Early days - my story so far

My first ever blog! I was diagnosed with micro polyangiitis vasculitis in early April at the age of 56. Having now joined the support group it has made me appreciate how fortunate I am. The diagnosis was quick enough to ensure my kidneys did not take a serious bashing and they seem to be making some recovery. The response to treatment (Pred. and Cyclophosphamide)seems to be going OK but the side effects (lack of sleep, night sweats leg cramps, mouth ulcers, bouts of tiredness etc.) are not a barrel of laughs. However compared to how I felt before the treatment it is a fair trade at the moment. How things progress from here, is I appreciate uncertain but I prefer to focus on the here and now rather than worrying about what might happen. I’ll cross those bridges when I come to them.

It does concern me that not everyone out there seems to be getting good aftercare, simply due to where they live and the level of knowledge/expertise in their area. It seems the NHS needs to be more joined up in dealing with vasculitis. I am lucky that I am being treated at the Queen Elizabeth Hospital, Birmingham which is a centre of expertise on vasculitis. I signed up for three clinical trials on vasculitis which has brought me under the care of the Welcome Trust (research centre) at the hospital. All I have to do is agree to provide regular additional blood specimens and for my DNA and biopsy tissue samples to be used in the research which will eventually be published. One of the things they are looking at (PEXIVAS trial) is the benefits of the alternative plasma exchange treatment with a view to being able to reduce the initial high doses of Pred. In return I am getting very closely monitored treatment by the research team. My consultant Lorraine Harper has contributed to a number a papers on vasculitis over the years. I suppose there will come a time when I will be transferred to the care of my GP but I’m hoping the QE team will still remain there for support.

3 Replies

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  • Hi Chris

    I too have recently joined this support group, it is a wealth of knowledge and it is reassuring to know that other people are having similar experiences.

    I travel from N. Ireland to Addenbrookes for treatment for WG. The Drs in N. Ireland had limited knowledge of vasculitis.

    I read your profile and I think you hit the nail on the head when you talk about the immune system being too good, then maybe it reacts by going into overdrive. Thats exactly what I have always thought about myself. Before being diagnosed, I had a very healthy lifestyle, working, excercising, rarely unwell and then I end up with an autoimmune disorder!! There has to be a connection somewhere, but none of my Drs have ever been interested in my lifestyle before wegeners. When I see my GP he keeps telling me to eat fresh fruit and veg, I told him, I ate too much fresh fruit, veg and water, thats how I ended up with an auto immnne disorder! He hasnt a clue about my condition, which is very frustrating, thats another reason why its good to be a member of this group.

  • Hi Kate,

    Sorry for the late reply. I'm glad you find the support group useful as I do too. Someone else from Worcestershire read my blog and has been very unhappy with her treatment and consultants at the hospital she attends (she has had WG for 2 years). She is now transferring to the QE which shows how the support group helps. You make one heck of a journey for your treatment but hopefully Addenbrooks is on par with the QE. It's a real shame your GP is so clueless. I think he has a professional duty to learn about your condition. It's not that hard these days. I'm a layman and it hasn't taken me that long to get up to learn a lot about this condition with a bit of internet research.

    Good luck with the on-going treatment.

    Cheers

    Chris

  • Chris, it's really good to hear a really positive story. Susan and I get a distorted view because we get to hear about the cases that don't go well, where diagnosis is delayed and/or treatment and maintenance is inadequate - or in some cases non-existent! Do you mean you were diagnosed in April this year or last?

    I am nearing the end of preparing the Vasculitis UK's response to the UK Government's consultation on future policy for dealing with rare diseases. We all know there are centres in the UK for treating vasculitis that are World Class, but sadly there are a few black spots. One of the proposals is that there should be a number of centres of excellence around the country, where possible working on a "shared care" basis with local hospitals, to save patients having to travel long distances. As I'm sure you will appreciate, this "hub & spoke" system (if properly applied) would give benefits all round and should raise the standards of diagnosis and treatment across the board. This of course applies to most other rare diseases.

    I am including a few brief anonymised case studies in the submission. Some to show where things went seriously wrong due to late diagnosis or inappropriate treatment but some to show how the outcome can be so much better when vasculitis is diagnosed early and treated properly. I think your experience would be very suitable this latter category - if you don't mind.

    Regarding being discharged entirely to the sole care of your GP: I think that most of the more experienced specialists in vasculitis would consider that in view of the relapsing nature of some types of vasculitis, such as MPA, WG, you should always remain under the supervision of the vasculitis clinic., With the best will in world, your GP cannot have the experience to recognise if the disease is becoming active again. However carefully coordinated shared care between vasculitis clinic and GP, as described above, may save you a lot of bother and be cost-effective for the NHS.

    John

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