I am new to the site and wonder if any of you have had vasculitis of any type along with PSA, especially henoch-schonlein.
I was diagnosed with PSA in 2005 (pitted nails and sausage digits) and had been doing really well on humira for years. Not too frequently, I would have some back pain and what I describe as a fevery spine/head (feels like swelling and heat all along spine and into head...makes me confused and sometimes dizzy.....i use ice packs all along spine and all over head). Again, this was not too frequent and I felt I was managing well.
Then this past December, I suddenly had a purpuric rash on feet, legs, elbows, and rear end. Biopsies were done and I was diagnosed with Henoch Schonlein vasculitis. I have been on several rounds of steroids, but whenever we taper off, the rash comes back. I have been taken off Humira in case that is the culprit, but after over a month without it, the rash persists and my PSA is flaring. I have been put on methotrexate, but it makes me ill. Dizzy, nauseus, confused.......is it the methotrexate or my PSA flaring doing that? who knows? I haven't taken methotrexate for a week now and I am dizzier than I have ever been. Cloudy headed. Fevery spine.
Help???? Anyone with vasculitis? Have I perhaps been mis-diagnosed?
There are a number of cases of Vasculitis reported by folks with PsA. It is after-all an inflammatory disease. Although it is more common with RA There are also reports of it being caused by the Biologics and is now listed as a possible side effect.
Sounds like your Doc is on the right track, but I would ask him if by now he has been able to rule out the Biolgics as the cause? More often its brought on by a throat/respiratory infection or Chrons disease (another gift from PsA.)
5 months seems like a long time to have it. Usually it clears up on its own and stays away after. BTW MTX is also known to be a cause. I'd be concerned about that long on steroids too. Ask him if maybe it time to try some of the Cytotoxic drugs such Cytoxan. I have friend who got it unde rcontrol with Remicade.
Hi I don't have vasculitis, but my friend's daughter has a VERY severe case of it. She says the vasculitis foundation has a great website with lots of information. www.vasculitisfoundation.org. I also know that RA runs in her family.
Thank you all for your responses. Saw my rheumy again today and she is still believes Humira is a likely culprit. Due to my dizziness and bruising, she doesn't want me on methotrexate anymore either. She has started me on enbrel (first shot in office today) and has given me a scrip for prednisone in case I feel I need it (due to me going on a little international vacay this week). I am hopeful that I will feel better soon. This dizziness is awful and I hope the rash will go away soon also.
Sorry you are having such a difficult time of this, I wish I could have been more help, I have a vascular problem in hands and wrists from secondary Raynaud's Phen., but it is nothing like this. I hope this is remedied very quickly for you.
Update: after coming off the Methotrexate and swithching from Humira to Enbrel, things improved. The purpura is almost entirely gone....just a tiny number of spots continue. However, the dizziness is back and this weekend was the WORST ever. I was so dizzy I had to stay in bed with ice packs on my spine and head for comfort. When I am dizzy, I feel like my spine and head is inflamed. I haven't vomited but I do feel nauseous. It doesn't affect my appetite. I eat like a horse :)
I also do have some phantom sensations like crawling, biting on my feet and legs and an occasional brief stabbing pain.
Anyone have anything similar or heard of anything similar? My rheumy has ordered MRIs on my back and head so we shall see.
Regarding the phantom pains in your feet - I have a different form of vasculitis, and it caused peripheral neuropathy. It hit my feet/ankles/shins. Numbness, shooting pains, tingling, shocks. So bizarre. If that is diagnosed (neurologist does a nerve conductivity test), there are meds to reduce the pain. Good luck with your vasculitis, it takes quite a while to recover.