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Thread: Arrrgggg! Its got me..... or is it I got it?

  1. #21
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    Update.

    Saw Rhummy today. 5 months since diagnosis. It seems bloods are, and have always been fine (except original ANCA) and that they have no markers to measure against except what I can tell them. I do a spreadsheet to give them when I go which summarises my symptoms on each visit and how they have /have not improved. It saves time (& their wrist) and means I don’t miss something out and they can’t say they did not know!

    They have ordered another CT scan of the sinuses to see if that helps. We discussed my trip to ENT the other month and agreed it was a waste of time as I saw a locum who put a light up my nose, said it was all clear and even discharged me. Getting new appointment with WG knowledgeable ENT bloke.

    Decided that the Methotrexate is not working but they want to try Meth. injections first before going onto the harder drugs, so setting up lessons for me ( I feel sorry for the Orange if they still teach with them).

    Added calcium and something else (well I am a man!) to my prescription list as pred now at 30mg.

    Agreed that so long as I feel I can manage, jogging on the treadmill is Ok and maybe helping beginner groups with my running club would be fine too. I know that the Pred does increase the risk of injury (Sangye) but it is my mind I have more concerns about. To be able to feel part of something again will help me greatly as I am becoming more and more quiet and withdrawn. Might help with the weight gain .

    Clarified lines of communication for help.

    Still the only WG patient diagnosed in the Portsmouth area this year.

    Just got to worry about my truck driving licence renewal medical next week, and hope that WG does not make a difference. Consultant does not see why there should be but, hey ho, nothing is to be taken for granted with goverment departments.

    Got to go.

    Bought a whole hot cooked chicken . Sitting looking at it drooling (me not the chicken) – pred side effect?

    Damm it coffeelover how can I be attracted to Tweety - its still sooooooooo cute!!!!!

  2. #22
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    Quote Originally Posted by Hammy8241 View Post
    Just got to worry about my truck driving licence renewal medical next week, and hope that WG does not make a difference. Consultant does not see why there should be but, hey ho, nothing is to be taken for granted with goverment departments.
    I asked the DVLC about this when I first had Wegener's and a renal transplant, but they were not interested, but that was for the regular car licence.

  3. #23
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    Hammy, it sounds like things are moving along. I'm in the same boat as far as no blood markers, and even my Wegs specialist has had to get used to that. They normally give symptoms a lot of weight, but with people like us they have to do it more.

    If you have to do mtx shots, the needle is very tiny like an insulin shot. Seriously, you can barely feel it. I had to learn to inject myself into the abdomen with Lovenox-- bigger needle, burning drug-- and really surprised myself at how much I freaked out. In addition to a smaller needle and a painless drug, injecting into the thigh as opposed to the abdomen is much easier-- less anxiety.

    As far as exercise, you'll find a happy medium, I'm sure. I understand the psychological need. Exercise was the main way I worked out stress my whole life and being 100% unable to do any of it for several years has been tough. I've learned other ways to cope, but really can't wait to do it again. Have a good time.

  4. #24
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    Well guys and girls, two pieces of news.

    1. I finally received back my new driving licence last week (short of staff it seems!) so that’s a relief. Could of done with though last week in Italy as I was going to hire a car for a day or two but it did not matter too much as got lifts (cheaper too)

    and secondly, just back from ENT. Nice guy, gave me plenty of time to ask questions and happy to listen to my ramblings. All good news. No sign of WG infection in the nose, throat or sinuses. Hearing is back to acceptable levels (given age!!). Had a pressure test which did show blockage in both ears. but consultant could not identify any reason nor why I kept walking into doors. Maybe its because I was always being told I was 'as thick as a short plank' or perhaps its just the extra width I now carry!

    I have really noticed the difference since I started the mtx injections.

    Just hope it continues and the WG bug does not read this and doesn’t throw an couple of curved balls my way
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  5. #25
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    Great news Hammy DEE x

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    I'm glad the Wegs dog is behaving, Hammy! I don't think he can read, so you're probably safe.

  7. #27
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    That is wonderful news, Hammy! Keep doing what you're doing.

  8. #28
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    Quote Originally Posted by Hammy8241 View Post
    but consultant could not identify any reason nor why I kept walking into doors.
    Should have gone to SpecSavers!

    Congratulations Hammy, it must have been the trip to Italy.... how was the Pope?

  9. #29
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    Happy news Hammy
    Jolanta

  10. #30
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    Really had to dig this thread out - wow what a lot of new members we have had in the past year!

    Anyway update.

    Today went to Rhuemy .

    All clear from ENT visit last month.

    Still had various mild symptoms and had not been able to sustain any significant pred reduction.


    Key points/Results:

    Increased Mtx injection from 20 to 25mg

    Booster armful of steroid IV

    Re-test anca blood markers (just for fun as normal bloods don't much)

    Recommending me for Rituximab infusions asap (Not approved for WG yet in UK)

    Chest x-ray

    lung function tests

    Also:

    Not impressed with the new name and won't be using it.

    Not enough change to pay for the car park!

    Thats all folks.
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



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