I’ve got an appointment with the rheumy nurse in the morning, and I’m due to start MTX (just on Hydroxy and NSAIDs at the mo). Has anyone got any words of advice, please? I’m not looking forward to it, and I’m especially wondering if it’s wise to take it on Mon morn when I’m working Tues-Weds-Thurs and also have a job interview on Weds…
I took my first dose last week I took it at night. I felt a little spacey the next day but of course it will effect everyone different. I already can feel a little queasy in the mornings and don't usually eat breakfast so night seemed better for me.
Thanks Scienceteach. That sounds like I felt when I started Hydroxychloroquine. If MTX is no worse, I can handle it.
Are you injecting or taking the pills? I would do neither until Thursday evening so you'll have a recovery day on Friday.
My experience was I first took the oral meds on a Friday evening; about 1.5 hours later, I had GI issues, which continued. I missed work on Monday, when I couldn't lift my head off the pillow on Tuesday because I was still sick, I called my rheumy and said NEXT!
By that Friday (in time for my next dose), I had injectable MTX. I have to warn you, most, if not all, Saturdays after that were fairly lost days. I usually woke up late in the morning and took a long nap in the afternoon. I just couldn't do anything that day. I was that way on some Sundays also.
I also never got rid of the GI side effects in the nearly 14 months I was on MTX. Make sure your rheumy gives you extra Folic acid--it helps a bit with the hair loss and your loss of Folic.
My first rheumy had me take mtx on a Monday and folic acid on a Friday. I figured he though this easiest to remember. I soon swapped it round so I had help from my husband in my business over the weekend while I "recovered". Seems like I may be starting it again, this time round I'm going to start the folic acid first (as high a dose as they will allow) then the lowest dose of injectable mtx which I'll inject probably late afternoon. This time round I plan on maximum water intake on injection day and the day after to try to manage the nausea/fatigue better. Even though I've done this before and know I need more folic acid and more water I expect it's going to take a bit of experimentation to get just right for me. I've 'manned up' alot since those days!
If they want you to start with tablets and you can't negotiate injections at this point then maybe ask about the slowest possible titration up to the therapeutic dose. I often wonder if they took it more slowly, like with sulfasalazine, more people would find it more tolerable. But water/liquid is my best advice, as much as you can drink. For me I actually found eating little and often helped the nausea the most, ginger biscuits were very helpful.
It is totally reasonable to need to accommodate other things going on in your life around medication, especially when starting something new. Best of luck flow, I think you may well be absolutely fine and have no problems at all. Maybe it's just sensitive tums like mine that went "hey, what the ****?"
You should know what happened to me, flow.
I took my first dose. Nothing.
I ramped up to 25. Nothing.
I switched to injectable. Nothing. Take it every week. Nothing. Nothing. Nothing.
Didn't help either. But apparently it helps prevent the immune sys from producing antibodies to reject the biologics.
People are quick to tell the MTX horror stories (and they are real!) but most of the people who have no reaction don't even read these threads! So don't get your knickers all in a twist about starting this. :-) You may well find that it's a non-event. Let's hope!
Thanks all of you (especially Seenie! ;) ) I'm glad at least one person came along to say they didn't have an awful reaction to it, because I've heard a lot of horror stories!
I don't know for sure whether I'll be given tablets or injections, but I think the NHS starts most people on tablets, and that's what you stay on unless you can't, um, stomach them. It does sound like it would be wise to leave it til Thurs though - the last thing I need is an upset tum on the day of a job interview!
Hey Flow
I have been on 10mg of Methotrexate for 3 weeks.I felt a little off after the first two doses,but today,so far so good.
I hope it works for you with minimal side effects.My Rheumy is having me do blood tests fortnightly for 6 months to monitor.
I know that when I used MTX before I started a biologic it did nothing on its own so I moved on to a different DMARD with much greater success. I also learned that if I had to use MTX again to support the biologic it would have to be by injection. Hopefully it will work well for you.
Thanks ouch, that’s good to know
ouch said:
Hey Flow
I have been on 10mg of Methotrexate for 3 weeks.I felt a little off after the first two doses,but today,so far so good.
I hope it works for you with minimal side effects.My Rheumy is having me do blood tests fortnightly for 6 months to monitor.
Thanks Stoney
Stoney said:
I know that when I used MTX before I started a biologic it did nothing on its own so I moved on to a different DMARD with much greater success. I also learned that if I had to use MTX again to support the biologic it would have to be by injection. Hopefully it will work well for you.
Ouch sounds like me I am on 10 MG oral. This Wed. is my second dose. I felt really spacey last week not sure if I will again though.
flow said:
Thanks ouch, that's good to know :)
ouch said:Hey Flow
I have been on 10mg of Methotrexate for 3 weeks.I felt a little off after the first two doses,but today,so far so good.
I hope it works for you with minimal side effects.My Rheumy is having me do blood tests fortnightly for 6 months to monitor.
Just back from the clinic - I’ve been given 15mg MTX oral to take once a week, plus 5mg folic acid to take 3x week. I’ll take my first dose Thurs eve - fingers crossed! Thanks everyone
For the folic acid, if you have side effects from the MTX like mouth sores, the folic acid can be increased.
flow said:
Just back from the clinic - I’ve been given 15mg MTX oral to take once a week, plus 5mg folic acid to take 3x week. I’ll take my first dose Thurs eve - fingers crossed! Thanks everyone
Good to know, thanks Stoney.
Stoney said:
For the folic acid, if you have side effects from the MTX like mouth sores, the folic acid can be increased.
flow said:Just back from the clinic - I’ve been given 15mg MTX oral to take once a week, plus 5mg folic acid to take 3x week. I’ll take my first dose Thurs eve - fingers crossed! Thanks everyone
Don’t stress too much - I was absolutely fine - always tired the next day and annoying headaches but started folic acid 5mg x 6 days and eventually very minor side effects went. I started with pills but switched to injections
I started slow on the mtx, was up to 15 mg. I also take 2 mg folic acid daily. I have had no side effects from it. I am back down to 10 mg of mtx since I started on the Enbrel and am still doing fine. I hope that you have success without the side effects.
Thanks Golfnut and Goofy Pirate
First dose down, about an hour ago!
12-image.jpg (1.31 MB)
A picture of MTX ... LOL, flow, we believe you! Now don't be sitting around waiting for the excitement to start, because if you think about it too much you're going work yourself into a state.
I hope, though, that you've had something comforting to eat, and that you're drinking lots of water.
Good luck! And let us know how it goes.