Would be really grateful to hear if anyone has chest problems like Interstitial Lung Disease, Pulmonary Fibrosis, heart issues etc due to their rheumatoid disease or RD medication - & the symptoms, how it came about & how they deal with it. Greatly appreciated for others' experiences on this.
I've been a year on the Jak-inhibitor Filgotinib (following a year where nothing controlled the RD; before that on MTX /LEF about 20 years) & have developed chronic breathlessness, dry cough where head pounds as if a stroke is coming on, high BP & bad heads over the last year & hoping it's not a serious cardio-vascular issue, as preventing me doing so much. Seeing the rheumy next month, but thought some of you may have helpful comments.
Edited: Sorry I couldn't find anything when I searched first, but now that I've posted I see related posts showing on the right - so sorry if this is a repetition for people.
Thanks very much!
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Blodynhaul
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Thanks helix. Saw Rhemy end of June & told her about it, she didn't check much but said could be asthma & ordered 'pulmonary function tests'. Chest xray same day was 'OK'. Saw GP end of August & chest sounded clear (as expected as it's a dry cough etc) & was given a ventolin inhaler (which hasn't helped much, so suggests to me not 'just' asthma). Asked about when I'd be having the pulmonary function tests & he said the rheumy would have ordered them. Heard no more on them. I would have already have chased them up but combo of not managing to phone surgery early enough & daily struggles & looking after my partner etc. Will have to make big effort to see GP this coming week, before seeing rheumy in Dec. I had had an ECG earlier in the year they said was fine, though was having a lot of extremely high BP & HR. It's only 2 weeks till I'll see the rheumy anyway, so will try see GP first. Just wondering in the meantime about things as like to know what to ask about. Sorry won't ramble on more. Thanks for answering!
Yes. I was on methotrexate for RA from 2020 to August this year when I suddenly became too breathless one day to do my daily 5 mile walk. Long story short, I was diagnosed with ILD lung scarring either from RA itself or from Methotrexate, or both. I can no longer do the 5 mile walk, just 1-2 miles on the flat. Stairs , slopes, showering, dressing, undressing all leave me breathless. My advice would be to try and get a CT scan which would give a more accurate diagnosis. My heart is OK though.
Thanks so much Plumsoul, but so sorry to hear you have ILD - especially after not being on MTX long. Double-edged sword with both the RA/RD itself and the drugs capable of damaging the lungs. Very sad to hear of your reduced activity & breathlessness. Wishing you better times, thanks for the advice too X
hi, I’ve got Sjögren’s with ILD which was only picked up through CT scan, X-rays showed nothing and I had loads of them through my GP because of cough. It was my Rheumy who listened to my chest and followed it up. On Mycophenolate now which is a life saver. I still suffer with breathlessness on exertion but much more manageable now. Good luck, stay positive 🌺🍂
yes I am asthmatic anyway, but in Sept/Oct 2020 I suddenly became short of breath very easily. Initially they increased my inhalers and upped my steroids. When I seen the asthma nurse for review she was very concerned. She asked the GP to order a HRCT scan and refer to respiratory. My scan initially showed pulmonary fibrosis, and my referral was changed to urgent and seen within 2 weeks. My rheumatologist had told me to stop my MTX, but she disagreed and said recent research shows MTX delays onset of ILD, so it was restarted. I was given a 2-5yr prognosis, and left shell shocked. I was 55 and found myself preparing my bucket list. 7 month later the respiratory specialist called to say they had sent my scans to the Brompton who said although it looked like pulmonary fibrosis, it was actually damage from acid aspiration. Apparently it can still potentially become PF so she continues to monitor me. My latest lung function tests show that my lungs have deteriorated. However I have Ankylosing spondylitis and it’s fused my ribs, so I also have Atelectasis, which is pockets of collapsed lung. This is due to not being able to expand lungs fully. My chest expansion is 0.8cm, when it should be 5-8cm, throw asthma into the mix and it becomes quite complex.
At the same time my GP noticed the chest X-ray showed Cardiomegaly, heart enlargement. So I had to have an echocardiogram which showed some pericarditis. The cardiologist said it’s quite common in rheumatoid patients. My heart rate and BP would shoot up, just standing it would go from 65 to 110, and BP from 110/70 to 180/110. My gp put me on a beta blocker and ace inhibitor, which has resolved the issue. I should say I went 25yrs till diagnosed with AS, when they found fused SI joints and fused ribs. The theory is the years of uncontrolled inflammation have contributed to these issues.
Thanks so much Maureen. Blimey, it does sound complex indeed. Really feel for you with your lung & heart issues & long-standing AS undiagnosed for so long. Appreciate you saying about it. How frightening for you being told it was PF, even though it's not good presumably having acid damage. Really hope things can improve for you. glad you have some improvement with the heart side of things. Take care X
I have had a lot of issues on shortness of breath, palpitations and headaches the list Goes on. Some days convinced the meds but chest infections meant I had to go up and down on steroids. Then given an inhaler as GP felt asthmatic then sent me to a lung clinic. This said low asthma.
From here I still struggled and convinced chest infections but GP get not true asthm More RA related but consultant brushed that aside but I got what GP was saying.
Long and short of it I got really bad walking and being tired just to get to kitchen and running out of breath. When I saw Consultant I said I feel rank and I do t know what is going on. When he listened to my chest Heard a murmur. SId needed an echo.
I informed my GP The next day and within a week more bloods and echo organised as he could hear the murmur too. I have now been referred to a rapid cardio clinic.
Chase and battle if you don’t feel right get your GP to sort.
I am now on glycerol tritinate to help pain till seen
Gp and I discussed the fact since diagnosed with RA it’s been non stop add ons sojerns, Reynauds, asthma, fibromyalgia, basal cell carcinoma, over active bladder and now this!
Blimey Deeb! very sorry to hear about your endless struggles since having RD/RA. Not good at all. Yes, I'll pursue. Hoping very much the cardio side for you isn't as serious as it sounds. Grateful if you let us know how you get on with that. My rheumy said "probably a bit of asthma" when I saw her in the Summers, though I recognise it's not as I know about asthma after my mam had it for decades, plus the ventolin barely helps, so it's not a reversible condition like asthma methinks. Will push for answers. You did well to push & get answers, even though not resolved for you. Really hope things improve for you Deeb. Thanks for answering X
Interesting thread as I have recently developed breathless. I was initially referred to the surgery's respiratory nurse. She was concerned about the chest pain and organised an immediate ECG (normal). She prescribed GTN, aspirin a beta blocker and a statin. I didn't get on with the statin, gastrointestinal problems, so stopped it after 4 days. I was referred to the cardiac nurse. The GTN did nothing for me and the cardiac nurse said that that just about proved I didn't have angina. I've been referred for an echocardiogram next Wednesday. We will see what the outcome is from the scan.
From what I've read here, if nothing shows up I might try press for a CT scan, a good time to involve my rheumatologist me thinks.
Just back from a trip to Edinburgh. While I coped okay, Edinburgh town centre is very hilly. I just had took my time and got up the hills. I'm okay on the flat or going downhill.
Thanks so much Scottishlad. Sorry to hear of your breathlessness too. Sounds like you definitely need more input & proper assessment, more than the nurse can provide. Wondering what meds you are on& if you have RA/RD or what. Same here, I had ECG & X-ray, seemingly 'normal', but agree with you - by all accounts the CT scan is the best one to have. Take care and thanks for responding. It all helps, knowing others' experiences.
I'm on Cimzia, Methotrexate and hydroxychloroquine. The nurses I have seen are specialists and I would think they know more about their speciality than the doctors in the surgery.
Once the echocardiogram is done I will probably contact the rheumatology team for advice.
Thanks Scottishlad. Yes, see what you mean about the specialist nurses, I should have realised that. Good luck with the Echo. Agree with you, CT needed too. All the best and hope you can post some better news when you know. Thanks again.
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I started Filgotinib last July and within a few days has chest pains. I was checked for PE and all clear. 30 days antibiotics to try to clear it then admitted for IV antibiotics Discharged home. Now starting again but with an antibiotic continually to try to stop any further infections whilst trying Filgotinib again. I’m so hoping that this regime works as Filgotinib did address the RA.
Thanks so much Slinkyminx for your comments. That's very interesting to hear about your chest. Do hope you get on top of the infections as can't be ideal for you to be on continual antiBs, but can't be helped! Sounds like your low immune system is allowing chest infections to develop. I'm lucky I'm not having infections, but do have the chronic issues of cough, breathlessness & heads (being investigated currently) that I feel is due to the Filgotinib, but we'll see. Thanks again and All the Best!
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