Methotrexate and breathing symptoms

[Sunnyseas]

I’ve been on mtx for a month now, and since the last dose have noticed my breathing feels more strained, as well as the nausea & fatigue. I’m speaking to my consultant soon but wondered if any of you had a similar experience. I’m not sure I want to continue with these side effects.

[GranAmie]

unless you are talking f2f and soon, I wd suggest you contact your GP. This happened 2me: in ?2017 after maybe 15 months on mtx i developed a cough andGP sent me for anurgent chest xray etc and told me to stop injecting mtx. By the time i saw my rheumatologist i was back in w/chair and lung damage found. the pneumo consultant reckoned it was the mtx ; lung capacity dropt to 75%.after being seen by the chest consultant i upped my swimming and sang like mad around the house [badly, but who cares] 4 yrs later my rheumy told me it cd have been the RA. I'm not sure abt that tho' because after abt 6 months and regular checks i was discharged from chest clinic as lung capacity had risen to 95%.

So best check... just in case. MTX works very well for many but for some, like me, it doesn't. . I wish you well. xox

[LoneEra]

Any shortness of breath should be reported to your doctor immediately - don’t wait for your appointment with the consultant. Always err on the safe side.

Personally I felt absolutely awful on MTX - even with the folic acid topped up. But others have definitely had better experiences.

Hope you get it sorted x

[Sunnyseas]

I contacted my gp surgery, they said speak to your rheum team, they precribed it. I was pretty shocked they didn’t want to know, so called 111. Much more helpful.

[Deeb1764 in reply to Sunnyseas]

I had this issue and now ongoing but report to RA team and keep mentioning it as I now have asthma which never had before and took 4mo this before anyone would listen. My GP sorts meds for asthma now not RA team.

[Marionfromhappydays in reply to Sunnyseas]

Blimey your GP doesn't sound the most helpful. Sorry you had to go through that

[LoneEra in reply to Sunnyseas]

Terrible! Sorry to hear this. Do you have the helpline number for your rheumatology team? Could be worth calling them ahead of your appointment with the consultant.

[mjrminor]

I had to stop taking methotrexate after about a month for the exact same reason, so definitely get hold of your rheumatology team. Breathing issues is listed as one of the potential serious side effects of methotrexate.

[Sunnyseas in reply to mjrminor]

Thanks for replying. Sorry you had the same, how long did did it take for the breathing issues to get better? Hope you’re on a treatment that suits you now, ss

[mjrminor in reply to Sunnyseas]

It was a few years ago now, but I'm pretty sure the breathing issues stopped a few days after my final injection. I should have mentioned I also have asthma, and the methotrexate seemed to exacerbate that too. It was a shame because the mtx was starting to work on the RA. I had the same issue with Leflunomide. Now on sulfasalazine and hydroxychloroquine, which don't affect my breathing but don't control my RA completely. Swings and roundabouts I suppose.

[mjrminor in reply to Sunnyseas]

I hope you find something else that works. There are a few meds out there to try, so hopefully one will be your magic sauce.

[Flor1rence]

definitely get this checked out it maybe that MTX is not for you. good luck Sunnyseas 🍀

[Sunnyseas]

Spoke to my consultant and he’s taken me off mtx, no question, mentioned pneumonitis as a complication if breathing is affected. Dangerous stuff. I’m going back in hcq and am going to try some lifestyle changes, stress is definitely a trigger.

[Boxerlady in reply to Sunnyseas]

I'm glad to hear that your consultant has sorted it out to your satisfaction.

Just to mention that there are other medications out there so if Hydroxychloroquine and lifestyle tweaks aren't enough to control your symptoms, do go back to your consultant.

I've been lucky in that I haven't had any real problems with side effects but it was adding Sulfasalazine to my existing DMARDS (Methotrexate and Hydroxychloroquine) which produced notable improvements for me. Hopefully this experience won't put you off trying other medications in the future if you need them 😉

[Hidden]

I have been breathless since last year & as I have asthma I was given steroids to take. They always helped but this time they didn’t so it was assumed that it wasn’t asthma. In January I was sent for a chest X-ray & called in to see my doctor the following day. She told me there was fluid in my lungs & it was pulmonary Odema. She referred me to a respiratory consultant as urgent. I was told by them that there was an 18 week wait if it was urgent & 33 weeks for non urgent. My doctor tried to get it put forward as she thought I needed to be seen more quickly but couldn’t get anywhere. In the end I saw a specialist privately who said there was no fluid but lots of scarring & I was sent for a CT scan on Tuesday. My GP’s surgery rang yesterday & said there was nothing sinister found but a doctor would ring me to discuss it next Wednesday afternoon. I am totally puzzled because if there has been nothing found why am I so breathless & wheezing all the time & why do they want to ring me to discuss the results? I hope you find some answers soon sunnyseas.

[Biofreak]

Hi Sunnyseas. I had the same problem with methotrexate. I was on it for 4 months and I had a persistent cough and repeated chest infections resulting in 3 courses of antibiotics. The chest continued to be sore even after the antibiotics so rheumatologist told me to stop it. 2 weeks after stopping everything settled down but left me with asthma for which I now have an inhaler. It's well controlled however. Sounds like you may well not be able to tolerate it either.

[Sunnyseas]

Thanks for your reply Biofreak, I’m sorry you’re now on inhalers. I like your picture, I have a greyhound, ss

[Biofreak in reply to Sunnyseas]

Unfortunately my greyhound Poppy passed away in January 2020 but I have left her picture on my profile because it's a lovely reminder of my special friend. Greyhounds are lovely aren't they. Hope you feel better soon.

[Gitaga]

HiJust to say my sister also experienced the same symptoms whilst on MTX. Rheumy stopped her from taking it. Speak to your Rhemathologist asap.

[Jaxine]

Hi there

Speak to your consultant straight away, failing that your rhemy nurse. Same thing happened to me, difficulty in breathing, wheezy chest and a constant cough. I went to my doctors she examined me and arranged for me to have a chest xray. My consultant rang me up immediately with my chest results and told me to stop MTX straight away. I was put on 40 mg prednisone for 4 weeks! Mtx can cause (in very small percentage of people) a condition called pheumonitis, which is what I had!. Only effects 2% of people taking MTX. Good luck!

[Sunnyseas]

Thank you lovely people for your helpful replies.

The breathing has settled but I’ve had chest discomfort and felt very unwell for more than a week now. Chest x ray was normal and oxygen levels normal, consultant says not pneumonitis. GP has signed me off for another week as still not improving. Just said take pain killers. I didn’t expect this to go on so long, can mtx really mess you up for this long? ss