I recently spent 10 days in ICU on a ventilator due to Methotrexate Pneumonitis, a serious complication of MTX. I was diagnosed with pneumonia & every doctor got it wrong, was 1 day from being unplugged when student doc found the link, given massive steroid dose & recovered! I'm upset that my Rheumy never told me about this. I've had severe RA for 1 year, inject 25mg Mtx weekly & have been on several other DMARDS. My new specialist says I can never receive a biological because of my severe reaction. My only. Drug now is prednisone & I'm not well controlled. Please be careful with. Methotrexate, it can be lethal to your lungs!!!!!
Methotrexate can kill!: I recently spent 10 days in ICU... - NRAS
Methotrexate can kill!
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RAinCanada
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Wow, this just shows how we never should under estimate the power of these drugs, thank goodness that student was there!
How scary for you that is shocking....please you've got through this...and these drugs are scary for people like yourself who suffered this....I couldn't tolerate it..I felt like my body was becoming weaker and weaker every week I injected...I was very poorly on both tablets and injections...in fact I've tried all the dmards and I can't tolerate any...I'm on no medication at present...I'm waiting to see my consultant as to what step I take next...as I need to be on something....I feel better in myself not been on any drugs...even though my joints are swollen and painful...I do know alot of people who can tolerate methotrexate and other dmards and are fine...we all different...but hope you get sorted thinking of you xxx
Hi I also got pcp pneumonia from methotrexate, my consultant thought originally that I had a lung infection and told me to stop injecting and get some anti biotics from my doctor. I had a lung biopsy type of thing that showed it was pneumonia not an infection. I was told to go to hospital for admittance so they could give me special anti biotics and monitor me. I have restarted methotrexate again, but I have to take the special anti biotics whilst I am taking it.
Thanks for this. My GP is keen to put meon MTX like you I'm only on steroids having had no response to two other DMARDS. I was concerned regarding the side effects and have been arguing to go straight onto biologicd and I will argue that point when I see a new consultant in a few weeks time. Any drug like MTX which distorts your bodies DNA, makes you need a blood test every few weeks to check your kidneys can't be worth the risk on top of the reaction you had.
Side effects of biologics can be very serious as well, and don't work for everyone either so not a fail safe solution either. Sadly there's no easy answer for us and really it's about what works best for each of us.
Biologicals can cause cancer, tuberculosis, and other side effects. You have to get your blood monitored as well. All of the drugs lower our immune systems because we have an autoimmune disease.
It isn't really up to your consultant whether you take biologics or not, he can recommend you for them but the final decision is down to the NICE board, they have specific criteria and one is that you have tried and failed on at least two (possibly three I can't remember ) DMARDS. You might be lucky, my Rheumy pushed for biologics early on in my treatment but I still have to take MTX or I'm not allowed the biologic!
Last couple weeks i noticed some weazing sometimes when I take a deep breath. Started hot yoga last week went 3 dsys in a row and think it may have helped being in the hot dry room and breathing deeply. Will see the RA doc next week and added it to the list of things to talk about.
Hiya, I get that weazing and did put it down to MTX but I didnt realise how bad it could get. I'll have to watch that doesnt get worse. Bloody RA : ))
Yes lung problems are listed under warnings on the info sheet that comes w the drug, so I've tried to be conscious of any little thing that may seem not normal.
Mate did you get asthma ?I have been getting treated for asthma past 3 years .On methatrexate 12 years.Wondering if I stop will cheat get better 😣
Kindly also see reply (research references/ resource) at your original source post, Is Methatrexate killing me, Scotthejock: healthunlocked.com/nras/pos... 🙏 🌺 🍀 🌞
Hi pal noticed your respose on here to the guys question ,see its a few years but nothing lost .Did you get adthma ?i have bee on Metjatrexate for 12 years I no have asthma for the past 3 years but I am I'll all the time on my 8th dose of antibiotics .I have started doing research and came across this post .SOS still taking methatrexate .
What an awful experience for you. Can I just warn you of a possible side effect of
Prednisolone....OSTEOPOROSIS. I used to take it regularly for R.A. and suddenly,
could not move with 2 fractured vertebrae .I am now getting by on Humira.
Take care.
Prednisolone also encourage growth of cataracts on they eyes. Everything seems to have nasty side effects.
Mate did you get asthma ?I have been getting treated for asthma past 3 years .On methatrexate 12 years.Wondering if I stop will chest get better 😣
RA in canada, I'm so sorry to hear of your frightening experience. I hope you can find some way out of this. It's good to be aware of how we should take heed of serious reactions. However we should remember that many people do take this drug and it helps them a lot. I lived through unpleasant side effects and found that it did keep me going, protected the oa in my knees to boot. I've been very incapacitated without it.
I just think people should be reassured that it can be beneficial, but needs to be monitored.
Hi, this is interesting, as I had to go to the respiratory clinic back in January, and then again last week, I now have a partially collapsed lung and have to have further tests to discover how much damage has been done. I have been told " that the respiratory consultant will have to consult the the RA consultant " as I shouldn't be given biologics which I have been on until February this year when I was very ill with a severe lung infection. I have been on methotrexate for 20+ years. I will keep you posted. Take care in the meantime. X
hi so sorry you have been so ill hope you feel better soon I am so glad you posted this information about methotrexate my gut feeling tells me to stay clear of this drug ,
Bettyboop in reply to
Thanku so much for sharing this information hope you better soon x
in reply to
I got a rash with hydroxy and had a horrible reaction to sulphasalazine an hour after taking the first tablet and and know now that they are pushing me to take methotrexate. However, one of the effects of just one sulphasalazine left me with a slight wheeze and as an ex smoker who is prone to bronchitis my gut feeling is also to steer clear.
in reply to
I hope you feel better soon.
RAinCanada in reply to
Thanks, I'm great!
Recovered slowly- now 1 year on Actemra, good result- I agree to follow your gut, I was also an ex smoker and it is more guarded to give MTX with previous lung issues. Good luck to you
How scary! And thank goodness you made it though. Hope they find some way to control your RA soon. A good reminder tho' of how important it is to flag up odd symptoms to your doc, and keep an eye on anything that feels odd.
I was warned and recently devrloped breathing problem. Was dealt with immediately chest xray blood tesrs etc all clear. I know what to look for and as I am allergic to anti bs I have to be on the ball. Thanks for warning us x I was told any breathing issues always mention the methotrexate
Sorry to hear that. I had pneumonia because of mtx and was in hospital for a week on very strong intravenous antibiotics, it is really scary not being able to breathe - the problem is - what is the answer. I have psa not ra but symtoms are the same. I am still on mtx injections but my rheumy has lowered the dose from 20mg to 15mg which - so far, fingers crossed - I have been OK. My only advice is if you start to feel as though you are getting any wheezing or funny feelings in your chest go to the dr immediately and get antibiotics. i did last year and stopped a chest infection from developing into anything worse. All dmards affect your immune system so it is a problem but so is ra and psa so you have to weigh the pro's and con's. Some medication works for some people and not for others. I do feel for you, these diseases are horrible and we are between the devil and the deep blue sea, not knowing which way to go. I hope you find an answer that suits you and take care.
Hello everybody, I must be lucky, because MY RA team and my GP independently told me to be careful and come and see them when even a slight dry cough develops. I believe a lot of heath care professionals are aware of the possible effects on the respiratory system a reduced immune system can have due to RA drugs. The insurance companies certainly are! I believe that even with all the possible side effects, we are very lucky to have all these drugs. We should not be too alarmed about them, but inform ourselves and oblige RA teams and GP to do the same! Be a pain in their side. You suffer pain enough! Keep up the hope and positivity.
So glad you're on the mend now. The more shocking thing for me is not that methotrexate can have very severe side effects (something that was, I'm glad to say, made very clear to me when I went on it - but it's keeping my RA well controlled and I haven't suffered any, for which I'm VERY grateful!) but that none of the doctors picked up on the link for so long. That really is appalling and shows the lack of training around these types of drugs.
Sorry that you can't try a biologic now either - that's really awful - I'm not really sure of the logic there, but I dare say there is some!
Hi. I know where you're coming from as I too developed MTX induced pneumonitis. I had been taking it in tablet form for about two months when I started finding I was out of breath just from getting up out of a chair and walking just a step or two. I put up with it for a few days but then saw my GP practice nurse who just said " you haven't got an infection but see your GP soonest". As it happened I had an appointment with my rheumy nurse the next day. She was horrified by my appearance and immediately got me in to see my consultant who knew exactly what the problem was and put me on a course of steroids for three weeks and also anti biotics, just in case! Told me I would never be put back on MTX, for which I was eternally grateful as I was also suffering bad nausea as well. I couldn't even walk back to my car, so the nurses arranged for me to use a wheelchair and for a porter to go and get my car for me. Nothing was too much for them. While I was waiting my consultant rushed up to me and said he didn't realize quite how incapacitated I was and said he thought I should be admitted. I very
politely declined his offer and said just let's see how the steroids work. Fortunately within 3 or 4 days things were improving and within the three weeks of steroids I completely recovered. Fortunately, my doctor was on the ball and knew what this was, for which I'm eternally grateful.
I would like to add that my consultant informed me that I was the first patient he'd had with this problem, so I imagine it is fairly rare.
Carolyn
I too had lung problems with methotrexate even at a low dose of 10 mg a week. The first time it happened I became really breathless and could barely walk or even talk . I was seeing the rheumy anyway and initially they were good , chest x rays, antibiotics and steroids and taken off the mtx. It took about 8 weeks to clear up. They started me on it again, the same problems cropped up quite suddenly after about six weeks. I called the rheumy nurse who told me to see my gp and he gave me antibiotics , steroids and stop the mtx.
After another two months the rheumy nurse told me to start it again. I was dubious as I was certain the breathlessness was caused by the drugs. After about two weeks it started again but this time I just told them I was stopping the drug and would take steroids instead.
What amazed me was that they did not seem to believe that the severe breathlessness was caused by the drug. Even when the rheumy wrote a letter to my gp after my last review he said I had experienced breathlessness only once!
Fortunately my RA, cross fingers, has considerably decreased so I feel about 80% normal. Still have pain, still feel tired but so far ibuprofen has some effect. Not total but some. I feel so lucky to have some form of remission!
I'm so sorry to hear you went through all that. These medications are scary sometimes. I also take the methotrexate 15 mg a week. It's a good thing that student was there! I hope your recovery is fast and feel like yourself again soon. You will be in my thoughts. I hope you will post again and let us know how you're doing. I send you a warm hug xx
Hi RAinCanada,
Really sorry to hear of your awful reaction to methotrexate and thank you for sharing your experience on the community. While this is of course very scary, such reactions are rare and many people find the drugs successfully controls their disease, but your post is a reminder of how everyone responds so differently to the medications available to manage RA.
Anyone who is worried about the side effects of a drug they are going on to should discuss this with their health professional and you can always call our helpline or email helpline@nras.org.uk if you want more information on a drug. Our website also has lots if information about all things RA at nras.org.uk
Best wishes,
Ruth Grosart
NRAS Digital Media Coordinator and HU Admin
I am so sorry you became so ill. I also got pneumonia last winter while injecting MTX. The MTX did not cause the pneumonia, but all DMARDS lower your immunity and I apparently was not being as careful as I should be. As soon as doctor did chest X-Ray and saw I had pneumonia I was taken off MTX injections until I recovered. I was allowed to stay on Pred, but RA came on with a vengeance! I have since had very good results with MTX as far as helping with RA. I would hate to see you give up on MTX as it has made a big difference for me, but of course you have to do what you and your doctor think is right for you. Good luck to you in finding the meds that work best for you.
God bless and thanks for sharing...
Unfortunately RA itself can cause lung problems.
I had breathing problems, so I was put through a whole load of tests.
Was it RA related?
Was it MTX?
Was it Sjogren's?
None of these, just late onset asthma.
I had to have chest X rays before starting MTX. Now I know why!
sammiebabe70 in reply to
Im due to have a lung test before going onto MTX, i get breathless now as im a smoker, and trying to slow down on them, ive also started on Prednisolone im on day 2, am now worried about MTX after reading this blog x
The trouble is that RA itself can cause lung problems.
I had to have chest X rays before commencing MTX. We need to be well enough to take it!
I had breathing problems and after lots of tests they found I had asthma!
I am so sorry to hear about this. I'm so glad you were saved by the student doctor. Unfortunately, all the drugs we can take for this dreadful disease can have serious complications, but so does the disease itself. There will always be people like yourself who are in that percentage that get the bad reactions to the drug.We just have to monitor our own bodies and be aware.
Hi there
I was horrified to read your story. Methotrexate put me into the resus room, really thought my time had come. I was taking 20mg weekly by tablet.I have never been so scared in my life. What puzzles me is that I was then put onto anti-tnf. Now I'm on the third and final one. Had some awful side effects,but none as bad as the methotrexate. I think mine may have been an allergic reaction, but it has done some serious damage to my lungs which are not reversible. Methotrexate is not licensed for treatment of RA. It really should be stopped being given for RA & PsA, which I have, had the risks been properly explained I would have refused that option.
I most sincerely hope you make a speedy recovery.and was so sorry to hear of another having lung problems.
Sorry to hear of your problems & hope you are feeling as well as you can be. I have a question. What evidence do you have to say that Methotrexate is not licensed for treatment of RA?
Your consultant will confirm this., Originally it was developed as a chemotherapy agent for cancer patients, who would receive doses between 500mg to 750 mg. By accident it was found at a low dose to be useful for treating RA & PsA. The leaflet issued with the drug will state it can be used for treating your RA, what it does not tell you is that only a consultant can ADVISE it, but at your own risk as you have agreed to taking it, in full knowledge of the fact that it is not actually licensed for RA & PsA. That way there is no come back on the hospital or Consultant, a great way to avoid litigation. Hope this helps! I looked this up years ago in my local library before I joined the rest of the world and went online. I know a lot of people get immense relief from this drug, I would be grateful to see a less harmful alternative. NICE state you have to have tried it before trying an anti-TNF drug. How would they think if they suffered the way we do? Interesting thought!
This concerned me as I was given no such information either in Spain, when first diagnosed, or in UK where I'm now being treated. In the interim I've done some searching & found that both tablets & injections ARE licensed for treatment of RA. mhra.gov.uk site gives more information. I have been treated for another condition where I had to sign a disclaimer, which would surely have been the case with methotrexate if it was not licensed?
Clearly the treatment modality has been updated to approve a license. I had to sign a disclaimer six years ago, and have been given a copy. NICE says everybody has to have tried Methotrexate(because it is incredibly cheap), before you can be approved for anti-TNF which are horrendously expensive. Thankfully there is a awful lot of research and development of new drugs and particularly to replace methotrexate, which as we all know can be very problematic. I hope something comes along soon.
I agree Methotrexate in tablet form is cheap. I can only quote in Euros as that is my only experience of actual cost: 50 tablets (just under 2 months prescription for my dosage) costs 38 cents, 1 injection costs 27 Euros, not exactly cheap. I can't comment on anti-TNF drugs as very thankfully it is not considered I need them, mainly because my DAS score falls short because the worst of my RA is in my feet & not included. Of course, anti-TNF's are not without serious risks & unknown long term side effects, but then we have a serious disease being treated with serious drugs. We can't win whichever route is taken can we?!
My RA has been very well controlled on Methotrexate & all bloods & x-rays confirm this. Whilst it's very unfortunate when someone has a severe reaction they are in the minority. There are countless others who are glad of this drug. I do know from personal experience it's frightening when the lungs are compromised as I have had issues in the past which my Consultants have been aware of & as such close control is taken. I was aware it was initially used for cancer patients & indeed abortion in far higher doses but I know I'd rather be living my life with it than without it. A year ago through no choice of my own I had 3 months without it & was back to square one. I don't want to go there again. So until an alternative is found to be as efficient at controlling my RA I will continue to take it as long as I have my Consultants blessing.
I hope you have no further issues with your lungs & remain in as good health as you can be.
Wow, I'm surprised by all the responses to my post, what a great community. I'm now 2 months past the ICU experience, off oxygen but so badly flared in all extremities. I know my reaction was rare, stats say 3-10% of MTX pts have this reaction, biggest issue for me is lack of Medical Education in recognizing it. I live in a city of 100,000, not one of the physicians I saw clicked that my "pneumonia" was MTX allergic reaction. I appreciate that many have been helped by this drug, my only hope is education, that all taking it will watch for shortness of breath & physician education will improve. I'm grateful we had a keen Resident Physician who did the research. Thanks everyone for your kind words. I'd love to know if anyone is having success with herbal supplements like Moringa or Boswellia
Hello RainCanada and everyone here,
I'm having lung problems at the moment and had to travel a few miles to see an out of hours doctor yesterday (it would happen on Easter bank holiday). Anyway, the doctor prescribed antibiotics until I see my own GP on Tuesday, hopefully.
I've been on 22.5mgs of MTX for three years now, along with anti-tnf Enbrel injection and apart from MTX causing a few tummy disturbances from time to time, everything has been OK.
I read all the literature I was provided with before starting both treatments and although the side effects don't make pretty reading, I was desperate, like all of you I'm sure, for some relief from symptoms of RA.
I'm so sorry that you have suffered so badly RainCanada, but glad that you lived to tell us your story, although having some breathing problems myself right now, I was rather alarmed when I came across your post yesterday. But common sense prevails and it is not a bad thing to be made aware of the side effects from time to time.
My husband is a dialysis patient and attends a local clinic 3 times a week. Obviously he comes into contact with some very sick people like himself and there is always some bug or other circulating. He was unlucky enough to pick up this bug (whatever it is) and passed it on to me this week and being open to infection it has affected my chest badly. With my Temperature soaring yesterday and painful difficult breathing, reading your blog encouraged me to call 111 and get myself checked out. So, I'm thankful for that.
In my view Methotrexate and other treatments for RA and associated illnesses are serious drugs which most of us would prefer not to be taking. But, what is the alternative I ask? Terrible distorted hands, knees, feet and all other joints, besides the internal problems. I used to look after people years ago who were crippled up with RA and never in my wildest imagination did I consider that I would suffer the same fete in my later life.
Apart from the drugs, we have this site and are able to learn from and comfort each other, which is much more than those people had twenty odd years ago.
I wish everyone a nice Easter Sunday with not too much discomfort and I hope my damned temperature goes down today and my chest feels easier 
June xx
P.S sorry RAinCanada, I spelled your title wrongly 
Hi sorry to hear of your ordeal. I am concerned that some may read your post and be absolutely terrified of taking MTX- the gold standard treatment for RA. You state you have been on several other DMARDS - yet only diagnosed a year ago . You also warn against biologics, yet you do not state which one you were given. To those who have read this and are very worried about treatment there are thousands of people out here who take these drugs with amazing life changing improvements and have been doing so for years in some instances. I hope you find a drug that is suitable and can find a solution
Sal
nomoreheels in reply to
I also was concerned re this post & particularly the header. I did actually start a reply & when re-reading it decided to delete (sometimes best when I've got a bee in my bonnet about something nowadays!). My first thought was for those with this blasted condition who don't have the support & layman's knowledge some of us do & also the newly diagnosed trying to make decisions on drugs they aren't clued up on. Taking in that you have a life changing condition is difficult enough when you're first diagnosed. As you say there are thousands of people on these drugs who are so grateful for their efficacy, myself included. I am fortunate insomuch as I'm generally tolerant to the medication I have been prescribed & do appreciate how fortunate RAinCanada was after such a scare but these side effects are rare in comparison.
in reply to
Hi Sunshine Sal, I have to thank you for raising this point, I saw this post and felt quite alarmed but didn't want to comment for fear of stirring up trouble... which I can assure you I have no intention of...BUT this is quite alarming, I'm fully aware of how awful Methotrexate can be having been on it myself and doing quite well until my body decided to reject it, I have also been on three DMARDS even though I was only diagnosed not ago but I'm just concerned that a Post title like this could really alarm people especially those of us new to RA and the DMARDS whilst never taking away the awful ordeal RAinCanada has been through.
sammiebabe70 in reply to
I started off on Hydroxy, then Sulfasalazine, now im being switched to Methotrexate, i am so worried atm, im due to have a lung test, i get breathless now what with smoking, but am trying to cut down, This lady had a bad experince but after reading some posts that Methotrexate helps alot of people, im slightly relieved, but am still scared
RAinCanada in reply to
Hi Sunshine Sal. Upon diagnosis I was started on Plaquenil, Sulfasalazine, Methotrexate & prednisone as I had 38 involved joints when I saw my Rheumy. Taken off plaque nil & SSS after 5 months due to active disease, took leflunomide for 6 months also. I did not say I was against biologics, it was the opinion of my ICU specialist that I would likely have problems with biologics. Sorry if I wasn't clear, trying to be brief. Also DO NOT want to scare anyone by my headline, was not my intention.
As far as I can tell no one here has mentioned that it is important to have the pneumococcal vaccine for people taking MTX. I don't know how much protection it gives but my GP insisted I had it and it lasts for ten years.
No I don't get ill very much at all (overactive immune system) and was rather unsure. But my sister had pneumonia at the start of last summer so it was in my mind when my GP almost shoved it at me saying that everyone on MTX should have the vaccine as well as the annual flu jab. Perhaps it is just the practice policy but I'm sure I have read posts about it on here and many people do get it. My husband's cousin has RA and got pneumonitis from MTX but she never had the vaccine either. Strange? Actually the more I think about it the more shocked I am that not everyone who goes on immune suppressant drugs is advised to have this vaccine - I was sure it was just routinely given. I suggest people ask their GPs to have it if you read this thread. It may help to put your minds at rest.
If it is just down to my practice then I'm very grateful to them for it but I suspect, from also searching on this site, that quite a few people on MTX and other DMARDs are offered it as a matter of course. Good luck with your GP - think of this thread and stand firm!
Interesting reading all the above posts. I was in hospital a couple of years ago and agree it is frightening not being able to breath. However, I am presently feeling signs of Hay Fever which I have not had for many years and feeling 'blocked up'. Also on Methotrexate, Sulfazalazine and Cimzia.
Hi RAinCanada.I also had pneumonitis caused by the methotrexate last year. Got very breathless in Sept doing even the most trivial tasks and walking was a no no. Really thought my heart was playing up. However, Cat scan showed the problem, taken off MTX immediately and I will never go back on it, given steroids which cleared it up within a couple of months and fine now.
Now just had my two infusions of Rituximab. Hoping it will work fairly quickly. Hope you are now feeling better. LavendarLady x
Thank you Lavendar Lady for the kind words, I'm now off oxygen support and doing well 2 months post. My RA is really aggressive right now, on 25mg daily prednisone, waiting to see new Rheumy and hope I can try a biologic, thanks for the encouragement!!
Do hope you get some extra help. Let us know how you get on. Love LL x
Oh my goodness what a story. Thank god you survived. Also thank you for warning me. Take care.
Hi Sharon 56.Thanks for your kind words, I have had my Pulmonary Function Tests done and I do have some permanent damage due to the Methotrexate. I have seen my new Rheumy. She feels I am a candidate for Actemra as it can be given as a stand alone. I'm doing my research and see her again in 2 weeks. I remain hopeful...........
You are supposed to have a chest X Ray before they start you on Methotrexate and regular assessments need to be undertaken. Further RA nurse or RA Specialists need to watch what is going on and pick up problems that can be caused by DMARD medications. Generally as well bloods need to be given to watch how you are getting on
Good Luck
BOB
You are supposed to have a chest X Ray before they start you on Methotrexate and regular assessments need to be undertaken. Further RA nurse or RA Specialists need to watch what is going on and pick up problems that can be caused by DMARD medications. Generally as well bloods need to be given to watch how you are getting on
Good Luck
BOB
Well this is scary. My doctor did tell me that methotrexate is lethal if you take it more than one time a week but I had no idea there were other risks to worry about. I sure hope you are doing better now and found a good doctor.
Hi;
I was on methotrexate for 1 year before it did me in,,,, I was very sick after each injection( I gave it myself subQ) then suddenly had rapid onset respiratory failure so it was a weird response.... thanks for your kind words, yes I have a new Rheumatologist and on Actemra infusions x 1 year, doing well. Good luck to you.!!!
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