Delaying methotrexate: Hi I am on oral MTX and... - NRAS

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Delaying methotrexate

BlightyFiveStar profile image
10 Replies

Hi I am on oral MTX and hydroxychloroquine. Only took first dose of Mtx last Wed at 15mg, was meant to take 20 this week and 25 next. Having started on a Wed I then had to be away for a new work contract Wed-Fri when I should have taken my second dose, and didn't take it in case it made me unwell while away which would have been difficult to manage. Now I am 4 days late as also missed today due to travelling all day. Wondering whether this much delay matters? I would like my eventual 'feeling rubbish' days to be Thurs and Fri, so should I just wait till the coming Thurs (so would be 2 weeks late) or take dose tomorrow and gradually edge towards a Thurs by a day each week? Hope that makes sense. Only guidance I had from hospital was don't take too close together and to change day you have to delay as you can't do less than 7 day gap - but not clear how much delay is OK.

Thanks for any guidance.

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BlightyFiveStar
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10 Replies
AgedCrone profile image
AgedCrone

Yes BFS, I'd do the edging (!).....that is take the Mtx now, & add a day each week until you are where you want to be....but don't anticipate 'feeling rubbish' take it & forget it. Drink plenty of water & try to keep off unhealthy food.

I used to miss a week if I was feeling fragile,& my Rheumy said that was OK.

Good Luck...... if it works for you it really a miracle drug!

Lolalaley profile image
Lolalaley in reply to AgedCrone

It is a miracle drug!!

nomoreheels profile image
nomoreheels

As you've only taken the first dose I'd leave it to the Thurs or Fri but you'll need to inform whoever will be taking your drug monitoring bloods as the results won't correlate to your original starting date. If you prefer you could take it now or tomorrow as it's 11 days since your last dose (or 12 days if you choose to take it tomorrow) & do as you're considering but I think as you've only another 4 or 5 days til your proposed dosing day it's easier to delay it til then, but do be sure you mention it to whoever takes blood especially if you're on fortnightly new DMARD monitoring for the first 6 weeks or so. It does seem an unusually fast titre though, ordinarily only once your bloods show your levels are acceptable is it considered your dose be increased. Titred up over a longer time also allows your body to get used to it, & usually means less chance of responding negatively. Was there a particular reason your Rheumy directed you do such a fast titre?

I hope it works as well for you as it has for me.

Moomin8 profile image
Moomin8

Morning 🙂I simply moved mine forwards a couple of days at a time until it was a day on which I wanted to take it at first. There have been a few times when I have missed a week (special occasions like bdays or holiday) which was fine too. What I would question is: why have they asked you to increase the dose so quickly? I had a gradual increase at first - the same dose over a few weeks at a time- so that my body got used to it. If you're not sure about anything ring your clinical nurse or rheumatologist; I wouldn't worry too much though as I'm sure you'll be fine. I hope you have folic acid tablets to take as they help stave off nausea; I have mtx (by injection) on Monday and take folic acid from Thursday through to Sunday. Hope you're feeling better soon.

Pamelah5 profile image
Pamelah5

Has a suggestion Why don't you take meds on a Friday evening you might be able to sleep off most side effects.

I wish you luck

Lolalaley profile image
Lolalaley in reply to Pamelah5

That is a good sugestion. I take 3 at dinner time and 3 more at bedtime on Wednesdays. Thursday morning I may or may not have any side effects. It has been a year since I started with MTX and the results are great.

mickyb profile image
mickyb

Hello.

My experience with MTX was the same as yours unfortunately. I went onto injections after about a year thus it not having to go thru my digestive system and the side effects are virtually non excistant now and down to 10mg. I've been on MTX for 5 years. Also I moved my MTX to Saturday night so if there was any side effects I had Sunday to get over them.

Wishing you all the best

Mellisa1066 profile image
Mellisa1066

I would often get told to miss a whole week or longer if i had alot of sores in my mouth etc.

the only thing i would worry about is if you leave a large gap shouldnt you take the lower dose again.

When i started on methotrexate i was on 15mg for the first 4 weeks with 2 weekly bloods. Then if all ok i went up to 20mg with another 2 x 2 weekly bloods at higher dose then to monthly bloods regularly. U seemed to be upped in one week . My Rheumy will never do that she said it can make some people very ill doing that. I was on injection maybe its different. As I did get very bad vomiting with tablets and went on injection and had to take 6 folic acid 6 days a week apart from day i had methotrexate as lack of folic acid from the methotrexate can cause bad sickness.

Just thought I'd ask unless I read it wrong. Or its changed since I started a couple of years back?

Just worried as your body isnt even used to the drug and if you leave a big gap then just go straight up to 20mg you may feel bad side affects ( if you have only had one dose?)

I would call your Rheuy team reception and ask to speak to one of the nurses first on Monday.

Good luck anyway xxxx

Damaged profile image
Damaged

Wow, things are very different depending on doctors, I guess. Being new to this drug may I strongly recommend you contact your nurse or Rheumatologist before proceeding. This is not a drug to be casual with. I also agree with several people that the schedule you have is not what most specialists would do. It can take months for this drug to start working, pills create much stronger side effects and folic acid is essential. It is used to prevent anemia. It will also nullify MTX so you should be on everyday but injection or MTX day. Your body does not have time to adjust in a week. It should longer. If you work then plan MTX for weekend when you can rest for a day. Plenty of water is helpful as well. You may want to pace yourself. It sounds like a hectic , pressured work environment. Remember , stress is not your friend. Please be kind to yourself and preserve your strength and use it wisely. I have no doubt that my fourteen hour days propelled me into a flare which shut me down completely. I was over a year before I got inflammation under control. Our body will only take abuse so long before pushing back. Best of luck with treatment and please consider expert medical advise before messing around with these drugs.

BlightyFiveStar profile image
BlightyFiveStar

Thanks for all the replies. I have already left a msg for rheumy nurses and waiting call back hopefully tomorrow. I decided not to take it today and wait to see what they say.

I am now concerned about the leap up in dose in a short time as so many of you have raised it. Being new to this I did not know it was unusual. It's hard when you don't know what you should be questioning as I just took it that that was normal. They did say if I felt very unwell then stay at the lower dose for longer. I have felt sick and dizzy and had low appetite but also thought this was 'normal'. Now I am thinking stay at 15 mg for longer. To be honest I just want none of this to be happening :-( and just want to cry or go to sleep and wake to find it is all a bad dream or a mistake.

I did request injection MTX instead of oral as I have problems with nausea and stomach anyway but it was not granted (yet).

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