Diagnosed with vasculitic lesions in December, in addition to lupus. DVT & MI within the last 4 weeks, & now awaiting kidney biopsy.

[roobarb]

It's difficult to take all that's happened recently. So support & advice would be very gratefully received.

I thought I basically had Lupus, & have been searching for the right medication for sometime. But it seems as if something more is going on. I was told the DVT was more likely to be inflammatory in origin. Although haven't spoken to rheumy or nephrologist since the MI & stent fitting last week, so don't know if they feel the same about this. The cardiologist said it was a possibility. But I felt that he was more concerned with finding out the problem & fixing it, than why it happened.

I am wondering whether I should try to speak to my rheumy to get some answers?

Also, is there a Facebook page for Vasculitis UK, & is it a closed one that I need to request to join?

Many thanks in advance & best wishes to all. X

[Jann]

It is always worth following up with your consultants. Good luck with finding the right treatment.

The Facebook group is not closed so others can see your entries. This group is used for more sensitive information.

[roobarb in reply to Jann]

Thanks Jann. X

[RichardE Volunteer]

Hi Roobarb. Your case is very similar to mine. I also had an MI that I suspect was triggered by some sort of DVT like event caused by my Vasculitis. It was Rheumatologists who became very interested in me at this point and were key players in chasing down a proper diagnosis and treating me.

So yes, I'd definitely recommend that you talk to your Rheumatolgoist about this.

Lupus and Vasculitis can cross over and one can mimic the other. My diagnosis is Hypocomplementemic Urticarial Vasculitis which shares many of the same blood results and symptoms as Lupus. Equally Lupus can have Vasculitis as a secondary involvement. Hopefully your Rheumatologist will be familiar with both Lupus and Vasculitis and have some insight into your own condition.

But if you don't get any joy out of your existing Rheumy do get back in touch. Depending on where you live we may be able to recommend a consultant at a centre of excellence for Vasculitis who might be better able to help.

Oh and as Jann says, we have an open Facebook group here :

facebook.com/#!/groups/1635...

You should only have to wait a short time for one of our admins to approve you before you can post.

And finally, in case you've not seen it, here's our website with lots more information :

vasculitis.org.uk/

All the best,

Richard.

[roobarb in reply to RichardE]

Hello again Richard, & thanks for your reply. When I did a quick search on this site I was able to read some of your previous posts, & thought your story sounded similar to mine.

It is good to read on your profile, that you are now in drug controlled remission. I hope this will be the case for me soon as well. Once my kidney biopsy is done, & the consultants can decide which meds are best.

I have confidence in my rheumy & nephrologist, but would be interested to know about the centres of excellence you mention. Are they on the vasculitis UK website?

My only concern at present is that because of the MI, the biospy has to be delayed by 6 weeks. In the interim I have been left to self medicate on prednisolone for lupus/vasculitis symptoms. But I think I will speak to my GP, & ask her opinion. In the past she has fast tracked me to see the rheumy when there have been problems.

I will check out the facebook page now. Many thanks again for your support, & have a good bank holiday. X

[RichardE Volunteer]

I agree, it might be an idea to have a chat with your GP and see what they think about a fast referral to your Rheumy. As they've already indicated, it's probably best not to rush the biopsy for now and it might also be that they want your immune system to handle any post MI and stenting issues before they start any suppression. But these would be interesting questions to ask.

For me, I think the full diagnosis came 8-10 weeks after my MI, but they'd decided it was some form of Vasculitis after about 6 or so weeks and started me on a big dose of Pred and Mycophenolate at that point. They definitely didn't want to go down the normal route of Cyclophosphamide though due to the heart issue. So you may find this is the same in your case. Another question to ask I'd suggest.

Regarding the centres of excellence. I can only find the occasional refenece to them on our website, so I'll bring this up amongst our Trustees and see what we might do to promote them.

In the meantime I know we have contacts with consultants who specialise in Vasculitis at Addenbrookes in Cambridge, Hammersmith in London, Manchester, Birmingham, Ipswich and Norwich, and Aberdeen too. If you'd like more information about a referral to a specialist then drop me an email at [e-mail] and let me know where you live. I'll find out where the nearest specialist is to you and let you know.

Shout if there's anything else I can help with.

All the best,

Richard.

[roobarb in reply to RichardE]

I live in the North West of England. I know we have prominent lupus specialists at Manchester with Prof Bruce. Also in North Wales with Yasmine Ahmed. I wonder if they might have an interest in vasculitis too, due to the common cross over of these auto-immune conditions.

That's an interesting point you raise about the cyclophosamide, Richard. The penny hadn't yet dropped that treatment option might be different post MI. Do you mind me asking which type of mycophenolate you are on? I had a bad reaction to the generic version, but have been told there is less chance of side effects with mycophenolate acid version. If my memory serves me correctly, I think it's known as Mycophenolate mofetil.

Roobarb. X

[RichardE Volunteer in reply to roobarb]

Hi Roobarb,

Sorry for the delay, I've been away and busy with work.

Manchester might be a good bet for you. We know Dr Mike Venning there as a Renal Vasculitis specialist. Not sure about Rheumatology though.

Prof Bruce does appear to be very much Lupus but I see that he has had input on a recent prominent Vasculitis study. So as you say, given the similarities between Lupus and some Vasculitides he might be a good choice.

Regarding Mycophenolate, I seem to be lucky in that I can tolerate any type. I get the occasional touch of diarrhea but nothing serious.

I appear to have a generic Mycophenolate Mofetil at the moment. It varies depending on what my chemist gets hold of. As I understand it, even the generic type is very expensive and they only get it in on special order.

Hope this all helps,

Richard.

[roobarb in reply to RichardE]

Yes, very helpful. Thanks again Richard, & best wishes. X