I’ve been on mtx since Jan, and Leflunomide since April for PsA. In combination they’ve done a lot to ease things, although I’m still not fully under control yet. I’ve got a review appt with my rheumy on the 8th, but having said on here that I don’t really get side effects from the meds, I’m wondering if that’s actually true or if there’s potentially something else at play.
For the last month, I noticed my nose has been almost constantly stuffy, and my constant, long-standing post nasal drip is worse than ever. Someone mentioned a stuffy nose on here last week, and when I went off and diligently looked it up after that, sure enough, Lef is probably the culprit on that one. Thing is, I’ve been attributing an insidious, mild breathlessness for the last month or so to the stuffy nose/PND and a general decrease in conditioning as a result of lockdown. I slowly became aware over a couple of weeks of feeling more aware of my breathing generally, and although the rate is fine, I do still feel like I’m unexpectedly short of breath at times with minimal exertion, and when I went out for a first run in months recently, I was a helluva lot more breathless than I’m used to. Again, though, I initially put that down to lack of conditioning, but I’m also finding I’m suddenly coughing a lot post exercise and actually woke with a slight wheeze this morning. I’ve not got a cough per se, but I’ve been throat clearing a fair bit for the last month (again, I put it down to the increased PND), and when I do cough a handful of times each day it’s productive, although I can’t actually get the sputum up to see colour/consistency. The real worry factor, however, is that I worked out this morning, pretty hard, and after 20 minutes of trying to recover, my sats were 94%. They are currently still 94% some 3 hours later, although I can get them up to 96% with slow, overly deep breathing. I’m well aware this is within normal (my daughter has a life-limiting respiratory condition), but it’s not normal for me, and I’m beginning to wonder if the drugs are causing respiratory issues or this is potentially the start of yet another medical journey. I have no obvious signs of infection. I am an ex smoker, having smoked heavily for about 12 years. I quit 5 years ago via vape, and gave up the vape about 2 years back.
Can anyone here give me any firsthand experiences of RD/RD medication related lung problems? Obviously I’m going to bring it up at the review and get a medical opinion, and there’s every chance it may be completely unrelated, but I just wanted to see what the feedback is here, too.
Hello Charlie_G. Well done for giving up the fags - I'm an ex-smoker too!
I have to admit that MTX didn't suit me (nor did hydroxychloroquine and sulfasalazine either) and I did have breathlessness, chest infections and ended up with a partially collapsed lung. My consultant stopped the MTX and I was switched to a biologic drug which has been a game changer for me.
You may not have had an infection yet and I hope you don't get one but it is worth mentioning the breathlessness and your concerns to your doctor. If your next review is a long way off I suggest you contact your specialist nurse or the patient helpline.
Breathlessness is always something to raise with your medical team.
I am ex-smoker with long history of lung problems including TB and have been on MTX for 10 years. I developed breathlessness a while back and to cut a long story short it has turned out to be lack of condition. Investigated very, very thoroughly, and yes I have minor heart and lung issues, but the overall conclusion was heart fitness was the main cause. Started cardiac rehabilitation programme 2 weeks before lockdown, and have been trying to continue with cardiac exercise during lockdown but not as intense, so only small change so far. You don’t say how old you are, but over 40 you can loose fitness fast.
So quite possibly yours is nothing more as well, especially being on drugs for such a short time, but get it checked out.
Thanks for the reply. I’m 36, healthy weight due to good diet and regular exercise (used to be morbidly obese) but I’ve been more limited for cardio over the last 12 months or so due to the arthritis. I have been working out at home, though, using a stepper, aerobics, body weight exercises like modified push ups, weights and resistance bands. I also have long-standing SVT which I take meds for, but I’m finding atm that alongside this lower than normal sats issue, my hr is 59 at rest (low for me tbh), and then shoots up above 110 walking to the kettle. Pretty sure it’s not supposed to do that whilst on calcium channel inhibitors! 👀🤦♂️ I’m going to brave doing some cardio today and pause at regular intervals to see what both my heart and sats are doing. I’ll stop if I find either are doing things they really shouldn’t be and get immediate medical advice, otherwise I’ll hold fire to speak to rheum at my review. Would be nice if my body wasn’t determined to break down at every given opportunity though...😂
MTX did for my lungs [down to 70% function] [see backstory] but after 6 months off it and mainly in w/chair got back to swimming 5 days wkly, way b4 lock-in and sang lots round the house.. now back to 93-95% function - MTX is the gold standard for many tho', so hope it's not that, best 2u and yrs x
Sorry you are finding yourself with these issues. My previous respiratory consultant was adamant that if you’re going to get a MTX related issue or sensitivity with your lungs, it’s most likely to show up soon after you’ve started it. I’ve had other doctors who disagree and say it can happen at any time.
Prior to starting, did you have a baseline chest x-ray, lung function tests and TB test? I know you’ve been on the meds a few months and obviously not all NHS services are running as usual due to Covid but it makes sense to probably get a baseline on how you are now.
Well look at that familiar face 😊 Sorry to see you here as well as over there.
I’ve had a bit of a proper read since I posted (It’s pretty stupid, but I’m far less likely to do so when it’s me rather than the child) and most places say mtx driven pneumonitis will present within the first year of treatment. It does seem to be more of an acute presentation than whatever this is, though, and usually with some degree of feeling unwell. I don’t feel any more I’ll than I usually do 🤷♂️ The mtx overall is 6 months, with a dose increase at month 3 ish, but it’s only been since the lef was added 2.5 months ago that I’ve noticed anything amiss, and whatever it is, it has crept up on me incredibly slowly. There is some suggestion that lef may also cause respiratory issues, but not with the same evidence base or frequency that mtx is known to. As for baseline testing, I have a vague memory of a chest x-ray quite a few years back (although no idea what for), but otherwise no respiratory testing at all in my life to date. I have always said I wanted to try spirometry, though, both purely out of curiosity as to my own numbers and to better understand what Bod goes through: I’m guessing I may well get the chance now 🤦♂️My sats have been a lot better today than the last couple of days, but still occasionally dropping down to 93/94 whilst sitting on my bum doing nothing. I was going to do an exercise experiment to see if they were dropping even further under ‘duress’ but fatigue has knocked that one on the head.
You may see a few of us on both places as unfortunately, autoimmune disease, their meds and our lungs are all interlinked - as you have found out. I am trying to recall if I had spirometry and a chest x-ray prior to starting MTX which was over a decade ago, or biologics. I’m certain they should be at least proving a clear chest X-ray before MTX.
Ahh don’t push yourself too much with exercise, it’s not worth upsetting the delicate balance. It’s been very hot and muggy, which I think makes fatigue worse.
I was on lefllunamide for months great when it first started but after that my breathing was deaply effected my rheumy would have none of it rŕfen ljthoough methotrexate started the bad breathing etc it wasnt until.i.kicked up she tool me off it am now on.Tocifitnab but all ghe damagd has bèen done
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