I Need Help & Advice.: I need to hear from anyone who... - NRAS

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I Need Help & Advice.

mattcass
mattcass
12 Replies

I need to hear from anyone who has Rheumatoid Arthritis & I.P.F. Idiopathic Pulmonary Fibrosis so i can compare medication & treatments, i have a consultation next Thursday and i am going in with all guns blazing and with Fran asking the questions it could be interesting, I have got to the stage where I am willing to risk damage to my Lungs as my life with RA is unbearable so any feedback will be very much appreciated,mattcass

12 Replies
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earthwitch

Only thing I'd suggest is to really question the doctor about why they think its idiopathic, and not a result of either inflammatory disease or medications. Not sure if that would impact on the way they treat it. Apical pulmonary fibrosis can be an extraarticular manifestation of ankylosing spondylitis, (I'm not sure about RA), so another thing to ask would be whether they are sure you have RA and not one of the spondyloarthopathies (AS, PsA, etc),because if you did have spondy, then the DMARDs used for RA (that don't work as well for spondy) may not be keeping the disease under good enough control. If the IPF is the result of RA, then again, ask whether its been caused because your RA isn't under good enough control and what they plan to do about that. Good luck. I'm sure you will get answers with Fran by your side!

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Kikideelili

Sorry mattcass I can't help as I have RA and not ipf. Hope your appointment goes well and you get some answers.

Kikideelili x

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Twitchytoes

Mattcass I agree with Earthwitch - I think it's worth querying the term "idiopathic" perhaps? Good luck with your appointment.

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Marm

I have ra and pulmonary fibrosis (not sure if it's idiopathic) and tried various medications, only diagnosed in April 2014. Apparently you can't have mtx if you have a lung problem, also some of the other meds. In November I had a Rituximab Infusion and this has made a real difference to my mobility. I can use my hands almost normally so that's a great plus. I still get some discomfort, not really pain, for which I take Solpadol which keeps it under control. My rheumatologist said he was running out of ideas so hopefully this treatment will last. Good luck with your Appt.

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poemsgalore1

I don't have I.P.F. but I do have Bronchiectasis with Pseudomonas colonies. I'm on MTX injections (20ml) Leflunomide (20mg) and reducing prednisolone for Rheumatoid Vasculitis as well as RA.

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miss

Hi Matt truly sorry your having such a hard time of it Have you tried contacting NRAS. As they have doctors that i personally have used, Due to a Hep B status. If it had not been for them i too would be struggling. Hope this is some help to you.xxx

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Ailsa-NRAS
Ailsa-NRASAdministrator

Dear Mattcass

Sorry to hear of your situation. It might be helpful/useful for you to read the following article on the NRAS website: nras.org.uk/the-effects-of-...

Please do ring the helpline team after your appt. if we can help further.

Good luck

Ailsa, NRAS CEO

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Caza

Hi matt, can't offer advice but do hope you get some answers soon x

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Hidden
Hidden

Matt, I think that what I hear you asking is if you should trust the judgement of your doctor when she/he made the call of putting you on RA medicines...or your anticipation that this is the route that your doctor will go... I don't think that anyone on this forum or any public publications can give you that answer. You may need a second and third opinion of doctors that know everything and more about your case... then if you want to share your findings with all of us, we will be most amused, will pray like crazy for you and will give you our best wishes that you will feel okay and continue to improve. I sure appreciate your situation, I have one of my own scary ones going on just now as well. Frightening ordeal so far.

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mattcass
mattcass
in reply to Hidden

Yikes all i am saying is the Gp, Respiratory, rheumatology consultants keep changing the goal posts with what medication is good for me and what is not. when i know none of it's working just now believe me, All i am saying it would be good to go into a consultation with an option for them if this is possible there a lot of drugs out there we don't get an option to try because of costs ect. and if i find out anything i will share it with others but not to keep you and others amused.mattcass

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bencar

Hi Matt, Don't know if this is of any help to you, then you can decide. My husband suffers from IPF, he has been on a research programme for this and has been given medication 'Pirfenidone 267mg'. Apparently he has been told the medication is new, it depends how aadvanced your IPF is whether they will prescribe it for you, apparently if IPF is too advanced it won't work. He has now been on this drug for 12 months, the drug does not improve the complaint but is said to keep it at bay. I feel so much for you that you are in such dire pain, I know the lung complaint is not painful just uncomfortable with the breathlessness. Maybe you could enquire if this medication could be of use to you, it may enable you to have the biologics you need and deserve, without too much of a problem for your lungs. I don't know if this is of any help to you, just hoping it maybe.

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mattcass
mattcass
in reply to bencar

bencar thank you. My Rheumy would put me on Biological meds in a minute but it's the chest docs who have put up a brick wall on this well it's my decision now so i will let you all know how it goes.matt

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