then reduce to 10mg if I can and see him again in a month.
No doctor wants you to be on pred any longer than necessary as the side effects are not good, but if you reduce the pred and things start to go wrong, it suggests that it is only the pred that is keeping the disease under control. If that does happen, it's a good excuse to demand an early appt with Dr Holroyd.
I too feel 'uneasy', with regard to your descriptions, in fact I don't like the sound of it one bit! I would insist, and I mean insist, on having this checked out immediately-NOT when 'they' can fit you in, NOT when 'He/She' is next free.....NOW!!! Yes I AM this worried. Please do 'jump up and down' metaphorically'- to begin with anyway!
Please do let us know how you get on, we are all praying for you babe.
Kindest regards AndrewT
will you be able to post any photos at all? Personally, a visit at the nearest emergency room would be needed..Hope you have done this by now...tc 💐
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