Lung issues and RA

jenzie06

So I started Baricitinib in Oct 2017 after waiting a year off meds for things to be NICE approved. Almost straight away I had repeated pneumonia and chest infections. I ended up being referred to respiratory and having various tests inc a lung function. This was normal apart from a low gas diffusion result.

After reacting more and more to Baricitnib and having more lung infections I came off it in March.

I've just had another lung function test and my gas exchange is well down on what it should be for my age. The causes could be an undiagnosed cardiac problem, RA damage, RA drug damage or scar tissue from the pneumonia.

The problem I've got is that I need my rheumatologist to speak to my respiratory consultant. I'm currently relying on me passing on messages and what they write in their letters. I'm waiting months between each conversation as I'm waiting for my appointments to be able to ask these things. It's ridiculous seeing as they work in the same building! Should i be pushing for a cardiac investigation to rule it out? Assumptions are being made that could cause me real bother.

Has anyone got any suggestions?

frogmorton

Jenzie I also have lung problems now :roll: . Not sure 100% what it is, but I get out of breath easily and cough far too much. Am on an inhaler for it.

I would definitely push for cardiac tests if I were you - surely safety first?

Love

Toni xx

dibdab

Hi Jenzie, sorry to hear about your problems. Like you I have RA and lung problems (bronchiectasis) resulting from repeated chest infections/pneumonia resulting from methotrexate not being reviewed by my previous rheumatologist. I'm just wondering whether you could ask your GPS to request a cardiology review if there have been questions asked by your consultants? My other thought was whether it's worth speaking to PALs at your local hospital, they may be able to advise 're the two departments communication, or lack of it! I have to say my current rheumatologist referred me to respiratory for tests and the two consultants worked effectively together to care for me, though happily my bronchiectasis is well controlled now and respiratory have discharged me.

jenzie06

I had a ct scan to check for bronchiectasis but it came back clear.

I don't understand my low gas diffusion but my ability to maintain my oxygen levels even when I've had pneumonia.

The nurse doing the test was asking if I get symptoms as I should do with the level of my diffusion but I don't know what symptoms I should be getting?

I'm trying to buy holiday insurance and I have absolutely no idea what to say I've got?! Typically rheumatologist is away this week. I've rung the resp sec and she said she'll pass the message on to the consultant.

I have to say this news has had me rather worried today. Trying to do things then fretting I'm getting out of breath. It's totally psychosomatic!! :P

stickywicket

jenzie06 wrote:

I'm trying to buy holiday insurance and I have absolutely no idea what to say I've got?! Typically rheumatologist is away this week. I've rung the resp sec

What you've got is what travel insurers call 'an undiagnosed condition'. They simply won't insure you for it or for anything connected with it. It's a nightmare.

Try to get a diagnosis before booking. We now go through a broker as none of the usual online sites will touch me since I had the pneumonia and collapsed lung. Whatever way you do it, I'd recommend you book by telephone. That way you can be sure all the right questions have been asked and answered.