GP softens the blow for me.

[mattcass]

Hi There, I have my 1st visit to the rheumy in the morning but he has told me that reading in between the e-mails the Ra treatment will be given intraveniously but any side afffects that may cause probs for my lungs and this stops, and the next option which has been discussed at a higher level would be to advice me about a transplant,this was never mentioned to me in January I take it the last CT scan showed even more heavy scarring and build up of Fibrosis.Im glad he told me it gave me a chance to discuss it with Fran and my son rather than they hear it 1st hand tomorrow, As Fran say they know best.Matt

[Hidden]

Oh, not what you'd been hoping to hear, but as you say, you are now forewarned going in there tomorrow. I'll be thinking of you and yours tomorrow. Take care. x x

[dall05]

Hi Mattcass, I have Pulmonary Fibroris caused by Rheumatoid Arthritis and have had the intravenous treatment you may be going for soon.

It involved 6 days with roughly 2 week intervals, of 7 hours of intravenous medicines. 3 hours of Solumedrone followed by 4 hours of cyclophosphamide.

The only side effects that I personally noticed was increased tiredness but other than that I was fine.

Rheumatology then put me on a daily dose of Azathioprine but I had an allergic reaction to that and was then put on Mycophenolate which is an immune suppressant.

Since being treated by rheumatology I have noticed a definate Improvement in what I am able to do so hopefully your course of treatment will benifit you.

I have recently been through the process of getting on the lung transplant list so I now have to carry my phone at all times. This gives me hope that I may return to some kind of normal life in the future.

Stay positive Mattcase and you'll be fine.

Tony.

[mattcass in reply to dall05]

Hi Tony thank you for your reply,the only difference is i had the PF for 6 years if it had been the the other way round it would have been a better option for me medication wise,If I can stay away from lung infections which in my case would be fatal for me and the lung probs i have is ireversable, i am also allergic to Azathioprine so the they are looking at a mild RA med that wont affect or damage my lungs further.will keep in touch thanks again, Mattcass

[Hidden]

Hope everything goes well tomorrow for you. Glad you had chance to talk to Fran and your son. Good Luck TAD xx