Hi, I’m new here. I started Methotrexate 3 weeks ago and I just increased the dose last night. I’ve been very breathless all day. My partner reminded me this also happened to me last week too after my dose. I did mention it to my Rheumatologist on Friday .. as I also had an attack of pleurisy through the week too with very painful lungs.
I have asthma. I get pneumonia frequently and have for 10 years. There’s nodules on my lungs. My rheumatologist didn’t do any lung tests before I started the medicine, but a lung function test is booked for next week. I did have an MRI last year so I’m assuming that was enough and I was ok to start?
I know it can be bad for your lungs and given my history of lung issues I’m not sure what to do? Any help is welcome.
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Tonkie
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Welcome to the group. I’m sorry but we can’t advise you what to do other than speak to your rheumy team and ask them the questions so they can allay your fears.
I’ve been on MTX for 7.5yr, in 2021 I had shortness of breath, initially thought to be worsening of asthma. Tweaking meds didn’t help, so I had a HRCT scan, which came back with pulmonary fibrosis. My rheumatologist insisted I stop MTX immediately, and my gp organised an urgent respiratory referal. I was seen 2 weeks later, by a respiratory consultant, who said recent research shows MTX actually delays ILD, and insisted I restart it. I’ve continued on it since. I am monitored closely and have yearly lung function tests, and things remain stable.
I’d request a HRCT given your lung history, and speak with your team again re your concerns.
It’s not routine to do scans prior to commencing MTX, so I can’t comment on whether that would have been adequate
hi, thanks for the replies. I’m also on Hydroxychloroquine and that hasn’t made me breathless so I assume it’s the new medicine. My rheumatologist said it was probably because I recently had pneumonia (right before I started it) and my lungs are probably a bit inflamed. She isn’t seeing me for 10 weeks now. I took another dose last night and the same thing has happened again. I wasn’t breathless before. My chest is very tight and been reaching for the inhaler all day but it’s not helping much. I’ll contact the Rheumatology pharmacy tomorrow. I’m really reluctant to stop the med as I really need some relief now. I’ve been untreated for 7 years and this was my first ray of hope that life would improve 😔
Definitely contact your team/ pharmacist asap. Methotrexate isn’t the only drug these days and there are many others you can be given. If your breathlessness is a direct result of MTX you need advice sooner rather than later. Hope you get sorted out and feel better very soon.
I’m not very in the know because no one listened for years. Then when I went to the rheumatologist she diagnosed the wrong thing for a year until I finally got a scan at the right time. Then they found something in my blood and she called me and said you need to start methotrexate too. So forgive me I don’t know there’s other drugs no one has really told me much. All I know is she said this one would make me feel better and I’d get some of my life back. I’ve not got a temperature and i don’t feel worse than usual. I hate pestering them. My last appt it was kind of ‘why are you here’ .. you sent messages asking me to make an appt 😔
Oh bless you, of course you don’t know about other drugs, why should you? You trust the rheumatologist to do the best for you but it sounds as if yours could perhaps do more and better.
It’s your body and your onward health so if it were me, I’d push to get the right treatment and the best drugs for my situation. Don’t be worried about doing so, it’s the clinician’s job to do the best they can for you. They don’t live with the consequences of poor treatment but you do.
I was also a clinician in the NHS for many years and I hope you’ll hold others to account if necessary. Best of luck.
thankyou. I’m not very assertive and being told you’re wrong for so long.. even with my fingers so swollen they threw anti depressants at me and told to do mirror therapy (look at my good hand in the mirror and it will trick my brain into thinking it’s my bad hand) has kind of knocked my confidence. I’ve maintained all along it’s my joints. I also have angiodeoma and autoimmune reynaulds as it’s attacked my vascular system too as the swelling was so severe my hand turned blue/black. She said it was ‘complex regional pain disorder’ as multiple rheumatologists hadn’t ‘seen anything like it’. They were all kind of insinuating it was in my head. And since they’ve found the evidence they’ve just thrown the drugs at me and won’t really answer my questions or listen to how I’m feeling. I’m struggling to walk or get up and down the stairs and my rheumatologist doesn’t even know. If I say anything to her all I get is ‘you’re on the right drugs now’
Unfortunately we all need to advocate for ourselves and read up as much has possible about medications and voice our opinions or get help too do so. I had to push for a diagnosis kept on going back by the time I had blood tests before they told me I knew what I had it was no surprise.
You say you do have problems with your lungs which presumably your GP knows about so why not try to speak to him/her to get a clinical opinion?
Methotrexate is a much maligned drug..,.because people that is doesn’t suit quite naturally write in about it.. ….but many more people take it for years with great success.
I’ve been on methotrexate for many years. About a year ago, I started getting breathless and coughing. Had all the tests…X-rays, ctscan, breathing tests etc …and progressive pulmonary fibrosis, caused by the rheumatoid arthritis, was diagnosed. They were able to distinguish from that caused by methotrexate. I’m now on Nintedanib, to stop the progression.
Hi sorry to hear this. If you feel unwell or have a lung infection you should stop your Methotrexate as it reduces you immune response and you can become worse. Definitely speak with Rheumatologist. If you read the information leaflet it states clearly that if unwell or some reaction to miss a dose and see a GP or Rheumatologist. Hope you're feeling better soon. I currently have a chest infection and have stopped my Methotrexate till examination on Tuesday. 🤞your better soon!
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