Bowel involvement

[Wellsie]

Turns out it was my bowel that had become involved.

Just back from 5 night stay in Worcester Royal after a PR bleed and significant lower intestinal pain. It took me 2 days to get them to try the team providing my chemo in Coventry. I was shifted across 3 wards and 4 consultants before they decided to double my dose of pred and give me MST, which did the trick.

Alls well that ends well, but my general impression was you mention you have vasculitis and you immediately see a furrowed and worried brow!

[John_Mills Volunteer]

I am pleased it was all ok for you in the end but I am afraid your story is still too common. I am afraid even the consultants are still learning about Vasculitis. Some of the top consultants with a special interest in Vasculitis are very keen for patient involvement to help them have a better understanding of all the types of Vasculitis. Which is such a good thing.

Unless you have Vasculitis or live with someone who has Vasculitis I am afraid even the doctors and nurses struggle to understand the day to day difficulties of living with Vasculitis. John has had WG for 11 years now... it is not only what the Vasculitis can do to you but the side effects of the drugs and getting the balance right between Vasculitis and the drugs. The fatigue is also a big factor..... The long term story can be so unpredicatable... some people with Vasculitis can come off all drugs quite quickly and some are on them for life. Some people with Vasculitis can be drug free for up to 15 years or so then suffer a massive relapse and have to start all over again either with RTX or the Cylophos and steroid infusions.

Even WG patients can be treated quite differently by different consultants. Also people with Vasculitis can respond differently to the immune suppressants.. So it is a complicated story...but I believe things are improving for the patient with vasculitis and it is becoming more known with the medical profession as a whole. Vasculitis UK are committed to raising awareness with the medical profession besides helping to fund research into better treatments and maybe finding a cure... .... the Route Map for Vasculitis has now gone out to over 100 hospitals in the UK and many GP's....... all requested by patients and consultants. When the new website becomes available in the next few weeks this will also be available to GP's and other medical professionals. So we are getting there...

All the best

Susan

[Wellsie]

Yes.

I did get to see a rheumatologist as well whilst in. We did discuss small vessel vasculitis and blood tests. We agreed what appears to be the standard set for me: FBC, LFT, U&E, CR-P, ESR, and I suggested to double my pred dose, which did the trick and lowered my WBC (despite being in Cyclops, I had an elevated WBC!).