Methotrexate: Hiya, I am on 4 weekly Tocilizumab... - NRAS

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Methotrexate

10 Replies

Hiya,

I am on 4 weekly Tocilizumab infuses (since 2 years) and also take 6 pills of Methotrexate every week (since 3 years). A neighbor of mine was also on Methotrexate pills, prescribed to her years ago. Her doc has stopped working in the meanwhile and she just kept taking them. Now another doc has warned her off the Methotrexate because it would be dangerous. I don't know the exact circumstances though.

My mother has now read a bit on Methotrexate and found that it can cause some kind of cancer even. Apparently the cancer would disappear when you stop with the pills, but still. And she also read that normally for RA only 3 pills per week are being given, while my doc prescribes me 6 pills.

I was wondering if anyone here gets the pills in addition to a biological and how many pills and if your doc has said anything about it being dangerous. I have an appointment with my doc every 2 months, but just had one last week. So I am to see him back only in September. I do am a little bit in doubt now what to do. Continue until I see him in September and then ask my questions (continue with 6 pills, lower to 3 pills or stop with Methotrexate)? Or try to take contact with him before? I guess when taking them for 3 years already that 2 months won't make a difference? I do have to say I once spoke with him on Methotrexate when I heard someone claim she got cancer from it and he said it was all bullocks.

Thanks, Evy

10 Replies
helixhelix profile image
helixhelix

I’m sure your neighbour means well, but please listen to your doctors not unqualified people who know nothing of your medical history or condition!

Methotrexate is a very safe drug that has been used for RA for over 40 years. It is quite common to take doses of up to 25 -30mg, which is 8 to 10 pills of the standard 2.5mg dose. And 3 pills of that dose is less than the therapeutic dose, so would likely do very little (you loose quite a bit through your digestion). What dose are your pills?

Although research is still not completely convincing it does seem that there might be an increased risk of (reversible) lymphoma with methotrexate. But the thing to focus on is that this is an INCREASED RISK, not an absolute.

So if 1 in 1,000 people who don’t take methotrexate get lymphoma, and taking it increases the risk by 50% that sounds really bad doesn’t it? But only it means that 1.5 people In 1,000 might get it, instead of 1 person. So still a very small risk. And we are very well monitored so concentrate on the fact that it is a great drug for controlling RA which when uncontrolled can kill you, and not on these hypothetical risks.

And tell your neighbour (and your mother) to take up knitting as a hobby, not scaring people!

in reply to helixhelix

Apparently upon further questioning, there is something not right with my neighbor's bone marrow and in the hospital they suspect it is due to the Methotrexate. She used to take 6 pills, had to lower it to 3 and now has to stop all together.

As for my mom, she just mentioned to me what she had read on the paper that comes with the pills. So no blame on her please.

helixhelix profile image
helixhelix in reply to

Lymphoma can affect bone marrow. One hopes that she has the reversible form 🤞🏼

I’ve read the patient information leaflet a number of times over the years and really don’t remember anything about a normal dose being 7.5mg (unless of course you have a different dose pill). Perhaps you should read it yourself?

Amnesiac3637 profile image
Amnesiac3637

I so agree with helixhelix. It helps no one to listen to scare stories, half truths and people who have no qualifications. Our medics train for years (I know, I used to be one) they are specialists in their field, prescribe day in day out and know each individual patient’s problems and medical history. Please don’t go down any dodgy route to even more illness and misery by listening to uninformed and downright dangerous misinformation!

in reply to Amnesiac3637

Please read my reply to the post of helixhelix.

Ali_H profile image
Ali_H

Hi,

I’ve been on MTX for nearly 8 years with no issues and good disease control until I got covid in 2020 when my RA decided to rank up so now I take my 8 MTX tablets (Once a week) and baricitinib (once a day) - so far again no issues.

If you trust your Dr then listen to her/him... if you don’t trust your Dr then time to seek a second qualified opinion!

All the best

Ali

in reply to Ali_H

I trust my doc, but regarding my neighbor has been said to her in the hospital also by trained meds. So it is normal that I wonder, no?

Ali_H profile image
Ali_H

Hi,

Weekly dose of MTX for RA is normal/common here in the UK where it is often the first choice of med at diagnosis- some don’t tolerate it and will switch to a different med and some, like myself, do well on it for years... MTX use for RA is not to be confused with being used for treating other conditions which can be daily dosage and at a much higher dose.

It is common to have folic acid prescribed as well (I take 5mg 5X a week) ...

If the neighbour’s trained medics aren’t rheumatology trained then they could be reflecting on the other uses of the drug or you’re neighbour may have an underlying issue going on... I hope you get some reassurances soon.

All the best

Ali

BoneyC profile image
BoneyC

I've been taking MTX for over 40 years, since a teenager. It's been a great drug for me. I recommend MTX!

I had a routine conversation with a rheumatology nurse last week, she commented how resilient I appear to be and I replied it's probably because I was dx age 6, before the internet and therefore didn't google about potential side effects of MTX. We agreed, if more patients listened to their doctors and maintained a greater sense of proportion about the possible, but unlikely risk of side effects with low dose MTX (no where near the dose a cancer patient would receive), they might do better.

Maureengibson profile image
Maureengibson

I agree with Helixhelix and would follow your Drs advice, rather than listening or acting on articles you’ve read. The standard dose of MTX is 15-25mg, I personally take 25mg, so 10 tablets plus a biologic. It’s important to point out that uncontrolled inflammation can also cause cancer. So reducing your MTX and inflammation reigniting could also increase your risk. I was told I had pulmonary fibrosis, potentially due to the MTX, however when I seen the respiratory specialist she said research has shown the opposite now. That MTX delays the potential of getting pulmonary fibrosis and insisted I continue. Thankfully mine turned out to be damage due to aspirating acid, but I continue my MTX knowing I’m closely monitored by both my rheumatologist and respiratory specialist. If you are seriously considering reducing, I think it’s only right to phone and discuss with your rheumatology team. I actually get anxious when I have to miss a few doses when I’m on antibiotics, because it does wonders for my joints.

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