I Need Help & Advice.

[mattcass]

I need to hear from anyone who has I.P.F. and Rheumatoid Arthritis 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

[knitter]

Hi mattcass, just to say there has been mention in the press and on TV about trials which electrically stimulate the Vagus Nerve to help ease the symptoms of R A . I guess it's still at the experimental stage though .

[mattcass in reply to knitter]

Thank You Very Much, matt

[knitter]

Just another thought, I had acupuncture which helped very mild problems I had with my shoulder. I know I can't compare that kind of pain with yours, but has acupuncture been suggested...a friend of mine had treatment on the NHS for back pain, but I paid privately for a well recommended practioner.

Best wishes

[mattcass in reply to knitter]

Thanks again knitter I have tried all other options including Accu,One off my friends has said that to check the with the consultants that the original diagnoses are correct you hear all the time people who have I.P.F. in fact don't have it and the same with RA. matt

[Gillsboy]

Hi Mattcass, I was diagnosed with IPF in April 2013 and am on the following medicine

1) Pirfenidone

2) carbocisteine

3) lansoprazole

Pirfenidone is too try and slow the process of scarring.

Cabocisteine is to thin the mucus when coughing ins in the morning

Lansoprazole is to prevent acid reflux which could be the cause of IPF

Hope above helps

[Offcut]

I was Diagnosed in the 80's with RA in both knees and told they will do a knee joint replacement when I cannot walk! Diagnosed with heart condition in the 90's, diagnosed with Fibrosis after 2008 lung failure! Diagnosed 2012 with PH. Besides the usual heart tablets and inhalers it is only the Lansoprazole for the reflux. My lung consultant wants me off my beta blockers and wants me on Calcium Channel blockers but my heart consultant does not! My GP and another consultant have said live with it you are not going to get better!

Sorry not been a lot of help.

Be Well