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Living with Wagners

Posted , 2 users are following.

maddie26625
maddie26625

Hi

We could all wake up some mornings and wonder why? Why me? Why this disease? Why aren't the drugs working? There really are no simple answers to any of these questions. We just have to trust the wonderful professionals who look after us.

I'm just waiting to find out my next steps as Azathioprine nor Rituximab appear to be working for me. I feel fatigued, joint pain, back ache, oh the list could go on and on. I'm sure if I dwell on it too long depression could be added to my list.

However, I don't know about you guys, but I woke up this morning, thought about my wonderful family and all of the positives in my life and you know what, this illness doesn't feel so bad. I also thought about all of the troubles in the world, this condition isn't too bad after all. It should be able to be controlled once we find the drug for me and I will have a long, happy, healthy life.

Let's keep positive people. Have a great day.

1 like, 5 replies

5 Replies

  • dave170448
    dave170448 maddie26625

    Posted

    Hi Maddie

    ?How right you are!!! I've "coped" (not very well at all some days) with this dreadful disease for nearly 20 days and have been told three times that "this is very serious, I'm afraid". Still, we soldier on. I found Retuximab really good on the first and second infusions - felt like a new man and 20 years younger for a week or so. Last couple of infusions have left me feeling worse than before the infusion. I'm glad Azathioprine? is working for you - I couldnt get on with it. Do you have a good Rheumi?

    Best

    ?Dave

    • maddie26625
      maddie26625 dave170448

      Posted

      Hi Dave. Sadly the Azi didn't work. Not got a Rhumi yet. Only been diagnosed since January.

    • dave170448
      dave170448 maddie26625

      Posted

      Ah

      Where are you Maddie. If you have Vasculitis you MUST find a Rheumi experienced in the condition.

    • maddie26625
      maddie26625 dave170448

      Posted

      Hi. I am in Northampton. Dr Jayne in Addenbrooks is my consultant and he hasn't felt the need for that yet. Just trying to get me in remission. My main issue is my major organ involvement with lungs, kidneys and upper respiratory tract.

    • dave170448
      dave170448 maddie26625

      Posted

      Maddie

      If you are attending the Vasculitis Clinic at Addenbrooks and seeing David Jayne then you are in the hands of the world's leading expert on Wegeners. I have just transferred away from Addenbrooks as the 3 hour journey, overnight stays etc was just too much for me. Wish you well

      Dave

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