Chest x-ray - not great 😕

[Moomin8]

Hi peeps🙂

Hope this finds you as happy and healthy as you can be in 2020😁

My RA path has taken a slight diversion this year. Having been diagnosed late in 2015, I'm not long into my RA journey in comparison to many of you guys. I'm seropositive, and have been since the beginning, and built up to Metoject (20ml - reduced recently to 10ml) Cimzia (biologic) and sulfasalazine as my main RA meds.

I had a fall in August and hurt my ribs (along with other bits and pieces) which have been painful ever since. It was really difficult to breathe for a long time. When I fell, I did go to hospital but they weren't bothered by my ribs - nor was my GP. I have had a bad chest since October- had Clarithromycin (three lots) the last course over Christmas. My last RA appointment was 7th Dec and I was sent for a chest x-ray. This was only reported 3 weeks later after I rang every day (after one week) because I felt so ill. I was told 'it doesn't look good at all.' :Left lower lobe linear atelectasis, scarring, adhesions, blunting of the left costophrenic angle and an urgent referral to the respiratory clinic!! Urgent being 6-8 weeks so haven't heard anything yet🙄 I've been told to stop all RA meds and take prednisone until further notice - I'm taking 7.5mg daily. My body is flaring big time and I have such pain in my left lower lung area.

Has anybody had anything similar? If so, what RA meds might I be able to start taking in time? Are these new JAK ones any good?

On a positive note - I'm still working full time and I've learnt to swim! I go to swimming lessons weekly - have been since September 2019 - and am loving it! Having never jumped in or been brave enough to go out of my depth, I can now dive in and swim lengths!!

[bunnycaramel]

Hi Moomin8

I’m sorry to hear you have had a bad time recently. Hope you see the respiratory specialist soon.

[Moomin8 in reply to bunnycaramel]

Thank you 🤞

[Hidden]

You must feel very much in limbo. I hope they can see you sooner.

Very impressed by the swimming 🏊‍♀️.well done👏👏

[Moomin8 in reply to Hidden]

Limbo...those were the days 😁Thank you for the applause👍🏻

[Hidden]

ah great news about swimming go back to this for first time in ages, I am nicknamed dolphin by the family.

[Moomin8 in reply to Hidden]

🐬I'm not quite dolphin standard🤣

[Hidden]

Lung problems are quite common both with RA and the drugs we have to take. I have Bronchiectasis. Hope you find answers soon.

[Moomin8 in reply to Hidden]

Sorry to hear that - bronchiectasis? What do you have to do about that?

[Hidden in reply to Moomin8]

Use inhalers and try not to get chest infections like pneumonia or pseudomonas colonisation.

[Moomin8 in reply to Hidden]

'Pseudomonas colonisation' that's a mouthful! Not sure I could swallow all of those letters at the same time 🤭Thank you for your help

[Hidden in reply to Moomin8]

You wouldn't want to. It would put you in hospital for two weeks at least on IV anti biotics. My last little episode I got colonised and also had Pneumonia. Resulting in Sepsis. I was unconscious most of the time, delirious the rest.

[Moomin8 in reply to Hidden]

😕

[wishbone]

I was diagnosed with scarring of the lungs some 4+ years ago and been taking a JAK Inhibitor (2mg baricitinib) for getting on 18 months. Other than low grade sinovitis contracted a few months back, I've not had any problems. Just prior to starting baricitinib my respiratory consultant told me that it might help my lung condition, then in the same breath he said it could do the opposite too! Apparently upper respiratory tract infections are a common side effect with baricitinib and there's one or two people here who have had chest problems since being on it. Whereas I've yet to experience any issues despite having this lung condition. Taking most if not all of these RA meds seems pretty much a roll of the dice to me, especially with a pre-existing condition.

Hope they sort you out soon.

Peace... v

[Moomin8 in reply to wishbone]

What??? That's crazy🥴Dammed if you do; dammed if you don't 🤷🏻‍♀️🤣Interesting to hear about the JAK Inhibitor though - hope it continues to work for you.

[oldtimer]

I do sympathise! I'm also in limbo with chest problems, awaiting the result of chest X-ray which is going to take six weeks due to shortages of radiologists. In the meantime, can't cope with walking the shortest distance and using salbutamol in a spacer. Oral steroids increased too....and feeling very frustrated.

[Moomin8]

That's rubbish eh? Have you been taken off your RA meds? How much prednisolone have you been asked to take? Hope you x-ray comes through sooner 🤞

[Otto11]

Hi sorry to hear you are going through this. It’s scary isn’t it? 3 years ago on screening for new Biologic my chest X Ray showed non specific lung disease & nodules so referred to Respiratory team. Like you long waiting lists which dosnt help. I like you had stopped all meds too.

Because of the wait I was told my Consultant had phoned them & suggested Rituximab to be the best Biologic for lung problems. Unfortunately the new Biosimilar Truxima had just been released so started on that instead. I have had so many lung tests & have 12 weekly CT’s still. They are now talking about swapping me onto Baracitanib. I’m seeing my Rheumatology nurse tomorrow. So yes there are still options but more limited. Please let us know how you get on x

[wishbone in reply to Otto11]

Along with rituximab, my consultants reckoned azathioprime and mycophenolate were other options for me. Though the latter is not usually used to treat RD, but according to my respiratory consultant, has shown indications of helping people with lung disease though he didn't seem optimistic about it being very effective. I was prescribed baricitinib by rheumy not because it's less risky with lung problems, but because I have another condition that makes me prone to infections and baricitinib leaves the body much quicker than other meds should I need to stop taking it.

My lung condition was also found when having a routine x-ray to start methotrexate. I hope your problem doesn't turn out to be anything too serious.

[Moomin8 in reply to wishbone]

Thank you for taking the time to reply. I'm sorry to hear that you came across this when not even expecting anything! As you say - so scary😥I'm hopeful that there might be options, but each consultant seems to have so many different opinions. I just hope I can start something soon as I'm flaring ridiculously! Hope what you're taking is helping your conditions.

[wishbone in reply to Moomin8]

Consultants having different opinions is certainly my experience, hence the last line of my initial post regarding meds. I got fed up of my respiratory consultant contradicting himself as well and am relieved I don't need to see him again.

There may be more meds available to you as I can't take biologics, or at least it's high risk for me to do so because of yet another health condition.

I'm off for a rheumy appointment this morning so that should be interesting.

Good luck to you Moomin.

[Moomin8]

Hi 🙂Thank you for sharing your experiences- it seems very similar to mine. My consultant has put me on steroids until my appointment and says she won't prescribe anything different until I see the respiratory team. Are your lung tests and CT scans showing any change?Just wondering, as they're talking about swapping your meds? Let me know how you get on tomorrow x