Methotrexate side affects

[jules1955]

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.

[BethCH]

i was on 20mg MTX til July. Initially started on tablets but switched to injections because of the nausea. I did get mouth ulcers too but only a few. However, more to the point, I did get chest tightness, I have had asthma for a number of years. My monthly chest x-rays were all clear and no sign of inflammation. (regular chest x-rays are a necessity while on MTX). NHS advice asks you to ring 111 immediately if you get breathless on MTX. Are you or your sister able to do this? I know it feels very scary but it may put her mind at rest. I hope you get this sorted. Take care

[BethCH]

Apologies, monthly blood tests are a necessity. An initial chest xray is required but i had some more cos of the asthma.

[PMRpro Ambassador]

Is she not also on folic acid? It is the effect of MTX on folate that causes the mouth ulcers. Some people need a 5mg tablet every day except MTX day - some doctor only say 1x weekly which is rarely enough. So a load of folate should help the ulcers now she has stopped it.

Breathlessness is a red flag symptom with MTX - at least her GP has got that right. Nausea is about par for the course for most people with MTX - it was the one adverse effect I DIDN'T suffer!

I think at least a call to 111 would probably be a good idea.

[PMRpro Ambassador in reply to PMRpro]

Just to add - I just asked my daughter who works in the ED, She says call 111, if she feels she can get to A&E she should go,

[jules1955 in reply to PMRpro]

She actually saw her GP on Tuesday and was told to stop the Mx and the folic acid. Her BP was up but reduced while with GP. She is now waiting to hear from her Rheumatologist.

[PMRpro Ambassador in reply to jules1955]

I think the folic acid would be fine - and help the ulcers.

MTX has a few horrible side effects but some rheumies think it is a wonderful drug and works for everyone. A study compared what patients thought and what the rheumies thought. They thought it was great, worked very well and patients tolerated it well. The patients, on the other hand, often disliked it and about a third had had to stop it because of side effects, another third because it plain didn't work - so only about a third used it successfully. Wouldn't you think they should have noticed 2/3 of their patients didn't benefit? And THAT was in RA where is it the first line drug. It's a whole different ballgame in PMR.

[jules1955 in reply to PMRpro]

As she has seen her GP about the breathlessness, and been sent home do you think as the Mx leaves her system she will feel better ? Obvs if it gets worse call 111

[PMRpro Ambassador in reply to jules1955]

If the breathlessness gets any worse she needs medical advice - my daughter's comment was "please don't wait until you are proper poorly". So many are doing that at present because they can't get GP appointments and are afraid of long waits at A&E - so don't go until really sick and they have to - and that makes it very difficult to sort out. Difficulty in breathing can be due to a lot of things, including MTX. But that might be a coincidence.

[jules1955 in reply to PMRpro]

Thank you for your advice and I will pass it on to her. Surely the GP would not have sent her home to await response from Rheumatologist if she felt it was serious.

[PMRpro Ambassador in reply to jules1955]

She might not have thought it was serious - but with DIB you really never know.

[sdowney717]

I am on 12.5 mg methotrexate and not noticing much of anything. Been on it maybe month and a half. Had 2 sore spots in my mouth but that went away. It helped me lower my pred dose from 7.5 to 2 so far. I also take Hydroxychloroquine everyday 2 tablets. Rheumy said it has synergistic effect with methotrexate. I would think side effects could be dose dependent for methotrexate, you take the pills only once per week.

[Myfoe]

It has taken me a couple months to figure out injection of 25mg methotrexate once a week is causing my shortness of breath worse in a.m blood oxygen drops in low 80s perplexing is it gets worse at complete rest or when I just sit down after a walk and someone walks in my office and I have to talk I had pre methotrexate X-ray and one checkup xray since I been on methotrexate 10 months it took 3 months to start helping me reduce prednisone I meet with my rheumatologist end of the month she’s talking taking me off and starting KEVZARA $$$$$$ my biggest fear is I won’t be able to catch my breath I took a walking test at cardio my blood oxygen only dropped to 87 they said supplemental oxygen was not necessary once I rest a little my oxygen levels go back to low 90s I want off this crazy ride you are not alone…

[PMRpro Ambassador in reply to Myfoe]

If it is the MTX - I'm darned if I would be taking it!

[Myfoe in reply to PMRpro]

Agreed!! i literally just pined the tail on the methotrexate donkey this week I have peripheral neuropathy back issues after compression fractures high blood pressure etc. so I take a host of meds I sharpened my pencil I just had a nasty flare my rheumatologist treats prednisone like crack cocaine hence pressure to drop too rapidly add uncontrolled heat and humidity in office were contributor's to my flare but methotrexate is history for me

[PMRpro Ambassador in reply to Myfoe]

I wish I knew why they are SO scared of pred. If you are going to diagnose PMR and GCA you need to use it. I have yet to experience anything due to pred that is worse than the 5 years I had PMR without it. And I've been on it for 14 years!!!!!

[Joseph14612 in reply to Myfoe]

Thank you for posting this....I am stuck at 20 mg pred and 7 months of Actemra and rheumy wants me to try MTX, even though I have COPD ,,,,I was, until I started reading these side effects.....

[PMRpro Ambassador in reply to Joseph14612]

If you can't get lower than that after 7 months of Actemra, it rather begs the question as to whether this is indeed PMR/GCA. However, I think the full effect of Actemra took well over 6 months to happen for me.

In fact, the messages in the literature are mixed and in some cases MTX is used in rheumatology, A relatively recent study suggests it might even be of use in severe COPD.

erj.ersjournals.com/content...

[Joseph14612 in reply to PMRpro]

Interesting...my COPD was diagnosed 20 years ago and considered moderate...my last PFT showed an improvement to mild....I have never been bothered much by it.

I quit smoking 20 yrs ago....so why do people have breathing problems using MTX? I really would like to wean lower off prednisone since I am having multiple side effects from it. Ruptured achlilles tendon, now I need a hip replacement, cataracts, etc.

[Kuipersr2 in reply to Myfoe]

My Rheumatologist just suggested Kevzara for me as well. Expensive! Risk of infection! What have you heard about this medication?

[PMRpro Ambassador in reply to Kuipersr2]

There is a thread about its approval in the USA for PMR. It is an IL-6 antagonist like Actemra but it works in a different way.

There are past posts about it on this forum and more on the NRAS forum - listed here:

healthunlocked.com/search/p...

[autumnlass]

MTX gave me breathlessness with MTX too. Rheumy took me off it immediately, and ordered CXR pronto. It was fine. Although I do get out of puff in-the first day or so. 😮‍💨Good Luck with the Kevzara too. 🍀