Methotrexate side-effects - Lung damage?!: Hi guys, I... - NRAS

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Methotrexate side-effects - Lung damage?!

Hi guys,

I've experienced the 'usual' side-effects with Methotrexate in the past two weeks: tummy issues... Mouth sores and fatigue. However since an hour I'm experiencing more severe side-effects: difficulty breathing, shortness of breath, palpitations, severe dizziness and cough. The leaflet says to report these ones as they are associated with lung damage...

I have emailed my specialist although she's away on holiday...

Did any of you have the breathing and cough issues on this drug? And what did you do...? Did you report it?

I have to say I'm not stranger to these side-effects... :( I get these with the Pill and many other meds such as strong anti-inflammatories. x

50 Replies
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Unfortunately I did nothing but it was a big mistake. See your GP straight away if you’re breathless or having breathing difficulties or ring 111.

Please don’t hesitate.

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Oh dear .. :( Sorry to hear. What happened...?

I have emailed the PA of my Rheumatologist as she's away until September! I hope she'll reply soon.. she will still pick up emails. x

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Don’t wait for her to reply please call 111 or see your GP.

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Will call the GP and see what they say xx

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Good idea.

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Hi regina79

As you don't have an NHS rheumy helpline maybe you should call your GP or 111 for advice? that's what I would do. Hope you're ok, sounds scary 😟

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thank you! I have emailed the PA of my private Rheum. so I'm now waiting..

I took my second dose of Methotrexate on Friday but getting late side-effects only now. And I'm due to take my third week dose in two days so I need to know if I should carry on or not..

not sure there is anything they can do now. But just maybe don't take it again xx

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Call your GP ASAP...I wouldn’t take any more Mtx if I were you until you have had medical advice from somebody who know s your clinical condition.

Shortness of breath can quickly become very serious.

Don’t wait....CALL NOW!

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If you still have severe palpitations and breathlessness then call 111. Or do you get anxiety attacks that feel a bit the same?

Anyway, I would try not to worry about long term damage to your lungs as after only two 7.5mg doses that would be very, very, very unusual. Concentrate on getting the current symptoms sorted.

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It seems to have calmed down now but it did last nearly an hour, the dizziness and shortness of breath. It's not the first time I get it. I got it with other anti-inflammatories..

It could be that the palpitations came when I realised I couldn't breath! hence I felt anxious. My chest doesn't hurt so that's good I guess..

Yes I know, it's way too early but I thought I'd ask if any of you had the same and what they did. I thought I'd report it to my specialist anyway.. just to be sure.

I felt not much pain today, specially in my hip!! x

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You’ve just started MTX? It may be you do not tolerate it but you will be prone to infection and please be careful. Please do not mess around with your chest and your breathing. It’s not worth it. Better to be safe than sorry.

Did they do any lung function tests or chest X-rays before you started MTX? x

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Hi, thanks for advice. Yes they did a chest x-ray weeks before starting MTX. I’m going for blood tests on Thursday so I guess we can see if any values have raised etc.

I’m just allergic to a lot of medications so I get these sort of reactions often but today it was a bit worse then normal. X

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Please do be careful, even more so, given your allergies. It must be worrying. Take care x

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Have you looked at the ingredients of the tablets? it could be due to something in them that you could be allergic to? e.g Lactose

Just a thought.

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Have you been taking steroids? Could be your BP. Mine went sky high with the steroids and I had same as you. Now sorted thankfully as been off the little darlings for 9 months now. Ring your GP and perhaps have BP test to rule that out.

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I've just taken my 3rd lot of MTX , when I last down in bed I feel a very heavy chest, breathing is much more shallow also in the morning but it wears off as the day goes on ? Had a tiny bit of (yuk) flem this morning , . I'm scared on these tablets I hate them and the possible side effects, my scalp also feels very warm without touching it , I'm so scared I will loose hair , can anyone say how long it took to notice changes in hair please ???

Thank you HELP 😚😊

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Mine started to fall out quite soon after I started and then progressed quickly when they upped my dose. After 6 months I’ve had to come off it and now I just have to wait for the shedding to stop. I didn’t have a warm scalp and you may not lose hair. Try not to worry as this will make things worse. This side effect is one of the lower risk ones.

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Oh thank you, I've read to much about the MTX , appreciate your help , hope things get back to 'normal' for you asap ☺️

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I took Mtx for seven years and didn’t lose a single hair. If fact I had seven lovely years only taking the odd paracetamol.

Please try to stop thinking of Mtx as the drug from hell .....for a lot of people it is the drug that enables them to live an almost pain free life.

Anxiety over a particular drug ......like the feelings you describe when you lie down......in this case Mtx.....often causes symptoms that have nothing to do with the drug’s effects.....they are just the way you feel.

Of course tell your rheumy nurse...but maybe if you stop worrying about side effects that heavy feeling will stop?

You must remember those who are enjoying their life taking Mtx on this site often don’t bother to come on and say how good they feel. Human nature being what it is - we only have a good old moan when we are feeling bad.

Anyway push come to shove ....what is losing a few hairs for a while getting settled on a drug.....to feeling so much better? I haven’t read of anyone going bald have you?

However..... if you can’t get over these feelings about Mtx, it might be worth asking your rheumatologist if you could change drugs. If you are going to be constantly worrying what is going to happen next you are not likely to settle on it & get the full benefit are you ?

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Well said AgedCrone, I totally agree with you .

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How supportive, thank you for your time

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Good advice. I need to remember this as well. Most of the time I believe my anxiety creates more issues. Thank you.

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Oh thank you AgedCrone, iv had the X-ray and blood tests , all ok so waiting to start Mtx any day now so thank you for being so positive I was having second thoughts until I read your reply xx

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I know I’m a bit of a PollyAnna,but I have always embarked on a new drug with the idea that THIS ONE will be it!

Of course it hasn’t always been the case but it does cut out all the anxiety & panic attack symptoms!

Mind you...it costs...every time I see something I want...I tell myself I’m being brave ...so I deserve it.

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I will get my positive thinking head back on thank you xx

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Make sure you take folic acid. I take 1 mg per day and so far my hair has not fallen out. Although if feels thinner, my hair dresser says my scalp and hair appear to be fine.

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Hi..did you ring 111 or contact your GP? These were dangerous side effects...

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Having been on MTX injections for over 4 years now, I am in the process of being investigated as to whether the MTX has caused Fibrosis or COPD which I have, the investigation will be able to pinpoint the cause of my breathlessness, so if you are breathless see your GP straight away, the way it was explained to me was with taking the MTX I had quality of life with relief from RA or a longer life with pain without taking it. I chose quality of life.

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I so agree with you.

Whatever is the point of voluntarily condemning yourself to an old age riddled with pain ....when taking a drug that will help...that might cause damage ......will enable you to enjoy the life you have?

Live for today, tomorrow will take care if itself!

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Hi I’m on methotrexate been on about 6 years no problem before starting it cause they checked my lungs but now after suffering dry cough got a unusual small mass on them , been for a bronchoscope yesterday , doctor thinks it’s a infection I think it’s caused by methotrexate

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Or more likely an infection caused by the MTX dampening your immune system. I took MTX for 6 or 7 years, never really got on with it and in the end refused to take it. I just manage flares now with Prednisolone -- MTX was doing me in in many ways..But it is cheap and so the NHS like it !

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Yes your probably right I no it’s taking my heath away slowly, il let everyone know when I get answers

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If you feel so strongly that Mtx is having such a dire effect on your health why ever don’t you ask your rheumatologist to change you to something else? If he doesn’t know how you feel he will think you are happy taking Mtx.

A couple of DMARD’s that I took really did not suit me I just told my rheumatologist how I was feeling and he changed my medication straight away.

Absolutely nobody can force you to take drugs you think are harming you.

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Yes I’m going through process now next step il change just want to no what the damage is

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I have been suffering shortness of breath, voice cracking and reflux on Meloxicam. Apparently, the reflux causes erosion in the oesophegus, causing coughing and hoarseness. It is also inhaled into the lungs causing irritation to the lining of the lungs and then shortness of breath. My GP sent me to a 'vocal coach'....grrr!

Soz. Just realised this is about methotrexate, not meloxicam. But will leave it posted just in case there are similarities.

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I could hardly speak normally yesterday. My voice was very weird. It wouldn’t come out right! C

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MELOXICAM OR METHOTREXATE?

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Methotrexate

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I don't know. Have you had reflux?

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No. Just dry cough, hoarse voice, severe dizziness and shortness of breath ..

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Definitely make an appt with your Rheumy or GP.

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Regina, I had all those same symptoms and I kept calling for weeks asking if I should stop taking it. The receptionist always called back and said the doctor said keep taking it. I finally reached a point where I missed a few days of work and felt like I was literally dying. I stopped taking it on my own feeling my body was toxic. Ive been off it for just over a month. This past weekend was the first my stomach seems to have normalized. The cough I have is my old allergy cough and my breathing is so much better. On MTX I could hardly breathe after just walking from the car into the house. I was constantly down not able to do anything. My thinking is clearer. My arms that had hurt so badly are pretty near normal now. My rheumy is away til September. I don’t know what comes next. Maybe a new rheumy. I like mine but she never answered my desperate calls herself. Always the receptionist telling me to continue taking the MTX. I sometimes feel like an experiment and maybe we all are as there is no cure just bouncing from one med to the next. I’m hoping for pain relief only not a long term fix. I’m thinking of trying CBD oil at $100 a small bottle. Here in the US they are touting it as a miracle healer for everything including pain and sleep. And you can buy it over the counter. I’m not sure what comes next but I don’t ever want to feel as awful as I did while taking MTX again. She did tell me it would stay in my system for three months and the pain would come back. Good luck in your decisions on what you do next. Hope whatever you do, you will feel good again.

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I have CBD oil but when I’m in agonizing pain It doesn’t nothing sadly x

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Sorry to hear it doesn’t work.

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I’d write down everything you are unhappy with...make an appointment with your rheumy & tell her straight what you have written here,

Don’t bother with second hand messages from the receptionist...you might as well ask the mailman.

Good Luck...hope you get a different drug prescribed.

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Thank you, AgedCrone. I will make myself do that. I think about it, then don’t. This time, I will.

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Promise?

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Promise! 😊

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Hi Regina, so sorry to hear how unwell you feel. I had really similar side effects. I was diagnosed in February, and prescribed Hydroxychoroquine, MTX and Prednisolone. After taking MTX for 15 weeks I ended up with shortness of breach, extreme fatigue (to the point I could only lie down) and chest pains (I'd had the sore throat for 6 weeks). Ended up going to A&E, had chest xrays and D dimmer test, but all okay. Stopped the MTX and three weeks later felt amazing. Unfortunately all the RA symptoms then started to return as the Hydroxy isn't enough to manage it. Back on the MTX on a lower dose 10mg to see if I can tolerate that (three weeks in, and pretty terrified of the potential side effects). If the sore throat and shortness of breath return I will stop immediately before it gets to the stage it got to before, and will look at changing to a different DMARD.

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I'm late in replying, but wanted to share my experience with MTX. I started with pills and quickly changed to the injection for no other reason except that it might be more effective by injection. After a few weeks, my entire body dried up like a prune. My skin became fragile, my lower lady parts shriveled and my lungs reacted with a dry cough and chest pain. I coughed so hard that I thought I broke ribs. My hair fell out in wads. I began to age very quickly and felt run over by a mack truck. I was taken off of the drug. Shortly after stopping it, I developed trouble breathing and pain in my jaw and chest. I thought I was having heart issues. Turned out to be adult onset asthma, which I believe was caused by the MTX. I don't tell you this to scare you, but to make you aware of things to look out for. MTX was my nightmare, but it works miracles in many. I also, later tested positive for the MTHFR gene mutation. I now know that people with that mutation should not take MTX. Might be worth asking to be tested for that mutation. Just a thought.

All the best to you.

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