Swapping/stopping mtx

[Scooooby]

Hello,

I don’t often post here but I’m feeling very low and need some advice. I’ve had RA since 2012 (diagnosed at 32), I was started on mtx and then Sulfasalazine was added and 5 years ago enatercept, things haven’t been that bad apart from I’ve been really breathless and breathing heavy for the past couple of years, which I’ve been to see the GP about several times and they don’t take much notice! Then last year I was continuously ill, I had shingles followed by a really bad chest and cough which I was told was a lung infection then a different GP decided it was pneumonia and I was given steroids which I ended up taking for 8 weeks until my cough cleared. I once again went to the GP about my breathlessness and was told it could be fibrosis so he’d refer me for a X-ray, I didn’t know what fibrosis was until I googled it when I got home and because of what I read decided not to wait the “roughly 3 months” and to pay for a privet scan, the GP phoned a couple of days later with the results and said I had bronchiectasis, and scaring to the left lung. I also had lung function test a couple of weeks ago and have now been told I have COPD! I’m only 44 and have never smoked so guessing this is down to all the meds I take? I don’t know if I should stop taking my mtx, stop everything, ask to be switched to something else, I really don’t know what to do!

I haven’t actually seen my rheumatologist for almost 2 years, however I have had appointments with the biological nurse (may I add phone call appointments only, how can they assess you properly over the phone!!!! )

Anyway I guess my question is I’d like to hear from anyone who had switched medication or stopped it all together?

[JenniferW]

Did you have covid by any chance? A colleague had scarring of the lungs as a results of the original covid infection. And the NHS description I have just read of bronchiectasis says it is usually caused by infection.

I wish you all the best, if it's any comfort I know an 87 year old with COPD and 10% lung capacity who still trots around attending meetings all over the county and maintains a fabulous garden, so it doesn't have to mean the end of an active life.

[Scooooby in reply to JenniferW]

Thank you so much for your reply, I did have Covid earlier this year, February 2024, maybe that could have contributed to it. I’ve tried to stay away from reading about it as I tend to be scared by what I’m reading! My lung capacity is at 50%, which I’m surprised about, how did it get this bad before the GP did anything! Wow, 87 and still active with only 10% that’s amazing! I know I need to try and be a little more positive 🙂

[ageddancer]

I have been on MTX for approx 20 years and I too have been told I have bronchiectasis and some fibrosing of the lungs...I am also being screened for Mgus..... but after the initial shock I am just getting on with my life and being positive. I am 79 and am dancing (exams) at a very high level, looking after any friends garden and eating correctly. I too have never tried a cigarette.

We all have bad days but being positive, looking after yourself well and "keep smiling" is a great help.

I do hope you get some positive outcomes and get regular check ups. I now practice good breathing techniques and make sure when I am out walking at least 8,000 steps per day that my shoulders are back and down and I am not slumped forward like so many people walk these days. Big hugs Sue☕🙂

[CallMeSunny]

Sorry to hear about your present health situation, Scooooby. I think you really do need to inform your rheumatologist what’s going on, exactly as you have done here. Given the difficulty you’re experiencing in actually seeing him/her, it would be best for you to send a detailed email (keep a copy) to their secretary and request a f2f appointment. You should have contact details for rheumatology secretaries on any clinic letter following an appointment, phone or f2f. If not, then ask to speak to them (using your hospital switchboard) , then you can request the email address. Best of luck ….hopefully it’s not too long before you get some respite and better care. X

[WilfDog]

Hi I'm sorry you have received this news, but

I really think you should contact your rheumatologist and be firm that you need a f2f appointment. You shouldn't just stop your medication, you need to discuss it with your consultant so they can assess whether there is an issue with the meds you currently take.

Covid can have huge repercussions on the body even if you're healthy so this could be a factor. However, it needs to be discussed.

Exercise is a fantastic way to help your lung capacity. I do Qigong but there are many ways you can help expand them.

Also look at therapeutic essential oils and supplements like doterra to assist with your lung capacity. Hope you start to improve.