Week 3 methotrexate... shortness of breath.

So it’s week 3 of methotrexate and month 3 of being on hydroxychloroquine and sulphasalazine. I’ve noticed a pattern with the methotrexate. I take it Sunday night and sleep fine, then on waking I have a bad cough and feel a bit wheezy and a bit short of breath and very tired. By Tuesday it seems to clear. Breath improves, cough improves.

I would ask if that’s normal, but then nothing is normal on here so it’s probably a silly question!

22 Replies

  • Hi Jules

    MTX gives me a heavy feeling in front and back of chest overnight, like being compressed.

    It also gives me a cough and breathlessnesss, noticed if eg try to walk and talk or go up a short slope.

    If your symptoms appear only when on MTX, probably is the drug inducing them.

  • But you keep on taking them then? Your rheumy hasn’t said stop?

  • Due to other side effects there may be a change to another drug soon.

    Should see Rheumatology Specialist or Nurse late Dec.

    Not sure what will be recommended or advised.

  • Hmmm. That’s a bit rubbish.

  • Yes!

    Fact is, RD can irritate airways and lungs. In spite of a constant cough since changing to Metoject, they were unconcerned since the cough was not productive and did not worsen

    But, if I was a smoker they’d have sent me for x-ray. I did get checked at GP a couple of times when my chest felt worse but no signs of infection.

    Most Rheumatology staff still use swollen joints as an indicator of disease activity although arthritis is not the disease; RD is still present and active in the body when joints are calmer.

    It is clear from Rheumatoid Arthritis Unmasked (free book on kindle, by lady who set up rawarriors.com) that joints are the last place symptoms occur and are not the only indicators of active RD. The book cites a great many studies etc.

    It can be depressing reading but very informative.

  • You are so right Jules...nothing is "normal" with RD...but it sounds as if Mtx isn't causing any major problems for you. I'd mention it to your Rheumy nurse when you next speak....but it doesn't sound major.

    On the whole it sounds like things are settling down for you?

    Hope the house renovation is going well & that your c/htg is performing 100%!

    I just HATE this cold damp weather...it doesn't affect my RA...I just like hot weather!

  • The cold damp weather affects my osteo which then makes my RA feel worse.

    I just keep thinking... what if they have me on all these hideous drugs and it’s actually my osteo arthritis that’s still causing all the pain. I only got the tiredness, nausea etc. After they started me on all these pills.

  • I have both & Rheumy & your team will know the difference between RD & OA particularly in your hands as they're the joints most commonly affected in both conditions so will have compared them time & time again in the many patients that come through their doors. If you have significant changes like I have you'll see that the your inflamed finger joints are now more square & bony, RD inflammation is more boggy. They wouldn't be treating you for RD if they weren't sure you have it believe me. My hands are affected by OA not RD & they're weak as a result so I'm under Occupational Therapy who have given me exercises to strengthen them.

    The tests you had at diagnosis would have determined if you have RD or OA or both too so I wouldn't concern yourself, they know their Speciality. It is a common thought though, especially at the beginning of treatment, so you're not the first to question it don't worry.

  • Anything breathing related when on MTX should be reported Jules, so call your Rheumy nurse & let her know. I would think as it's only affecting you the one day & not all the time she'll either suggest you have an X-ray or continue on it if it doesn't carry on for more than just the one day. It could be something but it could also be nothing, the thing is it's best to be sure. I have history of lung problems (spontaneous pneumothorax) & can be a little wheezy at times but I've been able to remain on MTX so it's all very personal, whether if it's affecting you badly enough or not particularly if it's working for you otherwise.

    Tiredness is a common side effect with MTX, I still have it the day after I inject after all the time I've been on it, but then fatigue also is indicative of uncontrolled RD so it's deciding what's the cause. Your nurse will be able to determine though. The one thing you mustn't do is worry, it is all part of RD & it may just be something that's easily sorted. x

  • Also the pain in my hands has never ever gone away. It’s been over 3 months now. The only thing that has helped is the steroids but I hate them.

  • I reported everything to one of the nurses. And she said “well if you think it’s a problem then you need to go to a&e”. I said, “but that’s why I’m ringing you. To see what you think. If you think it’s nothing to worry about or if you think I should get the breathing thing checked out.” And she said it was up to me. Most most most unhelpful.

  • Most unhelpful & either shows lack of knowledge (which I can't believe) or caring of her patients on MTX which I'm positive she must have, or we she's in the wrong job, if we know she certainly does. If not & she either asks a colleague or brings up the info for MTX on her computer it's clear to see you're to report it. NHS choices says Less commonly, methotrexate can affect the lungs, so you'll usually have a chest X-ray and possibly breathing tests when you start taking it to provide a comparison if you develop shortness of breath or a persistent dry cough while taking it. But most people tolerate methotrexate.

    This is crazy, surely as they are the department who know most about the med they should be the team to make the decision about what should be done not your overstretched A&E. This is what the helpline is I feed for for goodness sake. Actually if you did turn up there the triage team would likely request the Rheumy dept's involvement anyhow so it makes sense to ask them directly & not delay & turn up there.

  • Yes I got that sort of answer when I spoke to one of the rheumy nurses recently. I usually get sensible advice but being told "It's up to you" was not good enough. I waited a day & got another nurse, who listened & said to see my GP for a check up (quicker than waiting for rheumy) if things didn't improve in a few days...they did....but at least I knew I didn't need to go to A&E!

    In fact I think we'd all know if our breathing was so bad we needed urgent attention.

  • I agree we know instinctively if breathing is so laboured or it's so urgent we need to attend A&E. I don't know about where you live but ours never has quiet periods but the few occasions we've had to attend whether by ambulance or not you're in for a very long wait, so much so by the time she'd be seen at ours her symptoms would have abated. The last time my h was taken by ambulance it was midnight after the paramedics decided after half an hour he needed to go A&E, he was still there at noon the following day until he was taken to the AMU.

  • This time last year I fell & fractured my radius.

    A friend dropped me off at A&E, but couldn't stay with me ....when I approached reception I was looked up & down & asked (by a clerk not a nurse) why I was there !I said I had fractured my radius & had concussion,....I was then asked how did I know?

    Dah! I held up my misshapen arm & was told to "wait over there"...which I did .....for three hours!

    When I went through to see the triage nurse nothing was going on...No staff & no patients.....I waited another hour for an X-ray to confirm the break, nobody was interested in the concussion,..which was later confirmed.

    I got plastered by a HCA....& went home...never saw a doctor in all the 5 hrs in total I was there.

    That was on a Saturday...I went back on the Monday morning to have the back slab removed,& said I would be seeing an Orthopaedic surgeon Privately & wouldn't take up any more of their time........they were not best pleased..but then neither was I ...it was like a third world country.The money I paid the private doctor was well spent......

    I dread ever having an accident & having to stay in that hospital ! I will never voluntarily go there again,

    I still can't believe they left an old lady, in pain with a broken arm waiting for three hours when they weren't busy,

  • It's terrible isn't it? Just as well you had the option of going private. The one that got me was when I went with my Dad, who was stick thin by this time as he had oesophageal cancer. They would have had him lie for 8 hours on a trolley with no mattress in a corridor had my h not helped him off it & into a chair, which we were told off about. I raised holy Cain after around 2 hours, "they were busy", a blind man on a flying horse could see that, but they knew full well his situation. Sorry to say once he was admitted he never came home. It was as if they'd lost all compassion.

  • So sorry to hear about your Dad.....I know A&E gets busy & they can't just magic up a bed..but these days nurses don't seem to have any compassion.

    When they were trained on the wards with timeout in study block, they got to know how to treat sick people. Now they go on the wards clutching their degree & knowing all the theory...but that's no darned good at 3am when a patient needs some TLC.

  • Oh crikey. That sounds awful.

  • Oh god. Awful.

  • Poor thing. I know how you feel left hanging by yourself when you need help. I think you should just go to the a&e. You know that the symptoms you are experiencing should always be taken seriously. I am sure they will be more understanding at a&e. Good luck and don't let this unhelpful nurse take you down. Simba

  • I agree with nomoreheels you should get this checked out any breathing problem when on MTX should be sorted, as for the nurse that said it’s up to you depends on how you feel she should be reported as you are asking for advice and it is very important you check this out good luck!

  • Hi

    I am on MTX.

    I was told by my Consultant that if I developed a persistent dry cough then I was to stop the MTX straightaway and go to my GP and get an x-ray.

    The Consultant also told me that it is more likely that breathing problems would appear in the early days of taking MTX. And that the breathing issues are very debilitating.

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