My first Rheumy visit at last,

Hi All, I have the Rheumy this thursday after waiting 4 months but at this time it could be a waste of time, during the last two weeks i got a bad side afffects from the morphine based p/killers Ive ended up with an chest infection or virus still waiting on results which left me with very low oxygen level and i cannot walk two feet without help and it will take weeks or even longer for any improvement,the only meds i am on now is a high level of Steriods 80mgs a day to keep down the flare ups and help the Fibrosis, It looks like the RA meds will have to wait, its soul destroying.Matt

10 Replies

  • That sounds so miserable, I feel for you. But at least getting to see the rheumy will be a step towards something, and they may have ideas about what could be tried. Hope it goes well, and they at least listen to you as it sounds like you have lots of medical problems that need attention. good luck. Polly

  • Hi Polly thank you for your kind words, Maybe because its all happening to fast yet to think me and Fran walked 8 mile everyday and that was after my work 4 months ago seems a long time ago now and this is just the start.Matt

  • Don't give up hope. I know your lung problems makes things very complicated, but there are some remarkable medicines out there. When my RA first hit me a few years ago I went from working full time, rushing about, etc etc to virtually bedridden. I really thought that was the end of life as I knew it. But the drugs worked for me (eventually) and I'm now nearly normal again. Polly

  • Sounds like at the moment you are in a place where you are concentrating on walking two feet, trying to get air into your lungs ...... it must be very difficult to imagine one Rheumy appointment leading to anything positive. But it might well be an important part of the jigsaw even if you have to wait before starting meds.

    Waiting never sounds good I know but I so hope that your chest problems are resolved quite soon ...... and then you'll be in the mood to go get that RA.

    All the very best to you, hope to hear more from you on here as soon as things start looking up if not before.

    Luce xx

  • Hi Luce thank you for your reply,as i said to Polly a lot of it has happened very quickly its taken a lot to take in, its very hard to think positive at this stage.Matt

  • Sounds like you are having terrible problems at the moment. Hopefully your rheumy appointment will be good.At least it should help with the ra thing at least.

    One step at a time sort of thing. Slowly slowly you will improve.

    I will be sending you positive thoughts your way take care xx

  • Hi Miss, Thank you for your kind words but trying to think positive just now is the hard part for me, But as we all agree this is a great help and support page as well as the BLF page.Matt

  • Poor you, sounds dreadful. Forgive me for forgetting but have you been diagnosed with RA by a rheumy already and are you just waiting until your lungs are well enough to take the RA drugs? What a nightmare it all sounds wishing you much better days to come. Tilda x

  • Hi Tilda thank you, i was diagnosed privately in Jan this year and its taken 4 months to see the NHS Rheumy, my GP says the RA meds will be given intraveniously either at home or at the local hospital but will be put on hold till my Lungs improve by at least 50% or better so its a waiting game at the moment,Matt

  • Thanks for explaining Mattcass - I remember your story now. Take care. Tilda x

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