Slightly Lowering Methotrexate tablets: Dear All... - NRAS

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Slightly Lowering Methotrexate tablets

MJSlide1958 profile image
44 Replies

Dear All,

Please can anyone advise regarding gradually lowering Methotrexate. Obviously it will be lowered via Rheumy permission. It's just to help with making the nausea a bit easier to cope with, as 15mg weekly is working with Enbrel currently apart from the sicky nasty feeling! So thinking of getting Rheumy permission to lower, but could it start the joints playing up?? by reducing from 15mg to 12.5mg (just one tablet lower)? If it didn't work would that mean taking monthly blood checks again? if having to increase one more tablet to 15mg again? Currently bloods are 3 monthly since last year. Have been on MTX since Summer 2020. Had to add MTX to Enbrel after Enbrel not working on its own anymore, it was great on its own for 8 years straight! Do not want to change to MTX injections at this present time.... would prefer to keep on the tablets for now! 5mg folic acid is taken 6 days a week. Any advice for MTX lowering would be great please! Thanks so much. x

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44 Replies
MadBunny profile image
MadBunny

Hi there.

I'm sorry to hear you are having problems with mtx and side effects. Unfortunately, we are not able to give medical advice on here. It is something which needs to be discussed with your rheumatologist. They will be able to look at the bigger picture, and work out what will be the best course of action for you.

Let us know how you get on.

MJSlide1958 profile image
MJSlide1958 in reply to MadBunny

Thanks

nomoreheels profile image
nomoreheels

It is commonly done so I see no reason not to ask if it's the right thing to do for you at this time, you can only try after all. Alternatively, have you considered remaining on the dose you're on & asking your GP if an antiemetic would be appropriate, considering you're on max dose folic acid ? I have tried 3 different ones & have my preference, to take when I used to increase my MTX. I'm no longer going above 17.5mg so they are somewhat redundant but were very helpful for the few weeks while my body got used to the increase.

MJSlide1958 profile image
MJSlide1958 in reply to nomoreheels

Thanks

MJSlide1958 profile image
MJSlide1958 in reply to nomoreheels

Thanks, what are the different types and strengths of folic acid please?

nomoreheels profile image
nomoreheels in reply to MJSlide1958

Well, the dose we're prescribed is 5mg but you can buy it otc at 400µg (which is equivalent to 0.4mg). I think though reading my reply again I could have worded it differently, the 3 different ones relates to antiemetics not folic acid.

MJSlide1958 profile image
MJSlide1958 in reply to nomoreheels

Thank you very much for explaining.

nomoreheels profile image
nomoreheels in reply to MJSlide1958

Apols if it caused confusion.

MJSlide1958 profile image
MJSlide1958 in reply to nomoreheels

Not at all, thanks

Potatos profile image
Potatos

I did this a number of years ago at the suggestion of my rheumatologist. I moved gradually from 20mg to 10mg by taking out one tablet a time over a number of weeks.

MJSlide1958 profile image
MJSlide1958 in reply to Potatos

Thanks Potatos, this is interesting to know and exactly what I was wondering. Whilst lowering gradually did you get any joint stiffness or pain/swelling. And are you combining your MTX with a biologic or other med? How are you doing now on the lower dose of MTX? Much appreciated.

Potatos profile image
Potatos in reply to MJSlide1958

I'm on adalimumab as well as methotrexate. It was after my initial consultant retired the new one noticed I had been stable for many years and suggested that 20mg of methotrexate was probably unnecessary and I could try bringing down to 10mg. He didn't recommend any lower as it is thought to prevent rejection of the adalimumab. I've had no change in my disease control and am very happy to be on the lower dose.

MJSlide1958 profile image
MJSlide1958 in reply to Potatos

Thank you so much for your story, this helps alot! I am guessing you get on well with MTX? Do you take tablets or MTX injections? Do you feel sick or unwell at any time with MTX?

Potatos profile image
Potatos in reply to MJSlide1958

I'm on tablets. I take them in the morning, by 9pm I usually have a headache and irritable eyes so I go to bed and fall asleep! I was initially advised to take them at night but I found I woke up with a "hangover" the next morning, I switched it to morning and that seems to work next for me.

MJSlide1958 profile image
MJSlide1958 in reply to Potatos

Thanks! no sickness feeling with taking MTX tablets in the morning? Are you able and feeling ok to go out after taking MTX in morning? Like say going to work? or anywhere after taking?

Potatos profile image
Potatos in reply to MJSlide1958

I'm fine until about 9pm. Not working these days but when I did it didn't affect my work. I take them on a Tuesday and worked from 0800 to 2200 on Tuesdays.

MJSlide1958 profile image
MJSlide1958 in reply to Potatos

Thank you so much for your story, its been very helpful to know that it can work without worry about flares etc when lowering slightly! Can't tell by your name, Potatos, if you are Female or Male?

Potatos profile image
Potatos in reply to MJSlide1958

Female.

MJSlide1958 profile image
MJSlide1958 in reply to Potatos

Thanks so much for your replies.

Feank profile image
Feank

I experienced the same on methotrexate tablets, headache, sickly muzzled yucky feeling, and when I mentioned it to my specialist they suggested trying the injection method....it worked a treat. Alongside folic acid every day except injection day it worked very well for me. Maybe worth mentioning to help you. Have a nice day.

MJSlide1958 profile image
MJSlide1958 in reply to Feank

Yes, excellent idea! What dose was your MTX injection?

Feank profile image
Feank in reply to MJSlide1958

Exactly the same as tablets! Injection was easy to do..spring loaded thingy, made a huge difference to my life style. Just come off it after 5 years, alongside cimzia, as not required anymore! Good luck with it all. X

MJSlide1958 profile image
MJSlide1958 in reply to Feank

Thanks, it's so good to know this. Are you now off of MTX and just on a Biologic?

Feank profile image
Feank in reply to MJSlide1958

Hi. Yes came off cimzia after 6 years, It had stopped working for me, now been on Benapali once a week injection for a year ...suits me really well. X

MJSlide1958 profile image
MJSlide1958 in reply to Feank

Thanks, hope Benepali continues well for you.

helixhelix profile image
helixhelix

I am on MTX and Enbrel, and have managed to get down to 12.5mg MTX - dropped a dose every three months. My rheumy’s goal was 10mg, but couldn’t make the final step!

MJSlide1958 profile image
MJSlide1958 in reply to helixhelix

Great, you have done so well. Did the 10mg not work for you?

helixhelix profile image
helixhelix in reply to MJSlide1958

No. Very quickly I noticed that my morning stiffness lasted longer and I was more achy. So wasn’t going mg to hang around and wait to go into a flare!

MJSlide1958 profile image
MJSlide1958 in reply to helixhelix

Thanks for your reply. Good that you settled on a lower dose than originally.

Chris_O profile image
Chris_O

Hi

Why don’t you ask your RA specialists if you can change to injections? When I changed to injections all of the problems with MTX went away, one of the better moves for me. Hope everything goes well for you.

Chris_0

MJSlide1958 profile image
MJSlide1958 in reply to Chris_O

Good idea, is there a particular dose ( as in the lowest dose) to inject MTX?

MJSlide1958 profile image
MJSlide1958 in reply to Chris_O

Yes thanks, others are saying the same thing. What dose was your MTX injection?

Chris_O profile image
Chris_O in reply to MJSlide1958

Hi

I was originally on 20mg, but recently it’s been reduced to 15 mg

Chris_0

MJSlide1958 profile image
MJSlide1958 in reply to Chris_O

Thanks very much.

allanah profile image
allanah

Hi if it's causing you lots of trouble i would contact rhrumy office as mine changed me onto injectable max which stopped the nausea. Good luck . In the meantime call your pharmacist as see if he can give you antusickness tablets .

It's horrid but will be worth it to get the RA controlled

MJSlide1958 profile image
MJSlide1958 in reply to allanah

Thank you

Porcs profile image
Porcs

Everything is a balance.I’m currently on a reduced dose of 10mg&take 2 Sulfasalazine twice daily.I still feel rough day after taking Methotextrate.My previous dose was 15 mg.I now have deformed hand&atrocious feet,resulting I suspect from decreased dose.However can still do uphill 10km walks,swim@gymn&I am 77

Boxerlady profile image
Boxerlady in reply to Porcs

It's great that you're still doing so much but if you think that the damage has been caused by the reduced Methotrexate dose, maybe it's time for a med review with your team? When my Methotrexate (even at 25mg by injection!) and Hydroxychloroquin wasn't controlling my symptoms they added Sulphasalzine and I'm now up 6 tablets a day.

MJSlide1958 profile image
MJSlide1958 in reply to Boxerlady

Thanks, hope all goes well.

MJSlide1958 profile image
MJSlide1958 in reply to Porcs

I wish you well and hope it all works out fine for you. Thanks

Jollyjill profile image
Jollyjill

Over the past 2 weeks I’ve reduced my 15mg/week dose of MTX to 12.5. I’m being monitored by my Rheumatologist. Based on my self/reporting he will advise on whether to retain, lower or increase this dose. Please keep tuned as I’ll give reports on my status as time progresses. I hope that what you’re doing will yield good results. We keep trying!

MJSlide1958 profile image
MJSlide1958 in reply to Jollyjill

Good luck and hope it all works well. Please let me know how it all goes for you. Thanks

Paula-C profile image
Paula-C

I had my mtx reduced to 7.5mg(I'm on enbrel too and in remission). I started getting swellings and I just didn't feel right so I asked for it to go back to 10mg. It was increased and I was told I had to have blood tests every two weeks for six weeks. I was on 3 monthly bloods, my bloods had been fine for years even on 17,5mg, but I had I still had to have fortnightly bloods, I was told it's protocol when you have your dose increased.

MJSlide1958 profile image
MJSlide1958 in reply to Paula-C

Thanks so much Paula.

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