What is Methotrexate doing for me? Shall I stop it?

[Prof99]

Hello learned folk, I am thinking about stopping Methotrexate and I wonder what experiences people have had. I was put on it, January 2021 to help me reduce my steroids. I was on 4.5mg Pred. then. I started on 10mg of MTX and didn’t feel any effect. Rheumy then put me up by 2.5mg every three weeks until I got to 20mg, which I have been on since.

I still don’t think it is having any effect as every time I drop my Pred by just .5mg I have 3-4 weeks of uncomfortable symptoms. Also, there are so many restrictions on what I can’t do while taking MTX (drink alcohol, take multi-vitamins, etc) - I phoned the Rhemy Helpline 4 weeks ago and asked if my Rhemy could phone me ........... no call as yet!! So here I am, a year later, still only reduced my Pred from 4.5mg to 2.5mg in a year – what IS MTX doing for me?

Has anyone else taken it upon themselves to stop MTX, and how did it go?

[PMRpro Ambassador]

Sometimes you have to stop it in order to find out what it is doing for you!

[Prof99 in reply to PMRpro]

Yes, I may just have to be brave and try it, but I just wanted to see if others had any experiences to share.

[PMRpro Ambassador in reply to Prof99]

Patience!

[Maisie1958]

Hi I’ve been on 15mg MTX since 1st August 2021, long story - PMR now likely seronegative inflammatory arthritis, again reduced 5mg Pred to 0.5mg daily since then. Didn’t think MTX was doing much at all until I missed a couple of doses in November around time of Covid booster and wrists and ankles really started to ache again, I was keen to restart. Everyone is different and you might have to experiment a bit to satisfy your curiosity? Hope it works out well for you. All the best.

PS was told it was ok to drink alcohol but just stay below 14 units a week- so I have done 🥂

[Prof99 in reply to Maisie1958]

Thanks Maisie - when you went back on it, did you go straight back onto a high dose or did you build up again slowly?

[Abbey17 in reply to Maisie1958]

Working well for me, my GP told me the same about alcohol, just keep in moderation. Pharmacist said I can take multi vitamins and Biotin, just not on the day of the MTX.

[Prof99 in reply to Abbey17]

Ah, that is interesting - thank you Abbey.

[karegodd in reply to Abbey17]

I’ve been on mtx since 2017. Never heard anything about not taking vitamins day of mtx just don’t take my folic acid.

[Abbey17 in reply to karegodd]

Apparently it depends what is in them, it was advisory

[karegodd in reply to Abbey17]

K thanks.

[Maisie1958]

Hi - I’ve been on 15mg tablets weekly from the start- I thought the consultant said to start on 7.5mg and work up but the rheumy nurse was adamant to start on 15mg… they also seemed to think 20/25mg was the most common dose but Consultant had told me 15mg should be ok if doing the job so I’ve resisted any increase. I think the Rheumatology nurse mainly deals with “pure” RA patients. I take folic acid 6 days a week now. To be fair I’ve not really had problems on MTX apart from mild nausea and some hair loss initially- fingers crossed that continues. I really didn’t want to start MTX , prednisolone worked well on its own for years.

[Rottsuzi]

Hi prof99 , I feel exactly the same been on methotrexate injections now about 6months I still get this very blah feeling after I take it it’s like a hangover the next day , I am down to the lowest prednisolone In 21/2 years at 5mg but I keep wondering what is it actually doing for me but I don’t want to stop and things go haywire and I’m back up the preds .

[Mota1]

Hi Prof 99Do you know why you were told to avoid multivitamins? Was it because they contain folic acid which should not be taken on the same day as methotrexate? However, that would not explain why they cannot be used on the other days.

Thanks

[PMRpro Ambassador in reply to Mota1]

Judging by the NHS and versusarthritis sites, it is the folic acid content of supplements that is of concern. I imagine they say don;t use multivits simply because you often aren't aware of the wide variety of things in them and they could interfere with drug actions. Easier to say don't use them at all than try to explain the exceptions.

[Mota1 in reply to PMRpro]

Thanks, much appreciated.

[Prof99 in reply to PMRpro]

Yes, PMRPro - I feel you are spot on with that - it is easier to say don't take Vitamins than to try to cover themselves. I had a drink of Tonic Water a while ago (no Gin 😜) and I felt really odd and strange afterwards. I asked my Pharmacist about it and he said the Quinine in Tonic Water would have reacted with the MTX and caused the odd sensation. It has, naturally, made me very cautious of following the advice not to drink!

[PMRpro Ambassador in reply to Prof99]

Bit sceptical of that - the amount of quinine in modern tonic water is very low! Maybe you'd have been better off with the G as well as the T! It could have been whatever botanicals were in the T - I have reacted badly to certain herb flavoured schnapps in the past.

[Plains]

I was on Methotrexate, I started it when I was on 8 mg of prednisone. I was able to get down to 4.5 mg of prednisone and felt good. I asked him if I could try going off it, he said I would know in about six weeks if it was helping me. At about the seventh week, not reducing my prednisone I got a bad flair. I went up to 6 mg of prednisone for a few days and then slowing went down to 5 mg for a month. I am now back to 4.5 and I am doing well. He wanted to put me back on it and I refused because of the liver issues. He is now saying he wants me to go on Humera.

Well shall see… he always told me he would be happy if I got below 5 so don’t know why I have to take this other drug. The only pain area I have at times are my shoulder area and neck.

Best of luck!

[PMRpro Ambassador in reply to Plains]

Have you got PMR or is there also an inflammatory arthritis involved? If it is PMR then Humira is not recommended in the 2015 Guidelines. Biologics are very specific and only work on one thing in the metabolism. The Humira target is very very rarely involved in PMR. If he wants a biologic - it should be tocilizumab but it is off-label prescribing for PMR as the big clinical trials haven't been done.

A recent small clinical trial in Austria with 36 patients has shown TCZ works well in new onset PMR. There is also another slightly larger trial, from France I think, which has not yet been publlished about use in relapsing PMR - also very good results. However, since tocilizumab is now out of patent there isn't big money to be made out of identifying another use and so they won't fund the sort of trials required to gain the same approval as for GCA. It will remain as off-label use I am told by a member of the team that did the study.

dx.doi.org/10.1136/annrheum...

Sorry you can only see the Abstract without paying. I've got my own copy ...

[Plains in reply to PMRpro]

Thank you for the information. He said I had PMR first, then said Polymyalgia, then poly arthritis along with fibromyalgia. Never did any X-rays or anything. I do know that I have inflammation for sure. I wish I could find another doc, no many to choose from in my area.

[PMRpro Ambassador in reply to Plains]

Well there is a rather wide "cover all aspects" range there!! There is a bit of difference between polymyalgia and polyarthritis - the former is muscles and soft tissue, the second is involving at least 5 joints. And fibro doesn't involve inflammation - so doesn't respond to pred. I think a bit of searching may be called for!!

[PMRCanada in reply to PMRpro]

Very disappointing that TCZ will remain off-label ☹️

[PMRpro Ambassador in reply to PMRCanada]

In some countries it won't matter - here for example. Especially once these studies are in the mainstream and they realise it is useful at least for the referactive/relapsing form of PMR. But cost may improve because companies could make bioidenticals.

[Prof99 in reply to Plains]

That is all very interesting Plains - thank you for taking the time to share your experience. Best Wishes

[PMRCanada]

Thanks so much for starting this thread. As a relatively new MTX user for tapering pred, all this info is informative and helpful. Wishing you all the best in your decision and outcome.

[Prof99 in reply to PMRCanada]

Best of luck in your PMR journey too 🥰

[Sharitone]

6 weeks ago I had to stop MTX (20mg since last June) because the pharmacist made a mistake, and rheumy nurse said to leave off it till I saw consultant 4 weeks later. He then said to stop it, on the grounds it hadn't made any difference. I was relieved about that; I was always extra tired after taking it. But in your position I would be calling the helpline back.

[Unnisteffceri]

I was started on methotrexate I about three years ago....had little /no effect. Then put in a different RA drug in addition. Still no effect as my symptoms got worse. Then put on an additional RA drug...by then I was on 3 different RA drugs at the same time. By then I was so bad Icould walk for only 50metres without having to rest. Finally I decided things were getting silly as the more drugs I took the worse I seemed to get so I made the independent decision to cut out all the drugs I was on, against GP advice. Within 2 months I was walking 5 to 6 miles a day on my local SW coastal path. No withdrawal symptoms...Still a bit creaky in joints but not crippled like the drugs had made me. Never again.

[Prof99 in reply to Unnisteffceri]

Wow! What a fantastic story - well done you.