I have been on Methotrexate for about 8 years now, even though it doesn't seem to do me much good. I am also on Leflulamide and hydroxy.
I have got cellulitis and last November I developed an infected ulcer on my leg and was in hospital as it became very serious. I was only kept in for a few days because of the danger of me getting Covid with me being CEV. I am still having nurses come in to dress my leg all this time later.
I was also becoming increasingly breathless and was sent for a chest x-ray. 2 days later my GP rang and asked me to go to see her. She said there was fluid in my lungs and it was pulmonary oedema and she would refer me for an urgent appointment to see a respiratory consultant. Because of the pandemic, I was informed that it would be at least 18 weeks before I saw one and although my doctor tried to get me in to see one sooner than that, it was not possible. In the end we decided to see one privately and he said that he didn't think that there was any fluid there but that there was a lot of scarring on my lungs. He asked questioned like; have I ever smoked, been around asbestos, kept birds or have a pet, to all of which I answered No. He seemed puzzled and then latched onto the fact that I am overweight and said it was probably caused through that.
I will be having a C.T. scan on my chest on 31st March. My question is to ask if any of you have been affected in this way and if Mtx could be the cause of it. I know you are not doctors but it would be helpful to know if any of you have thoughts on this.
From what I understand I'm sure having RA can affect your longs. Not sure about methotrexate affecting lungs but I know I had to stop it a gew time because of my liver and it can affect platlets in your blood. I have had to have chest xray before starting any new medication such as biologic and jak x
I was diagnosed with RA almost a year ago. I get Very breathless sometimes I feel I am not getting enough air in. When the Doctor did a chest X-ray he said my lungs looked Like someone who has asthma very scarred but after doing a flow test itShowed no asthma so yes I believe that RA can effect your
If he was asking you about hanging around with birds then does he think you might have pulmonary fibrosis? This can happen for lots of reasons, and sometimes for unknown reasons. Having RA can be a cause, and there is some evidence that taking Methotrexate can also be a cause
Another type of lung problem, interstitial lung disease, is also associated with RA.
Very, very rarely Methotrexate can cause pulmonary toxicity - but I think there are very specific indications that a lung specialist would hear when listening to your chest.
Not a clear answer I’m afraid - it could be either the disease or the drug, or something else entirely! Not long to wait for the CT scan, so you should get answers after that.
Hi, I have Rh for 11 years now. On methotrexate and benapali. Diagnosed with mild pulmonary fibrosis 3 years ago after ct scan. Apparently 1% of rh patients suffer from this. My consultant says can be caused by methotrexate or rh itself. Hope this helps. So far fibrosis doesn't appear to have progressed too much.
It's quite a worry if it is that, as reading about it, as I have done just now, it seems that there is no cure and only a few years of life left after diagnosis. I will just have to wait to see what the CT scan shows. x
I was on methotrexate for 8 years when I developed a lung problem. My consultant stopped the methotrexate straight away and I had a CT scan which showed I had some pulmonary fibrosis which was mild on a lung function test. My consultant said this could have been caused by either the RA or the methatrexate. He reassured me that now that I was off methatrexate and on firstly rituximab (which didn't work too well for me) and now baricitinib which has proved excellent at controlling the RA there is no reason why the pulmonary fibrosis should progress. I am now 4 years past getting this diagnosis and it has never got worse. It seems to act differently to primary pulmonary fibrosis which is a progressive disease. Have you come off methotrexate or are you still using it? Perhaps this is something to discuss with your consultant.
Hi Weatherwax, I have been off Mtx since early February, but not for anything to do with my lungs. I had rung up to speak the rheumatology nurses because of the results of the chest X-ray and in talking to her I also mentioned that I had cellulitis and had been in hospital in November with an infected ulcer on my leg. When she got back to me after speaking to the rheumatologist she said for me to come off the Mtx to allow the ulcer to heal and ring them up in two weeks. When I rang them back I was able to say that there was a slight improvement in the ulcer so I was told to stay off Mtx until it was healing well and then go back on it. I asked if it was safe to go back on it given what had been said about my lungs and that I am waiting for a CT scan on my chest. I was told that the rheumy was not concerned about it causing that kind of problem. However, now that the ulcer is much better (although not completely better) I have been on and off antibiotics for an ear infections and a small crop of infected spots. For that reason I didn't go back on Mtx. I have now decided not to go back on them until I know the results of the CT scan. When I saw a respiratory consultant I was not impressed with him at all. I asked him if it could be anything to do with having RA or taking Mtx and he sort of fobbed me off but not answering me and going on to more questions. I got the impression that the idea was a new one on him!
I'm glad things are beginning to heal it must be a relief. The respiratory consultant you saw does sound like rubbish! After my CT scan I had a lung function test done under the respiratory consultant at my local hospital and I was told that RA can cause pulmonary fibrosis also methotrexate and that if you have developed this problem there are about 50% of RA drugs they recommend are avoided if possible. They never enlightened me about which ones! I never went back on methotrexate and I am now very well controlled by baricitinib. I hope you get sorted to your satisfaction.
I am seeing a pulmonary specialist on February 26 and I, too, read all of that scary stuff on the internet and about the short life expectancy so I am glad that weatherwax wrote.
I don’t think Mtx affects the lungs at the dose we take...but it can cause pulmonary oedema in the doses used for the treatment of cancer.I took it for 7 years & many on here take it for much longer with no problems.
Did you tell the respiratory consultant all the drugs you are on?
Sometimes..... if they don’t actually prescribe a drug GPs miss mentioning it especially on emergency referrals.
Hi AgedCrone, I have to admit that I didn't like the consultant much. We paid all that money to see him and he was ten minutes late calling me in and I was only in with him for 15 minutes. He even charged an extra £65 to give me a breathing test which just consisted of me using something similar to a peak flow meter but was attached to a machine. I handed him a list of all my medication which he looked at quickly and said it looked like an order from a chemist because there was so much on it. At the end, he asked me to pay there and then which surprised me because they usually send an invoice afterwards. I had left my handbag with my husband in the car so couldn't pay him there so he rang up during the evening for us to give him payment. He seemed to latch on to the fact that I am overweight (although not grossly so) and said if I lost weight I would be well.
That doctor sounds a disgrace...in all the years I have had a private Consultation I have never had a doctor ask me for payment....as you say an invoice is the usual procedure.I hope you told your GP what dreadful treatment you received......maybe she will try a bit harder to get you an NHS appointment now?
I’d make it very clear you don’t want to see that doctor again....certainly not privately.
Hope things look up for you soon...I’m usually quite happy to hang on for Check ups etc..... ...luckily I haven’t needed one lately...but it seems the long waits we are experiencing are worse than ever.
I had pulmonary effusion last July after 15 years on methotrexate with severe sickness bouts from 2013. Rheumatologist thinks methotrexate was the cause so stopped taking it and had a course of steroids and I’m now trying Etanercept after a bad flare from methotrexate withdrawal
It happened gradually but I think I started to notice the pain and swollen fingers in about 6- 8 weeks I remember by Christmas I thought I would lose my fingers! I was in agony.Rheumatologist gave me steroids but they didn’t help. Since starting Etanercept my pain has gone and some of my fingers have gone down to normal but think 2 are permanently damaged. Hope this helps! Oh and I’ve not been physically sick since October so we know it was induced by methotrexate. Take care. X
Hi I am on mtx have been on it for about 15 years last year I got a bit of a cough and increased breathless I had xrays but was clear and having a scan on Sunday so we will see if that shows anything but hope you get sorted soon it's horrible not being able to things you used to it's bad enough with ra but being out of breath when you try and walk up the path good luck x
Hi Holly Iv had my test results at last I must admit I'm not a lot wiser my rheumatologist has sa I have abnormality in the left lower lobe and a dilated thoracic aorta so now I have to wait for new appointments how are you doing xx
Hi Cheryl, that must be so frustrating for you. I have found that they use a lot of their jargon and you come away wondering what they were talking about. I hope your next appointments come through quickly. I am getting a bit nervous about my appointment tomorrow morning. As if I don't have enough to contend with I suddenly developed pain in my back a bit higher than it usually is and I had trouble walking with it last night. It is a bit better this morning so I will have to hope it continues to improve. Keep your chin up Cheryl, although I know that is easier said than done. xx
I will try and you are right the things they say iv Google it but it is probably nothing ,the pain in your back may be you slept a bit differently sometimes it takes a few days to right it self good luck for tomorrow let us know how you get on xx
I was diagnosed with bronchietasis about 2 years after being diagnosed with rheumatoid arthritis. Im not sure whether it’s related to methotrexate but have heard your lungs can be affected. It’s called institutional lung disease.
Yes I’m the same never smoked or had a chest infection in all my life, I was on methotrexate about 6 years and never been overweight, iv got lung disease (scaring) from methotrexate it’s on my medical notes , it’s changed my life I retired in January so hopefully enjoy life without stress x
Thanks for the message, I worked with children in a school 30 years and because of COVID the doctors advised me to give it up which I was able to do , my breathing isn’t to bad but with arthritis as well getting things done is getting harder things I always done myself hubby’s helping with now , iv just retired so I’m going to enjoy it x
I am certain that mtx caused adverse reactions to my entire system. I developed a dry cough that was so intense, I thought I had broken ribs. My hair fell out. Every part of my body that is supposed to have a certain level of moisture dried up. And suddenly out of nowhere, I have what was later called an "asthma attack"-- first time ever. I've researched and found that people with the MTHFR variant (like me) should not take mtx because of a problem absorbing synthetic folic acid. Rheumatologists don't know much about that, unfortunately. I've since moved on to other meds, but still have a lingering "asthma" issue now and then.
I have Rheumatoid arthritis and it can affect the lungs. I have taken methotrexate along with Simponi Aria infusions since diagnosed in early 2019. Soon after diagnosis I was having pain in my chest. Ct Showed nodules in left lung. Over 2 years andAfter several CT’s and a PET scan Drs recently decided it is rheumatoid nodules and inflammation. I wish you the best of luck. Never give up.
Thank you so much for your answer Nanascade. I thought I had read somewhere that RA can cause lung problems, but none of the doctors seem to have picked up on that. What treatment are you being given for it?
Hi Holly-Willow. Doctors are not giving me medication specifically for my lungs. They say RA medications, MTX and infusions of Simponi Aria, began controlling the growth of the lung nodules. The last CT I had showed no new nodules and one had actually shrunk slightly. Now they will follow up with another CT after one year to check status. I always have inflammation in my lungs in all CT’s. They say RA causes the inflammation and nodules.
Thank you for your reply Amy, I have never felt that my RA is properly under control. I thought I had read about lung troubles being caused by RA somewhere but can't remember what it said about the subject. Do you have lung problems caused by RA? and if you do, what treatment are you having?
I was treated very early hence I remission after a year and a half treatment, no joint damaged and no lung issue. I am a very lucky one. However, I do feel the pain of those who can’t get RA under control after many years. The horrible pain for such a long time will be very depressing and killing.
Morning. RA can affect all of your organs ☹️. It’s a systematic disease so can affect anything and everything.
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