MTX side effects?

Hi, I've been on MTX and Folic acid for 6 months. I didn't take the folic acid for a month because I didn't know how important it is. Anyway I have taken the MTX weekly and folic acid daily now. I have monthly blood tests and was seeing the specialist monthly but last visit was told 3 monthly is fine however I have been referred to a physio for muscle loss. A week ago I had a call from my specialist advising I had a high liver spike and to stop the MTX and have another blood test. I did that the next day so now just waiting. By this time you may have noticed I can't write a short note :)

My question to you is: have you suffered significant hair loss, loss of breath after climbing a couple of stairs, filmy eyes and one of my toes feels like it has no feeling in it. I have read several people have the itchy dry skin and fatigue which I do. I loved being pain free so now I'm off all meds I'm starting to panic about the pain returning.

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  • There are many other meds, so don't worry about that for now. More important is making sure your liver and lungs are tolerating the MTX so make sure you do tell your rheumy team about your breathlessness. That can be an important sign that you and MTX are not going to be long term friends.

    Hair loss is more common to start with, but often goes back to normal after you've been on the drug for a while.

  • Can you have a steroid jab to help?

  • I'm not sure yet, only on prednisone at the moment, second bt came back same as first. Had more test and they are checking a few extras :) I have an appointment on Monday with Specialist, she said there are "other" meds we can try.

  • I to was on MTX for about eighteen months I did not have any side effects. But I now have shortness of breath that has effected me greatly I have been told I should have had a lung function test before I took MTX and one after six months. The short answer is I did not have the tests done until it was to late and I have got COPD. I would urge you to have the test done to make sure your lungs are ok I am now on biology injections and the nurse who came to my home said I had what they called MTX lung. I also found out that the reason that they do not give you a first lung function test is you must have a breathing problem first sorry this is so long but I hope it can help you in any way good luck!

  • Thank you, everything helps me :) I have learnt to so much from this forum.

    Since I've not been on the MTX I have noticed the breathlessness is improving. I'm just taking prednisone at the moment. Still not normal but much better. I see the specialist on Monday so hopefully will get results to latest bt.

  • Hi

    I had hair loss due to MTX but after a few months the hair loss stopped.

    As for breathing issues. My RA involves my lungs too, though thankfully very mildly (and I hope this continues). I was told to keep a close watch on my lungs and to stop the MTX immediately if I experienced a dry cough. I was to then go straight to my GP and get her to send me for a chest x-ray.

    I have been on MTX for just over a year and was told the lung issue would have surfaced by now but I was to keep vigilant regardless.

    I have a base line reading because my RA as I say has gone for my lungs anyway.

  • Gosh I have to go for a second x Ray on Friday as she did not like my last x Ray I did not know it could affect your lungs.

  • Sorry to hear you have to go for a 2nd x-ray. Did they 'screw up' the first one?

    Yes, that is one of the risks with taking MTX though the risk is very low indeed. Can't recall the figure, think I was told it was around 1.5 or 2% but don't quote me on it. All I know for sure is that combining my lung issue + taking MTX = less than 5%. Less than 5% is considered very low risk (I work with stats in my day job). So my Consultant told me this as he knows I work with Stats.

    Good luck - keeping my fingers crossed for you that it all turns out to be okay.

    Joy

  • Hi Joy, my specialist thought the blood test was not right, I've had 2 more since and they were the same. I find out the results to the last one on Monday. Thank you so much, I really do appreciate your replies.

  • How did your X-ray go Mary? I've had 3 more blood tests and only been taking prednisone, I feel a lot better. Read Joy_1's reply (reply before your's). That's why this forum is so good, someone has usually already been there, done that and shares great information.

  • It was strange because I had only just had a chest, hands, feet, knees etc X-ray. I was doing ok then, bang! Liver spiked on 2 bt's, breathlessness, weakness in general and heavy hair loss. I've noticed this week my hair isn't coming out in clumps and my breathing has improved. I do think it was the MTX, I see my specialist on Monday so will know more.

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