i have just been diagnosed with RA, along with Lung F... - NRAS

NRAS

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i have just been diagnosed with RA, along with Lung Fibrosive for 6 Years the RA medication can damage my lungs and have been rejected.

mattcass profile image
11 Replies

Has anyone been in this position that the chest consultant has advised that any the RA drugs recommended by thr RA consultant have been rejected because of the serious illness that comes with each one.

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mattcass
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11 Replies
earthwitch profile image
earthwitch

Is that just the DMARDs, or it is the anti-tnfs as well? You might want to check if anti-tnfs are OK.

mattcass profile image
mattcass in reply toearthwitch

Thanks, the only thing the lung consultant is giving me is prednisalone & strong P/Killers any other recomended RA treatments are rejected till they all get round the table but nobody is telling me the worst senerio RA will have without treatment now other than the normal flare ups.

allanah profile image
allanah

Have the two professionals actually communicated with each other to get u the best care they can! If not get in touch with the Rheumy secretary, and get them to discuss your case. If they have discussed your case then insist on a joint plan of care with you at the centre of the plan. U need to know what is available rather than what is not. Good luck xxxx

mattcass profile image
mattcass

Thanks, This is the problem at the moment they are consulting their Senior Consultants, as i said earthwitch the treatment is Prednisalone & P/Killers nothing for the RA, is there any other symptoms other than the normal flare ups I have to look forward to.

oldtimer profile image
oldtimer

From my reading about azothiaprine (which I'm now on as a "last resort" having gone through all the other DMARDs), this doesn't affect the lungs. So far, it's almost controlling things, and I have the option of an increased dose in the future as I'm working up to the maximum.

It does (of course) have other side effects, like the nausea and the risk of lymphoma, but not, as far as I know, lung damage.

So that is, at least one drug that might be possible. But I thought it was the RA auto-immune process itself that damages the lungs anyway? Anyone else know? I'll have a look and post again if I find anything else more positive.

But I agree that the consultants should be getting together to make you a plan for the future.

mattcass profile image
mattcass in reply tooldtimer

Thank You for this i will mention Azothiaprine to the RA consult.will also check out patient, Mattcass

mattcass profile image
mattcass in reply tooldtimer

Hi There i dont want to be cheeky but are you in the age bracket that you could or would be working, this is the thing i am left in the dark about will i still be able to go back to work with the both RA/Ruma Fibrosis.

oldtimer profile image
oldtimer

And you might want to look at

patient.co.uk/doctor/Diseas...

yourself to see what they are talking about, so you can take your own decisions.

Gilliam profile image
Gilliam

Hi there - Just a quick note. I have had RA since the age of 7 (now 42) and only taking pred (10mg) and mycaphenalate (immuno-suppresant) as the Drs believe that an anti-tnf treatment that I took about 7years ago caused complications with my lungs, requiring me to now be on long term oxygen therapy. Unbeknown to me my lungs were already damaged due to the RA (shortness of breath and persistant cough) but I never had any investigations even after raising it with my rheumatologist. I do have flare-ups of the RA but there doesn't seem to be an alternative although the steroids and immuno-suppresants help. I hope this helps.

Hi Mattcass

I hope that between your rheumatologist and chest consultant they are able to find a suitable RA medication for you. In the meantime there is strong evidence that glucocorticoids (prednisone and prednisolone) are able to reduce joint destruction, and will help to control the inflammation casued by the RA so hopefully they will help you to feel a bit better. We have an article on the use of steroids in RA which you might find useful at this time: nras.org.uk/about_rheumatoi...

Kind regards

Sarah Kate

NRAS

mattcass profile image
mattcass in reply to

Sarah Kate thank you, i get the immpression from RA consult he wants to try his medication a.s.a.p. for RA but Lung Consult having non of it.Mattcass

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