GP & Chest Ciinic give me some answers and advice.Where is the RA advice.

[mattcass]

I am still waiting to be seen by the RA clinic and asked GP to chase this up because there are things i need to know NOW!!, The GP has informed me that the RA medication that I will receive will have to be done intraveniously because of the condition of both lungs ( Heavily Scarred & Fibrosis Build up ) but could not not say what medication or side affects this has to be explained to me by the RA consultant but did say something has to happen now as my lungs have been badly affected the RA for 8 months now. mattcass

[Hidden]

Sorry, this is beyond my realms of experience. Why not ring the BLF helpline?

[dall05]

Hi mattcass, Treating your RA is vital as in my case it was RA that caused the damage to my lungs, (fibrosis and heavy scarring,) I had to go for a rheumatology dose of chemo theropy which involved 6 day visits to the hospital each taking 7 hours of intravenous steroids and cyclo. A little boaring but it had to be done. The only side effect was I felt more tired than usuall. I'm now on 2grams of mycophenolate and 15mg of prednisolone daily which seems to work. keep pestering your GP or the rheumatology department as this generally speeds things up. Good Luck Tony.

[mattcass in reply to dall05]

Hi Tony thank you for this info,can I ask you did you have lung problems before you were diagnosed with RA, Is this why you had the chemo and then on the medication it's just i have had Fibrosis for 7 years and each lung test was better than the test before,at this time do you think i will get the same treatment, I am a bit concerened I have no protection for my RA at all, the only problems with my lungs is when i climb the stairs or do anything out of the ordinary. mattcass

[dall05]

Hi matt, My lung problems came completly out of the blue. I was pretty fit, used to go out cycleing and play tennis but within two weeks of slowly getting more breathless I was addmitted to hospital with suspected double peumonia. It took me 4 months to get out of that place and it was another 2 months before I was told that I had RA in the lungs. It seems that the RA was the cause for my fibrosis and lung damage. It all came together and was the reason why all the treatments did'nt work on ITU. I was a mystery case for the consultants who even now seem unsure which came first, the fibrosis or the RA. The chemo was given to suppress my immune system, (the RA) to stop more damage being done to my lungs. Then the follow up mycophenolate and prednisolone are to keep my immune system suppressed and stable. It seems as though RA can start anywhere in the body which is something I never new before all this started. While I was being treated the nurse told me of a patient who had it in the eyes and had gone blind. I am going through a good period at the moment and can get around without oxygen as long as I take it steady but I know that I'm really quite ill as I have part 2 of lung transplant assessment on the 25th of this month. If you know what the 6 minute walk is all about, then I recently covered 408 metres without oxygen on the part 1 lung transplant assessment, a personal best for me but the consultant still said I was ill enough to be forwarded for part two of the assessment. What a time were having eh' mattcass. Make sure you tell your doctor and consultant that the fibrosis and RA could be linked as it is quite rare and they may miss this. Good luck and if I can be of any more help don't hesitate to contact me. Tony.

[BugsBunny]

I have Interstitial Lung Disease (ILD) caused by RA. I had the RA for 20 years in my joints before I got the lung disease. The RA was being controlled over those years by medication. I am now under a Respiratory Consultant and a Pulmonary Hypertension Consultant. It was the Respiratory Consultant who gave me the low dose chemo therapy and then followed it up with oral mycophenolate. Mattcass, from my experience I would say it is worth your while asking your doctor to refer you to a Respiratory Consultant who specialises in ILD rather than waiting for the RA clinic. I was very frightened when I was first diagnosed but I am still here 5 years later having a fairly good quality of life. Good luck.