Hi, I have just joined having been diagnosed with PF. I have an inflammatory arthritis called ankylosing spondylitis. I take Methotrexate as well as biologic injections fir that. My Rheumatologist has asked me to stop MTX for now as it can be a cause of PF. I’ve been on it 4.5yr to treat peripheral symptoms. I feel it’s more due to the inflammation itself, as my spinal and rib pain have been much worse.
Has anyone else been on MTX and were you allowed to continue. If I miss one dose I suffer badly with pain and swelling in my hands, feet and knees. I wouldn’t mind if he offered an alternative, but he says that needs to wait till he sees me in clinic to discuss options.
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All drugs have side effects, some more than others and can affect different people in different ways with varying degrees of severity. Often a choice between the devil and the deep blue sea. You are really best advised to wait for that discussion on your options, to be made aware of such potential side effects and/or quality of life to expect with them.
Wishing you all the best for a positive outcome and hope you get a quick appointment.
Hi Maureen I understand that you can ring and get an appointment fairly quickly with the Rheumy department at the hospital if you think you are having a bad flare. They should be able to answer any other queries you may have too.
Do call them and let us know how you get on. Could be you may have to wait till Monday now though to chat with them on the phone.
Hope you get some resolve real soon. Meantime you could get some answers in the NRAS community here:
Hi, my rheumatologist phoned me yesterday after I’d left a message re the diagnosis of pulmonary fibrosis. It was then he insisted I stop MTX immediately, but couldn’t offer an alternative at the moment. He said he would try and get me an appointment with him ASAP to discuss options. Obviously he’ll want to wait till after I see respiratory team on 5th May. My last urgent appointment with him was a 5 week wait in January
Hi Maureen and welcome to the lung site. I cant advise on PF but have rheumatoid arthritis and take methotrexate. I have been on this medication for less than 2 years and my initial dose was low and worked for about a year, it was increased as it wasnt working as well, they then put it up to the highest amount but sadly my hair started falling out so it has been dropped again. I have tried quite a few new meds with the metho but they didnt work well. I was then put onto Baricitinib but kept getting infections. I wont go back on this as my friend who was on this got shingles in her eye and spread to her brain. Rheumatology have told me I need to go onto a biologic as my arthritis isnt controlled but am loathe to take these now. The only thing that seems to work for me is the steroid shot they give me in my bottom. I know all meds have side effects but some side effects are not worth taking the medication for , it depends on how you are. I am seriously considering stopping all of it. Sorry for the long post. I do sympathise with you as the pain is terrible, perhaps give them a ring and ask about a steroid shot. Irene x
Sorry to hear your struggle with meds. I was taking 25mg MTX, for my peripheral pains as my feet were excruciating on 20mg. 2 of the toes on my left foot have subluxed once the swelling subsided.
Meds are all about weighing risks and benefits. For me, if I don’t take the meds to control the inflammation the PF will get worse. There are also issues with my heart from the inflammation, so the idea of them not controlling inflammation terrifies me. Unfortunately these Rheumatoid conditions cause more than just joint problems. My rib cage is fused and I have no chest expansion, so this along with the PF and asthma is not a good combination. I will happily take whatever I can to slow progression of either the AS or PF. I already take low dose steroids as I have life threatening adrenal insufficiency, as my adrenal glands have severely atrophied, after years of steroids treating polymyalgia.
Hope you find something you can tolerate that controls it for you. Take care 🤗
Sounds like you have alot going on Maureen, it is the inflammation that causes all our problems and wish there was some way to control this without it doing so much damage. I was given some leaflets by the rhuemy doc a week or so ago on biologics and am so unsure about it, I just dont know what to do. It seems to be either my chest suffers or the rhuematoid. One of my toes has started bending under my big toe and causing a problem so do understand your pain. I pushed for an appointment last time and only had to wait for 2 weeks, good luck x
I took mtx for a few months but it gave me serious lung problems and I was taken off it immediately. I've been on prednisone for a while, and tomorrow have my final appointment with the rheumatologist before I start on a biological treatment, the name escapes me atm.
Thanks. I’m already on prednisolone long term, and a biologic that’s not working too well now after 4yrs. Unfortunately he refuses to swap me to another, despite all my scores worsening, and chest expansion becoming non existent. Recent research seems to suggest MTX doesn’t cause PF, and may actually delay its onset. I’ve taken it 4.5yr, and it has given me my independence, so if it is safe to continue I’d like to stay on it. I feel it’s the biologic that needs changing.
Hi Maureengibson, I read your post with a lot of interest as I too have Ankylosing Spondylitis and Chron's Disease ( the two can come together). I'm 67 and was diagnosed with AS at age 20 and Crohn's in 1980. I was put on Methotrexate 10 years ago. My dose is currently 12.5mg. It controls the peripheral joints inflammation and iritis of the eye. It also helps control inflammation with Crohn's. I've never had any problems with it and am checked regularly. However, like yourself, AS has impacted my chest/ribs/breathing. I've noticed over the last year that my breathing is worse during activity. How much is due to the fact that my ribs don't expand much, I'm not sure. Am going to request a chest x-ray and maybe a respiratory appointment, now that things are getting back to some normality. Would you mind telling me what other symptoms you are getting with regard to pulmonary fibrosis. I did know it was a risk factor of AS but quite rare - so I was told anyway but it has not been suggested to me that it's a side effect of Methotrexate. I have a telephone appointment on Tuesday with the Rheumatologist, so will enquire further. I'm so sorry you have been having such a bad time of it. Like yourself, I have had it in my feet, knees, shoulders, eyes, jaw, hips (both replaced over 15 years ago). Methotrexate has controlled all of that and I haven't had a single episode of iritis since and all other joints are ok atm. I try to keep active and do an AS class on Zoom plus tai chi and walking. Oh, and 'Singing for lung Health run by The British Lung Foundation. I am a bit concerned about my breathing though as I stupidly smoked up until I was 50.
Hi FreddieFox, sorry to hear you have similar challenges. It’s difficult to know which of my symptoms is the pulmonary fibrosis and what’s due to the rib restriction. I’ve had shortness of breath for years, and found out in 2016 I only had 0.8cm chest expansion, so I blamed a lot of the breathing issues over the years on that. However in September last year, I started needing to use my bronchodilator more, when previously it was only if I had a viral infection. Initially I was given a week of higher dose steroids, but was still wheezy when lying down. So Dr organised chest X-ray and review with asthma nurse. I scored in the red zone fir my asthma so the nurse added an inhaler to relax the muscles and suggested a CT scan and respiratory referral. The CT showed fibrosis in the right lower lobe, so I’ve just had an urgent appointment with a consultant in Thoracic medicine, they are not seeing routine referrals yet, but the result changed it to urgent.
I was told by my rheumy to stop the MTX which I wasn’t to happy about as like you it controls my peripheral symptoms very well. It used to be thought that MTX caused PF, but newer research suggests it doesn’t and may delay onset of PF. Thankfully the specialist agreed and said I should not stop the MTX, which I was due that evening.
My symptoms were getting very short of breath with any incline, stairs or long walks, with severe head sweats and respiratory rate was around 30 a minute. I also had a lot of fatigue, and although this can happen with AS I didn’t suffer to badly before. I also seem to cough more and have to clear my throat. In March my GP added a tablet to my asthma meds which has helped and I don’t find things as challenging as I did.
They say 1% of AS patients will develop PF, the specialist did say it’s normally the upper lobes, but that’s not absolute. I now have an appointment with my rheumy in 3 weeks to discuss options, I haven’t bothered telling him I’ve continued the MTX as the respiratory specialist was adamant, and seems much more knowledgeable than my rheumy. I should say my chest X-ray was fine, other than showing an enlarged heart which has just been discovered and now on treatment for. The CT also showed areas of Atelectasis, which is areas of the lung has collapsed and gas exchange can’t take place. She said this was produce to the chest restriction. I’m now waiting to go for lung function tests, and then meet specialist again to make a plan. Unfortunately it’s a 100 mile round trip for each visit, as for some reason my referral went to the neighbouring trust, but she was lovely knowledgeable and didn’t rush me despite running 80 mins late. So she said I could repatriate back once everything is done, I also will probably be referred to an ILD clinic (interstitial lung disease). Sorry for rambling on, it that’s basically the whole story. Hope you get some answers soon, take care 🤗
Than you so much for your reply. Plenty of good information there. I had my phone appointment on Tuesday with the Rheumy and he is arranging a chest xray. He did ask whether I was coughing up anything but I said no, it was just getting breathless. I don't suffer with asthma and am not prone to chest infection - yet!! Anyway, he is going to contact me when he gets results. I made a list of all the things I wanted to run by him, which helped. Am so glad they did not stop your Methotrexate because as long as you are doing OK on it, it would be a shame to withdraw it. I have had AS for a long time now and I remember the Consultant telling me years ago when I asked about the heart and lung complications associated with AS and he said ' I wouldn't worry about that, it will be your posture that will cause the problems. Charming I thought! Thanks again for your help.
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