Looking Forward.: Hi everyone, I see so many... - Vasculitis UK

Vasculitis UK

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Looking Forward.

tisme2 profile image
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Hi everyone, I see so many posts about people suffering with this horrible vasculitis condition and just thought that I would comment about my condition and hope that it will give some hope to all.

I was diagnosed in Oct. 2015 after a previous two years of wondering what the hell was happening to me! So much pain and discomfort, I was being prescribed all sorts of pain relief medication including Ibuprofen, Butran patches, ect.ect. until one day the Doc done a blood test and spotted that my creatinine level was going through the roof and he sent me directly for more tests in hospital. After firstly a lung biopsy that showed those clusters of dead cells, and then an urgent biopsy on the kidneys, and this result was then confirmed as MPA ANCA positive. I was then put on Azathioprine but it made me very sick indeed so that got replaced with MMF with steroids and blood pressure tabs.

The steroids I came off slowly a year ago now without any problems, and I must say I have been in the main pain free for most of this time.

Today, I had my usual appointment with the Nephrologist who has been monitoring my kidney function over the last couple of years my blood tests have stayed steady, now I am at stage 3A CKD so I have asked if I can now start to reduce the MMF and maybe "look forward" to being MMF free at some time. He has now made my next appointment for two months time which will of course be the two year period of being on this medication, and providing my next blood tests are again stable, he agreed to reducing the MMF for me!!

So everyone, don't give up hope of not getting any better than you are, It can and may happen to you too, I really hope that my little story will help anyone that's feeling down and like nothing will change, because it can and I hope it will for you soon.

It may sound silly, but I know now that once I start to reduce the med. I will get a bit anxious and be concerned about going backwards, but hey!

I will let you know how get on!!!

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Keithtim10 profile image
Keithtim10

Hi tisme2 its interesting reading your story and i can relate as i was diagnosed in Nov 2015 with ANCA Vasculitis which after biopsy left me with Stage 3/4 CKD.I initially had a Plasma exchange in St James Leeds who were fantastic with me.I then was put on steroids and had 5 months of Chemo and then Azothipprine until Nov 2016 and my Kidney function dropped in half and the results showed the Vasculitis had returned so i was out of remission.I was put on Rituximab having 2 infusions which brought me back into remission.My Azothiprine was stopped and still is and i am still on steroids albeit down to 10mg daily.My GFR seems stable at 41 at the moment and i had a second batch of Rituximab July this year.Overall i dont feel to bad but have not the energy i used to have but then i am 67 years young so i suppose its to be expected.I do get depressed sometimes thinking about the future but then think positive and talk to people on here and my wife janet who is a rock and i feel better then.You are right it is a horrible illness but research as come a long way and it does give you confidence and for me personally i have to say St James Leeds have dealt with me in a fantastic way and they are brilliant people from the consultants down to the cleaners.Hope you my story as interesting and keep smiling.

tisme2 profile image
tisme2 in reply to Keithtim10

Hi Keithtim10, Sounds like you have had to endure more treatment than myself as I didn't have a plasma exchange, Chemo or Rituximab! I'm from the South Wales area and to be blunt the doctors and rheumatologists around here had never before had to treat a patient with vasculitis!. My GFR is now at 50 and steady although in the early year I too was CKD 3/4 and GFR of 39 but its improved. Agree the wives or husbands that have a partner with this should be given a medal for the support and reassurance they provide us sickies! Its good to read about your progress too. I am slightly older than yourself and didn't actually deteriorate until I stopped work so I consider myself very lucky compared to others. All the best to you and stay stress free because that's trigger!

karens62.

Great to read your story too I am so happy for you that things are improving and the meds are being reduced gradually but successfully. Again, do your best to keep stress free and laugh at life!

Keithtim10 profile image
Keithtim10 in reply to tisme2

thanks tisme for your kind thoughts and strangely enough i have a friend who lives in Glamorgan who suffers with vasculitis who has had issues with medication but she seems to be doing ok.Stay strong and keep in touch best wishes

karens62 profile image
karens62

Hi all, I too have a similar story but with EGPA involving heart and lung failure - pretty dire! After two years of gradually tapering pred and staying on MMF, I went back to work part time. It's been 12 years and I started tapering MMF last year. I'm almost down to 1/2 the dose I started with. My rheum is very conservative with super slow tapering but it's worked. I've never flared and I feel better now than any time earlier. So there's hope and the real possibility of improvement.

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