My rheumy man thinks I have vasculitis caused by rheumatoid arthritis and I am awaiting infusions. Just wondering if my vasculitis is treated would my EM go away.
Hi, When I talked about my symptoms to my doctors, that’s what they thought I had (especially Buerger’s disease, Because I smoke). Seems like some vasculitis can cause symptoms that are similar to erythromelalgia. I hope for you that you found your cause
Hi,
It might well be Beurgers I have as I have loads of ulcers on my feet and legs and I seem to remember it causes ulcers. I also smoke. I have my appointment for my first infusion now it’s on Tuesday. I just hope it helps and my ulcers start to heal.
That’s the theory! I have vasculitis which has caused erythromelalgia. it is small vessel nerve vasculitis which is hard to treat. I have tried Cyclophosphamide which did not seem to be doing any good and had difficult side effects but right towards the end of the cycle of infusions, for a couple of weeks the EM lifted maybe 50%. So I am optimistic that you may be able to improve your EM by treating the vasculitis. Good luck
ajh
It would be wonderful if it helped as I was thinking this was it for life. My rheumy man told me about Cyclophosphamide, but said it had really bad side effects. He is actually using Rituximab, which he said has far less side effects.
Rituximab is what I want to try next. Not so easy on the NHS (UK) for nerve vasculitis (ok other types vasculitis) - will probably have to go privately.
will be good to hear how you get on. Take care ajh
Where are you in the UK. I am in Cornwall. My rheumy man said he would have to talk to people to be able to use it as they normally want to try the Cyclophosphamide first. He got permission.
A bit late giving a follow up to this! Partly due to my being in hospital for an amputation of my right leg.
My rheumatologist got permission to use Rituximab don’t know how he managed it!
I have had 2 infusions up to now. The results are incredible. Just a shame they didn’t find out earlier that I had rheumatoid vasculitis as I wouldn’t have lost my right leg. The good news is that there has been a dramatic improvement in the ulcers on my remaining leg unbelievable. Not only that my EM is nowhere near as bad as it was. Not completely gone, but bearable.
I go back tomorrow for my follow up appointment the rheumatologist doesn’t know how much good it’s done yet. I hope to have another infusion 3 months after the last one and then it’s just annually.
1 Like
Sometimes it would be much more fun if our physicians were gods.
I’m glad you found something that works Sheltielife
Yes if they were gods they would know the answer and be able to find a cure!
Whilst my ulcers continue to improve my EM is actually going worse now. It’s nearly 3 months since my last infusion. As I said I had hoped to have another 3 months from the last, but I have just got a letter from my rheumatologist who is talking about 6 months since my last one. He does say if there are any clinical changes he might do it earlier so I am wondering about asking him if he will. The danger of having too many is it weakens your immune system, but I think I would rather risk that. Just got to make sure that people that visit me know not to come if they have any sort of infection.
hi Sheltielife
I am now on RTX with Dr David Jayne at Addenbrooke’s. I had to use my insurance to get started and had 2 infusions two weeks apart. Then DJ pointed out that I would qualify for RTX on NHS and I am now on 1 infusion every 6months called a ‘maintenance dose’. Does anyone in the uk have anymore than that? I honestly don’t think I had remission but the initial double dose did help a bit. I have heard that the patent on RTX is running out and it should then be cheaper. would welcome comments from anyone with experience of Rituximab.
Cheers now ajh
Hi ajh
I did have 2 more infusions earlier than planned. Not sure when it was as my previous comment was a while ago, but it must have been January as I have dates for the next ones in July. My rheumatologist does 2 a fortnight between so that is twice yours. He did say eventually it would be two once a year.
Sheltielife.
Remind me who your rheumatologist is. He sounds a good guy! Best ajh
He is called Dr Davis. He is based at The Royal Cornwall hospital in Truro and also at the private hospital The Duchy in Truro. Yes he is brilliant just wish my other consultants were as good as him. I had a heart attack a few weeks ago and even though he didn’t have to he came to see me while I was in hospital.
consider Bartonella, a coinfection of Lyme as root cause of both vasculitis , EM, and nerve and vascular damage - testing is done by Galaxy Lab in MD, very hard to diagnose, over 30 species, usually wont show up in testing by other labs, you do not have to have had a tick bite to get this- it is in virtually every insect on the planet now -google work of Dr. Moyazeni
, Rheumotolgist, MD
My vasculitis is rheumatoid vasculitis I have had rheumatoid arthritis for a long time now.
Remember ajh is in the UK not America.
sure I know this thanks, my comment was directed to those diagnosed with vasculitis in general not you specifically and knowledge is power wherever you live- there is lots of informative info at the websites of both Galaxy Labs and Moyazeni has videos online addressing neuor- vascular manifestations of Bartonella: Raynauds, EM, Neuropathy and Vasculitis, Also Moyazeni will do consults by phone with your Doctor wherever you live- good luck and health to everyone
1 Like
Sorry I thought you were answering ajh rather than general.