Hi, just wanted to know if anyone out there with vasculitis GPA, is experiencing erosive arthritis in their hands? I have over the last year experienced a lot of pain in my hands and have a growth on one of my fingers, which is apparently a soft tissue swelling. I just wanted to know if this is something which can happen with vasculitis. I have also noticed in the last couple weeks, a strange feeling in my shoulder joint, pain and a feeling as if it’s going to pop out. Are these joint issues common and what can I expect going forward.
Thank you for taking time to read this post, best wishes. 😊
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Hi, I was diagnosed with GPA in 2012 with airway issues, and I have had joint issues on and off. Initially it was random ankle or shoulder problems that would cause extreme pain for 1-3 days and then the pain vanished for months at a time with no meds at all. It was most odd.
Over the last 3 years I’ve had more persistent issues with my hip and leg muscles and joints as well as my shoulder which have needed low dose steroids on and off to clear. It feels as if this joint involvement has set in, but my consultant thinks with my GPA variant it will blow through in time. I’ve had tests to check it isn’t anything other than GPA which were all clear. My days of swimming a mile a morning and running 5k - 10k are currently a distant 8 years ago but I’m still hopeful this may indeed blow through.
Good luck with your journey vasculitis can be a downer at times, so I try and wring the most out of the good periods and ride through the rough stuff.
Hi Pompey3, thank you for the reply and sorry to hear of your ongoing issues with this condition which keeps on giving 😂.
My hand issues, have started over the last 12 months, swollen joints which have got increasingly painful, then this soft tissue growth which has appeared on one of my fingers knuckles. As I said I have been diagnosed, but I just was wondering if this is an issue with long term GPA and use of steroids (currently on 2 x 10mg and 5 x 8mg) on slow taper due to hideous side effects. Also other joints have started to present strange pains etc.
Anyway thank you for taking the time to reply, it is helpful to hear of others experiences. Best wishes.
My consultant seems more tuned into the joint pain stuff now compared to 10 years ago - I think they are learning fast now with data analytics helping their understanding. The medics seem happy with very low dose steroids whereas 10 years ago they were focused on 1mg/kilo of body weight which is why I refused to take them for years. I posted a link on this site a few months ago where the American vasculitis site has a great video setting out the different types of GPA and the likely progression path for each - it’s well worth viewing its an hour long.
For me the joint issues were definitely not caused by steroids as I’d never taken any at all until 2021, and I’d had many joint pain issues before.
The video is in the resources section on Vasculitis.org.
Hi sorry it took me a while to find the video again, the USA site has so much new content all the time - the linked you tube channel has so much good stuff on it but for me this was the best explanation of what is going on with all the various GPA variants.
If you copy the URL below into your browser bar it will take you to the landing page - scroll down the page towards the bottom there is a section with three videos - this is the middle one coloured orange titled Granulomatosis with Polyangiitis - I think Peter Merkel is super interesting.
Hello I have MPA diagnosed about 3 1/2 months ago. In the last few days I have experienced a fair amount of muscle/joints locking in both my hands. Last Friday I mentioned this to my nephrologist who said it was not arthritis. My own research seems to indicate something called "trigger finger" possibly attributable to carrying heavy loads with my hands. I'm a bit confused at the moment what is really happening and whether it may be something related to rheumatism. Not sure if helpful at all but thought I'd pass along anyway in case//
snap. Diagnosed with GPA 8 yrs ago and for the last two years have had exactly the same happening to my fingers. I’ve had a Dexa scan and have two broken vertebrae in my spine which I had no notion I had. And serious issue with osteonecrosis of the jaw due to taking Alendronic Acid for just over 5 yrs, confirmed at hospital dentist. So I’m afraid the medication to keep us alive can have consequences. But hay ho. My osteoarthritis is linked to vasculitis - which I had for 7 years before being diagnosed.
Oh wow it does sound like me, thank you for the reply 😊. I’m struggling with pain in joints, especially in my hands, what do you use for pain, as my usual pain meds is not being as effective. Is it Alendronic acid, which can cause these issues, as I also had that for 5 years?
Yes Alendronic Acid can cause side effects but not everyone will react the same. I didn’t need any painkillers for the lumps in my hands. They eventually went back down the lumps. At the moment one or two joints are swollen and sore to touch but again I’m managing without pain control, but everyone’s pain will be different.
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