Changing the day for MTS

[Garnacha]

Hi All

does anyone know if it's ok to change the day you take MTX? the rheumatologist said initially for me to take it on a Friday as it can make you feel sick so I won't feel ill (if that happens) when I go to work, not sure if it's because the dose has increased from 15mg to 20mg but I was feeling slightly sick for 2 days after taking 15mg but it was manageable, however since the increase to 20mg over the last 2 weeks the sickness has got much worse as well as the tiredness and I'm now also feeling really dizzy, it's Tuesday and I still feel sick, tired and dizzy. I can put up with this as I'm guessing it's just one of those things I have to go through but I'm fed up of feeling like it over the weekend, I love gardening but with the pain I have in my elbow and hamstring rely on my husband to help with certain tasks in the garden, it's really frustrating that come the weekend when he's home I feel so yucky I don't want to do anything.

Just wondering, if I move the day forward to Saturday and then the following week to Sunday so the sickness, tiredness & dizziness would be more likely Monday - Thursday, I'd have my weekends back to feeling ok. I'm currently working from home so Monday to Friday it's not too bad as I can go and sit down for a while or even lie down.

Does anyone know if it's ok to move the day on please?

Thank you in advance of any info x

[helixhelix]

Well I have done in the past! The important thing is to leave a full 6-7 days between doses, so moving a day forward at a time is exactly what the guidance says to do.

[Garnacha in reply to helixhelix]

Thank you, I thought it might be ok as I've seen some people on here have missed their dose for various reasons but thought I'd ask what people thought. Think I will change it to Saturday this week and then Sunday the following week, be so nice to feel okish on the weekend x

[Hidden]

I’ve done this no problem. I will say I was on 20mg mtx injections and like you the hangover increased . If this continues after awhile and your have more hangover days than good days contact your team a bit of tweaking might be needed.

[Garnacha in reply to Hidden]

Thank you, I've been on 20mg since 8th January so just over 4 weeks now, not sure if it builds up in your system but assume so as the consultant said initially it can take up to 12 weeks to have any effect, I was on 15mg for 8 weeks then 20mg, when I saw him again on the 19th January he said to give it 4 more weeks which will be next week, not sure what he has planned after the 4 weeks but will definitely see how it goes and if the "hangover" continues will see what he say's x

[allanah]

Agree with all the other replies, I changed mine for that reason x

[Boxerlady]

I've been thinking about changing my day for the same reason. I currently inject (25mg) on a Friday and find that I feel "off" on Saturday and Sunday; I'm working from home and think that being busy might help take my mind off how I'm feeling 🙄 I missed last Friday's dose after having the vaccination on Wednesday and really enjoyed cooking a nice Sunday lunch without feeling nauseous and foggy....

[Garnacha in reply to Boxerlady]

Yes, that's how I feel, feeling yucky on a weekend & Monday & Tuesday but still managing to work from home, as I'm more or less on my own in the week (my son is here as he's furloughed from the hospitality industry at the moment) I find it easier to get on with work which does take my mind off it a bit although I'm aggravating the pain in my elbow, wrist & hamstring sat at the keyboard but, I can take a break whenever and even have a lie down if necessary, I'm not slacking on work so get the best of both worlds as such. I've just been for a lie down as I felt so groggy and am back on the computer checking e-mails now so think they're getting their money's worth I've just said to my husband I'm going to try it x

[ketiv74]

Yes, I have done it multiple times in last 2 years, The Rheumy told me to just make sure to have full week between 2 doses. More than 7 days between doses is ok, but she said to keep continuity once you are on desired day of the week.Also upping Folic acid & drinking more water might help with aftereffects of Mtx.

Hope you see the full effect on Mtx soon and all your pain becomes just distant memory! Good luck!

[Garnacha in reply to ketiv74]

Thank you Ketiv74, I've seen people mention that they take folic acid more than once a week, perhaps I should ask the consultant if I should up my dose of once a week, perhaps it'll help to make a difference whilst waiting for the MTX to fully kick in x

[Boxerlady in reply to Garnacha]

Definitely ask to increase Folic Acid. I take it 6 days a week (not Methotrexate days) and have done since the early days when I had some side effects. It sounds like you're having worse ones than me so it's definitely worth asking your rheumy about 😉

[Garnacha in reply to Boxerlady]

Thank you, I’ve seen lots of comments on various posts about the amount of folic people take & ive always been relatively ok with 5mg once a week,I’ll see how the rest of the week pans out & if the same things happen next week when I change from Friday to Saturday for the MTX, if it’s still the same I’ll email the consultants secretary to find out x

[Hidden]

I had minimal side effects at 15mg with 10mg folic acid once a week, no side effects at 20mg, next to nothing at 25mg oral with folic acid 6 days a week, and then horrendous side effects at 25mg injections even with the folic acid every day except mtx day. There seems to be little rhyme or reason in my experience, but after 5 months on the injections, I am now back to just feeling a bit bleh and horrible for the first full day after, rather than 5 days of dying, with only one vaguely normal feeling day before being due to inject again. I’d also advocate drinking *lots* of water on the day and the day after, and have found that taking it in the evening seems to help. That one’s a bit weird, though, tbh: take it on a monday morning, feel naff from that evening right through to Tuesday bedtime, sometimes Wednesday morning. Take it on a Monday night, feel mostly okay full stop 🤔🤷‍♂️

In terms of moving doses, of course you can. I was told that if you’re on tablets and only looking to move a day or two, to make sure to keep an absolute minimum of 6 days between doses in the moving phase. If injecting or looking to move from a Monday to a Friday, for example, I was told it’s better to go 8 days between doses and do it that way, if that makes sense, particularly if any of your bloods like liver or white cells are a little bit towards the wonky end of normal.

[Garnacha in reply to Hidden]

Thank you, yes that makes sense as if I leave it till Saturday instead of Friday it’ll be 8 days. If I have the same yucky feeling next week I’ll email the consultants secretary to ask if I can increase the folic acid, I’m hoping tomorrow in Captain Toms words is a good day or it’ll be 5 days of feeling horrible x

[Esmereld in reply to Garnacha]

Might be an idea to get a blood test for folic acid. If it’s really low, it could be the cause of your dizziness. It can make you feel pretty awful. Your rheumy will advise of course when you talk to him/her. I won’t comment on moving mxt day. I’ve been very lucky not to have the awful symptoms that you described and you have loads of great advice already. I have had very low folic acid though. Not nice but easily remedied. Just be careful to monitor the folic acid though. I ended up with too much having taken 5mg every day for a month. Not mxt day of course. For some, it’s standard. For me, too much. Time and time again we reiterate that we are all different. I’m sure you’ll work it all out.

[Garnacha in reply to Esmereld]

Thank you for this, I'm going to the chemist in a bit to collect more MTX / Gabapentin etc 🙄 and will ask them if they think it's ok to take more folic acid, if they suggest I contact the rheumy I may give the drs another ring as I'm waiting to see how I am next week after my next dose of MTX, however, it's Friday and I'm still feeling sick, dizzy and tired. If only I'd seen your message before the dr's receptionist rang me a few minutes ago, I asked if they had the results of my blood tests back from Monday which are only the tests for MTX and they were satisfactory, I was sort of hoping that there was an issue that would explain how I'm feeling, I literally just said to her it must just be the tablets I'm taking, I could have asked her to pass a message to the dr for me to ask about the folic acid. x

[Esmereld in reply to Garnacha]

Hi. I think you should call the GP surgery again and see if you can talk to a doctor. I’m sure they could email a blood form to you that you can print at home. Somethings not right else you wouldn’t have come onto this site. It sounds like low folic acid to me but it might not be. You need to know what it actually is rather than guessing. You could end up overloading. Honestly, I urge you to call your GP. It’s a pain isn’t it!. Bet you’re fed up with it. Sorry.

[Garnacha in reply to Esmereld]

😀 thank you, I just went to the chemist & although they said it would be fine to increase it by one tablet, if it is due to low folic I wont end up with enough tablets on my prescription. she said to ring the drs too as I may need a blood test & if I take additional folic it wont be a true reflection on my blood test results. Just spoke to the drs receptionist whos putting a blood test form for my husband to collect and just booked the blood test for Tuesday, the results will take a few days so I'll just have to put up with feeling like this for at least another week 😔 Thank you again for your advice x

[Esmereld in reply to Garnacha]

Good stuff. At least you’ve set the ball rolling.

[BoneyC]

Take it on whichever day suits you best. When I took MTX orally it was on Saturday (not working next day) then when I stopped working I switched to Mondays, but as long as you take it regularly I don't see what difference it makes, it's your life, you choose.