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Thread: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropathy.

  1. #11
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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Hi Gary and welcome,

    I think the long term, higher-than-usual dose, of Pred could be due to the fact that the Drs had no other ideas of how to control the pseudo tumour?

    Long term steroid use usually effects the eyes in the form of glaucoma or cataracts. You say your optic nerve is ok, so I presume no glaucoma. Cataracts damage the lens, is this what is wrong with your lens, or other damage?

    Where exactly is this pseudo tumour?

    I have been a member of this forum for many years and we have had MANY Wegener's patients from all over the world pass through over the years, but I don't recall any pseudo tumours. If your lens damage is not cataracts, then I would be concerned that along with the unusual pseudo tumour, you may have something going on other than GPA/Wegener's.
    From past experience, it seems too easy for Drs to blame a rare, complicated illness, such as Wegener's, for a whole host of illnesses, before they rule out other possibilities. I.e. if you had turned up at hospital with only the pseudo tumour, would they have diagnosed Wegener's, or would they have a different diagnosis?

    I am also treated at Addenbrooke's (I arranged a transfer from Bradford, via my GP) and would recommend them. The problem at the moment (with COVID) is getting access to any kind of appointments, never mind a transfer/referral. Although Bath have experience of dealing with Wegener's, do their other specialists. I have seen ENT, lung specialists and eye specialists that do specialise in Wegener's at Addenbrooke's.

    There's a good chance that Bath do know what they are doing and if unsure, they're likely to be in touch with Prof. Jayne, so try not to worry. But the one thing you must do is make sure that they have a plan for you. I think US hospitals tend to be proactive in telling patients what they are doing, what they plan to do, giving many details of tests and investigations. Sometimes in the UK it seems as though they expect you to just accept that you are "in the best hands", don't worry, take your meds and we'll update you when necessary.


    Keep us all up to date with your progress and I hope everything settles down.
    Diagnosed April 1995

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  3. #12
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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Hello Gary,

    Sorry to read about your plight but welcome to this Forum and the best source of information and help!

    Freaky has beaten me too it (not for the first time!) and given you all the info I could possibly pass on. We are both fortunate to have come under the wing of Dr Jayne and count our lucky stars. I agree with Richard with regards to Plasma exchange therapy. It was given to me for 3 consecutive days on my first admission to Addenbrookes after DX back in 2008 and set me on the road to recovery.

    None of us walk the same road with regards to this illness so its a battle to find out what works for you. We are fortunate to have RTX in our armoury when you think about how the treatment regime was not so many years ago.

    Wishing you the very best.

  4. Likes richard052018, Alysia, Masha, Pete, mishb, annekat liked this post
  5. #13
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    Default Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Hi Anne,
    Thanks for your message.Its good to hear from so many people.
    i hope life is treating you kinder now and you managed to reduce your meds right down.
    Will keep you informed if anything drastically changes.
    Gary

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