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Methotrexate Problem

Been having flu systems with coughing for a couple of years now,been told by GPS it'd been a virus, we have now taken on a new lady GP who is sending me for a CT scan as she thinks one of my lungs is not working correctly,and she thinks the problem is from my methotrexate 6 per week (15mg) is this possible

Colin

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Hi Colin. A couple of things spring to mind. I know before I started treatment I got xrays and blood tests to see if I was well enough to start the treatment. I assume yours were all ok so they started your mtx.

Next yes one of the side effects if you look up mtx side effects on nhs website can be lung fibrosis. However it may be something or nothing!

But until you get the information from your tests it may be from a virus or something else, we do tend to blame our RA at times. If it is the mtx then they will obviously change it for you.

I hope you get the info you need soon. Do look up mtx on the NRAS or NHS website for more information or the NRAS helpline is brilliant for support. Xx

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Hi Allanah.Yes I did all the tests before x-ray and blood tests, they tried me on a couple of DMARDS first before going on MTX

Colin

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Good luck with your scan xxxx

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Allanah Have you had problems with MTX or Lung problems

Colin

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Hi. Personally I could not tolerate mtx due to nausea so my doc changed me onto another smart. I do know some people will obviously get the known site effects but for a large proportion Mtx is fantastic treatment x

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Allanah Do you know anyone on mtx that's had lung damage due to mtx,I would be very grateful if you could give me some advice on this one if you could,as I am terrified with hospitals

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Hi Shambles. Well I defo would talk to your nurses and support groups and the people scanning you as honestly they will get you through the scan. I've had one and it was actually ok.

As yo whether or not the mtx has had side effects on you you will have to wait to see I'm afraid and worrying about it in advance will just wear you out. Let's just hope it's a virus! Lung scarring can be very mild and they would swap your drugs so not all is lost honestly.

I remember reading about a drug I was on for heart and the side effect was death!!!!! Seriously....You could only laugh and put your trust in the hospital. I had It and And here to tell the tale.

Ps if you don't control the RA it can cause problems of course...so patience, calm, talk to hospital staff , talk to your rheumy or NRAS helpline and keep us up.to date please Xx Xx

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Not sure my chest consultant would agree with the link between mtx and fibrosis. He advised me to stop taking mtx because it can cause a certain lung condition that can mask hence affect the monitoring of my fibrosis. I didn't think to ask what lung condition mtx can cause, but my understanding is that my fibrosis was caused by inflammation from my RA getting into my lungs and not due to any meds.

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Hi wishbone, I should have made the length if time more clear,I should have said for the last two years i have had symptoms like much like chest infection or flu and heavy cold,bear in mind I have had in the last two years i have had flu jabs,last year I had over 70 years old jab that was supposed be more stronger

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I would have thought that you still should have been sent for an x-ray. At least your new GP is getting you scanned which should show any nasties if they exist. Here's hoping it's nothing serious.

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Think the link was merely side effects of Mrs on the nhs website. I do think it is important that shambles gets the investigations to see if there is a problem or not x

I'm no consultant of course was just quoting websites.

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It's not the first time I've heard it said that mtx can cause fibrosis. I can but quote what my consultant said, which does seem to fit as I believe I can put a finger on exactly when my fibrosis started. It was during a godawful RA flare that lasted many weeks.

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Shambles. You need further investigation. Coughing for two years? Like Allan says, fibrosis as a side-effect or chronic bacterial infection and abscesses? Is there an allergic component? Even a tumour for heaven's sake! Sorry but insist on further tests until you have a definitive diagnosis. Blood tests; sputum samples, biopsies or radiographs could all be useful. Good luck.

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Hawker955 I have had coughing periodical every winter which was diagnosed as a virus, I have had a sputum on the 27/12/18 but I have not heared anything about that yet,I walk my dogs Everyday so when this came onto me it knocked me out

Colin

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I'm sure it's a shock but let's get the info first ...then whatever treatment or drug change you need!!

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A virus lasting a couple of years and no further investigations......the mind boggles! :-O

By the sound of things you don't appear to be getting short of breath with mild exertion, which can only be a good thing with regard to fibrosis. Also, are you bringing up any mucus or phlegm when you cough?

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Yes been bringing up yellow mucus and clear mucus,phlegm,runny eyes,and runny nose and 4 boxes Kleenx,also had a xray

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Obviously I'm no doctor, but from my experience, shortness of breath does seem to be the more important indicator regarding fibrosis.

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I have a condition called Cylindrical Bronchectastsis also immune and not detectable except by ct scan. I had a cough similiar type of thing 9 chest xrays so many antibiotics but none would work and it took a hospital respiritory consultant to work out the proper one. Now have as a rescue pack in the cupboard so I'd suggest asking for a sputum test and an appointment to see a specialist. The CB is controlable just have to be careful to keep chest clear by breathing and coughing practices. I kid you not I've had coughing lessons and they work too also done lung gym and really importanty to stay hydrated as lungs first thing todry out and thats when the germs get in. Best of luck .

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My new lady Dr picked it up on a check on my back,she said there was some crackling on the bottom of my lungs,so I have had a x-ray blood test (not got back yet)a sputum,and just to jot down,not smoked for 16 years

Colin

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Could just be a crackle from a virus. She's being safe with you bring on drugs! Keep warm ! See what the scan says xxx hugs x

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It does sound like a virus with his runny eyes and nose. When I was taking mtx I had a runny nose for much of the time I was on it.

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And the cough

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Like allanah said, that could also be linked to a virus, then again perhaps not. All you can do is wait for your test results. I've been in the same position as you currently are so have a good idea how you feel. No hugs and xxx from me though.. I'm a bloke and don't do all that girly stuff! :-)

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Hugs and Xx Wishbone lol !!! ( girly stuff).

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My crazy sister-in-law tried to hug and kiss me on christmas day (any excuse!), despite my RA I still managed to avoid her with a deft side-step...tis surprising what physical fetes one can attain when the adrenaline is in full flow! She tried a second time but soon backed off when I threatened her with a death chop! :-)

So be warned all you huggy xxx females out there as I ain't having none of it...period! The same goes for any huggy xxx males too! ;-)

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🤣🤣

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I have the crackle too, its now a waiting game but don't give up if nothing on xray ask about the CB as its now thought to be more common just not easily detectable. I had the cough for a year before it was found. It kicked off by a cruise hottub and the infection from hell.

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Hi. What is the CB

Cheers

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A distortion of the brochonical tubes in the lungs. They are smooth not ridged its the same gene as Cystic Fibrosis but not turned on. I had a test as have children. It just meand infections more likely and need to have antibiotics asap hence now have them in the kitchen cupboard. Worth asking your GP about really. I've had proper lung tests in the hospital lab as well as the ct scan.

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Thanks Allanah.

Xx

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Xx 🤣

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I have stopped my methotrexate immediately. Same symptoms as yours. hospital said methotrexate side effects can destroy your lungs.

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Many thanks for your reply,just been a walk with both my dogs with no puffing

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Hi, I have been on methotrexate for 26 years, at varying levels, 20mg max for many years. I had a cough most of the time and routine scans showed some scarring of the lungs, but consultant said it could be the mtx or the ra causing it, but not serious. I voluntarily reduced my dose gradually to 10mg and the cough has gone, together with the breathlessness I experienced when doing anything leaning forward, like filling the washing machine. My ra seems less under control than it was, unfortunately, but I think sometimes you have to find a balance.

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Many thanks for your reply

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Interesting! Did the consultant not monitor your scarring with lung function tests, at least for the first couple of years?

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I never seen the consultant for the first year just one of his team and never had any lung function tests

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I did not have a lung function test until abnormalities were discovered during a routine chest x-ray to start mtx. I was then referred to a chest consultant who required a MRI scan and a lung function test prior to seeing him.

edit...it was a CT not a MRI scan.

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Sorry, I expressed myself badly - the cough only became apparent at the higher doses - I did not make the connection at first and, no, nobody monitored me for anything much in the early years.

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Could be because your scarring is only mild so your docs are not too concerned about it progressing. Unfortunately I think mine might be a bit more serious, plus I have a nodule that also needed keeping an eye on for the first year or so, hence the monitoring, which would have stopped last June as fibrosis is untreatable so nothing can be done about it. If it wasn't down to me telling my consultant that I'd soon be starting a new med (baricitinib) for my RA, which just so happens to be showing some promise in treating COPD, then he would have discharged me last June but didn't because he is interested to see if it has a positive effect on my fibrosis. Not very scientific I know, but there you go. Just hope he has a 'eurika' moment when he sees me again in June. :-)

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Hello Shambles. I had a similar experience with methotrexate. Mine began with chest infections in succesion followed by a persistent cough. I was given antibiotics but the coughing continued. A new gp whose specialism was ear nose and throat said he had seen this many times with methotrexate users. He stopped the methotrexate and gave me a course of prednisone tablets and an inhaler ( symbicort) and another( beclametisone). He said the reason i was still coughing was because my chest was inflamed and the treatment he gave me got rid of the inflammation and the cough stopped altogether within 2 weeks. Following this rheumatology decided i couldnt tolerate methotrexate and put me on etanercept. Hope you get an answer with your tests. At least its moving forward. Best wishes.

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That is spot on mine,especially the coughing,my first attack of this was about two years,I went down with what I thought was a chest Infection,it went on from October until Febuary and a Christmas ruined

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Shambles10944

Hi, I've had methotrexate for about 3 years but have have now been taken off it as it lowers the immune system and will therefore make me susceptible to chest infections etc.

Like all meds there are always side effects what you are experiencing could be one of these. Methotrexate is used for many other ailments but can be a vicious med and often does not mix with other meds without there being a reaction.

Do the tests and take the scans etc but if there is a problem within the lung expect to be taken off methotrexate and put on a more traditional med for lungs. Good luck with it all.

IKeith

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Many thanks Keith.

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Hi Colin. I have had a cough for 2 1/2 years, but not flu like symptoms. I eventually saw a respiratory consultant in October and a CT scan in November and breathing tests also. I have shortness of breath when I walk, but I am also in terrible pain from severe spinal stenosis which doesn't help. The consultant decided the cough was from my Hiatus hernia and prescribed Gaviscon, this helps to a degree. He ordered the ct scan to check the lung scaring that showed up on my 2016 CT this was my left lobe. The 2016 scan was ordered by rheumy after two X-Ray's showed a white opacity and a nodule. It came to light I had this a year earlier from when I went to A&E with severe chest pains that turned our to be costochondritus, but not considerd a problem. I don't get the results until the 25th Feb as the consultant is currently away. I do know from asking my physio that I have some fibrosis, but to what extent I don't know. I started mtx 2 years last August. My rheumy believes my lung problems are RD related. I have had RD 33 years. It's best for you to wait till you get your results too. X

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Thanks for your reply,it is a very good help,could you tell me what does RD stand for

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Rheumatoid disease, some of us prefer to call it that and not rheumatoid arthritis. I also have osteoarthritis. Just a by the way I have never smoked, but because of my age was subject to passive smoking for years. I also have crackles in the base of my lungs. Keep in touch. X

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Thanks for your reply,I will keep in touch with you

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