Now I'm Confused.

[mattcass]

Last September when i questioned when did my Pulmonary Fibrosis become Idiopathic only to be told don't know, was it when RA attacked my Lungs and took away more than half my Lung space in Jan 2013 don't know, Then I was told I could have all the RA treatments if I had RA before I had Pulmonary Fibrosis. It's got to the stage RA is dictating my life and is becoming unbearable and there must be some treatment even if it affects my Lungs I will try anything,Matt

[Hidden]

Hello

I heard somewhere that DMARD and -TNF can effect the lungs as a contraindication. If you feel you are not getting a proper reply you need to take further advice. if you are having problems

If you want to check before the GP go onto the NHS Choices pages and you may get succor there.

I am not a medic so your GP or RA specialist are the ones to ask

BOB

[Someonesmother]

Hi Matt

So sorry you are being stuffed around so much it is incredibly frustrating and makes you want to scream. Am I reading correctly that the Drs are playing a chicken and egg game and saying which came first and if the RA came first you can have treatment for RAif not then you can't? That would seem a very harsh and inhuman response if they then decide the IPF came first and deny you any treatment. what happened to 'first do no harm'? I so hope that you get answers and some treatment that relieves your pain and I am sure that we are all here if you need to vent. Very supportive and lovely people in this community. Best wishes

[mattcass in reply to Someonesmother]

Thank You, All i am trying to say is at the beginning the meds I am on now for my RA was a no no as it could and would do damage to my Lungs so they are changing the goalposts to suit them. I have been reading RA is not just about swollen and twisted limbs there are people out there who suffered from start to finish with flare ups and inflammation only it looks like I am heading the same way I don't have anything signs other than blemishes and swollen joints, mattcass

[Someonesmother in reply to mattcass]

Hi Matt

That is what I was trying to say, you put it so much more succinctly! Do you think it is because they have no idea and are making it up as they go along? I find with my weirdo reactions and other things that is what the have to do as they have never come across some of the reactions I have and the way my body is responding to the disease. I am one of those who has been in flare and never really stopped, I just have variations on it. My rheumy told me at the beginning that it can have an impact on major organs heart lungs eyes etc. I so hope there are some answers for you soon. It is like swimming in treacle trying find your way through the maze. All the best

[Hidden]

Hi mattcass,

sorry to hear that you are having such a rough time of things. If you are unhappy with the way that you have been diagnosed or the treatment that you are getting you can always ask to be referred for a second opinion. I have put a link below for yo to the section on the NHS website where it tells you how to do this:

nhs.uk/chq/Pages/910.aspx?C...

I hope you get your treatment sorted soon whatever you decide.

Regards

Beverley