Update on Methotrexate side effects

[jules1955]

Two weeks ago I posted -

My Sister has just called me to say she is in such a bad way - she was diagnosed with PMR last year and has been taking Methotrexate for about 12 weeks - she has mouth ulcers, cold sores, a rash on her chin, feeling sick, constipation and more worrying is really breathless just getting up and going to loo. Her GP has said to stop MX Immediately ( she was taking 15mg a week ) and referred her back to Rheumatologist. Has anyone else suffered the breathlessness? She says it’s like asthma and is very worried.

She eventually had a consultation with her Rheumatologist yesterday ( after 2 weeks ! and not in person - by telephone ) He told her that the MTX takes 3 months to leave her system and that her lungs look fluffy on Xray ( he did tell her the medical term but she couldn't remember ) and that he wants a Radiologist to have a closer look at this Xray. We were due to go on holiday next Saturday and he has told her no flying for at least another 6 weeks. She has to have more blood tests and another chest Xray in 2 weeks. She is still having difficulty breathing when walking any distance. I just hope she does not have any lasting side effects from this, particularly with her lungs.

I refused to take this when offered a few years ago - because I had read of some bad side effects on the PMRGCAuk site ( Thank You ! ) and I did tell my Sister this.

[piglette]

Your poor sister. I wonder if she has caught Covid?

[jules1955 in reply to piglette]

Hi piglette, no she hasn’t had Covid.

[piglette in reply to jules1955]

It was just seemed that some of her symptoms sounded like Covid symptoms particularly regarding the lungs.

[PMRpro Ambassador]

If she has mouth ulcers - how much folic acid was she taking? Some doctors just won't use enough. If she gets some now it might help them heal quicker.

arthritis.org/diseases/more...

might be interesting to you - in it it says that a pulmonary specialist at the Rochester Mayo clinic says it is rare (not that that is any consolation when it has happened to you) and reverses once you stop MTX.

Has she had lung problems before?

[jules1955 in reply to PMRpro]

Hi PMRpro she had antibiotics from GP for her face and ulcers and they are clearing up. She has had no lung problems and her X-ray before MTX was clear.

[PMRpro Ambassador in reply to jules1955]

According to that article, not enough folate can contribute to lung effects. Have they upped her pred dose?

[jules1955 in reply to PMRpro]

Yes - told her to up it to 15mg

[PMRpro Ambassador in reply to jules1955]

That still isn't a lot! Oh well, better than nothing even if it is a bit late.

[Sandmason in reply to PMRpro]

On folic acid, my own DNA reports tell me I need methyl folate and should not take folic acid. It's a fairly common mutation, MTHFR, and I wonder if it would matter with methotrexate. I did buy a methylated folate multivitamin at least. Maybe some people can't process folic acid.

[PMRpro Ambassador in reply to Sandmason]

Hmm - but you'd think they have thought about that over the years ... MTX has been in use for well over 30 years.

How does that work with dietary folate?

[Sandmason in reply to PMRpro]

No idea! Some of the DNA stuff is probably bs anyway, like so much else. Hard to know anything anymore.

[Rugger]

I was a little breathless on MTX, but not as bad as your sister. I blamed the MTX, as it started soon after I took MTX. I stopped MTX after 6 months and the breathlessness went away. I do hope your sister improves soon and you are able to reschedule (and enjoy) your holiday.

(My Rheumatologist arranged an X-ray and a CT scan of my lungs and referred me to a chest physician, who reassured me that there was nothing sinister. I was taking 5mg folic acid on 6 days a week.)

[Sheilamac]

I became very breathless within a few days of starting Prednisolone. I couldn't walk very far at all and certainly not talk at the same time..... Doc wouldn't have it that it was the steroid, so tests and xrays followed, but I didn't have heart or lung problems. It improved a little bit as the dose fell but it was always a nuisance. However, whatever the side effects of Prednisolone I was so grateful to it for getting rid of my pain which I had had for nearly a year and was very debilitating, it was like a miracle, so I never considered a different drug.

[Bringonthemusic]

I am very sorry for your sister. I am sure she is feeling very scared and unwell.

I suffered the same side effects as your sister. I had very bad mouth ulcers, I was breathless to the point that I had difficulty speaking, simple things were a huge effort. At night I sweated so much I would have to change clothes several times. I stopped the methotrexate and eventually after several months things improved. I believe the 10mg of Methotrexate on top of the 30 mg of Prednisolone was just too much. Instead of helping, it had the opposite affect.

I was then put on Leflunomide with the Pred and the mouth ulcers started to return almost immediately. With this drug I had even worse hair loss than on the Pred. I immediately asked to stop this drug.

I have been battling on with just the Pred, currently in year 4 of PMR with GCA . I am about to start my first week at 4mg of Pred.

I am sorry this isn't more helpful. I hope your sister feels better very soon.

[PMRpro Ambassador in reply to Bringonthemusic]

But if you ask a lot of rheumies they will assert both those drugs are SO much better/safer/fewer adverse effects than pred. For many of us. that just isn't true. Plus, as well as possibly enhancing the antiinflammatory effect of pred, they also enhance the adverse effects too!

[SRIXON in reply to Bringonthemusic]

30mg prednisone wow my Rhemy is giving ne hard time as I've been up and down on ored since 2017 the max being 15mg Im now and have been on 7mg for a while. He is keen to ween me off pred and looking to start me on this Mex drug, I am apprehensive. X

[PMRpro Ambassador in reply to SRIXON]

As I just said to someone else - if you are down to 7mg on your own, suggesting that MTX would help is a borderline theory. It doesn't work for everyone and as you have seen can have unpleasant side effects. After 7 years it is adrenal effects that will be the hardest part from here on although the PMR is almost certainly still there.

[jules1955]

Thank you for all your comments, I spoke to my Sister today and her breathing is starting to feel much better. She is still waiting to see results from the radiologist about her Xray. The Rheumatologist has already started talking about an alternative to MTX and she has been on Pred for less than a year.

[PMRpro Ambassador in reply to jules1955]

My response to that would be thanks but no thanks!! They can't force her and most of us in the UK get through on pred alone.

[jules1955 in reply to PMRpro]

Exactly what I said - she is not going to risk taking anything else.