I have taken 2 doses so far but am due to take my 3rd tomorrow. Today I have developed a really sore throat and sore mouth. Don’t think I have a fever or anything. Should I take my dose tomorrow or go to a walk in clinic on Monday to check??
Any advice gratefully received
I would hold off until you talk to your doctor. But I'm also wondering if you are taking folic acid? You can easily get mouth sores if you take MTX with no folic acid. The walk in clinic would just tell you to talk to your doctor, unless you are questioning if you have strep. They won't advise you re. the MTX.
Thanks Stoney. I’m taking folic acid and have even taken more than he said as was having side-effects. My rheumatologist didn’t give me any info at all re: methotrexate so not sure he’s gonna be much help (if I can get to speak to him). I guess I’m just trying to figure out if I have some sort of infection and rheumatologist doesn’t do bloods, just send me to the walk-in clinic! Will see how it goes and give him a ring on Monday
Thanks Sybil
Yes doctors are in short supply here in montreal, especially at the weekend! I think it’s ok to take mtx a a day late so will ring rheumy and speak to his secretary to check (he doesn’t have a nurse). Honestly I’ve only seen him once and he said you have psa, take this - that was basically it! Wasn’t told anything about drinking, side-effects, etc. it’s my own fault for not asking but was in a bit of a spin!
Golfnut, your idea of calling your rheum sounds sensible to me. You always have the option of going to the walk-in clinic and asking whether it looks like a possible SE, or an infection (and nothing to do with the mtx).
Did yourpharmacist not fill you in on the mtx-scoop?
Nope - not given any info at all! Quite strange! They don’t even have warnings on them to avoid alcohol!!
Anyway woke up today and sore throat had completely gone - took my dose and now have the usual stinking headache (which lasted for a whole week last week)! Will give it some time, but if this persists, we may need to consider some other options …
Thanks to all of you for your advice - I know you can’t give medical advice but sometimes common-sense advice is just as good
I'm on 5mg folic acid a day each day except after my MTX dose, when I take 5mg leucovorin calcium- another form of folic acid. I still get some small ulcers in my mouth, but the high dose of folic acid keeps the worst of the MTX side effects at bay.
It does get somewhat more bearable after a while. It's a beast of a drug, though. Like a nasty three day hangover each week! I hope you can get through this initial phase, and do ask how much folic acid you can take without diminishing the efficacy of the MTX.
That's lovely for you, and all those others! It's been a very difficult drug for me, at times, but it's bearable if I take care, drink plenty of fluids and rest, etc. People definitely have different experiences, and I was simply sharing mine.
sybil said:
For some yes, but not for all by a long chalk. I was on 25mg for ages without any noticeable side effects and going by others' experiences here that's not uncommon.
rosen said:It does get somewhat more bearable after a while. It's a beast of a drug, though. Like a nasty three day hangover each week! I hope you can get through this initial phase, and do ask how much folic acid you can take without diminishing the efficacy of the MTX.
Oh thank you Rosen - good tip about the folic acid! I will ask if I can take more.
I am trying to drink lots of water but I’m sure I could be drinking moore. It’s soo useful to have your advice …
No problem. I thought I was going to have to stop using it when I didn't do well with 2 or 3mg of folic acid as a supplement (still had ulcers and some hair loss starting) but once I got up to 5mg and started the leucovorin, it got way easier to tolerate. I can even do things the day after, now, though I have way way less energy than other days and have to watch the nausea.
Thanks Rosen
Symptoms aren’t so bad this week but taking 3mg of folic acid - unfortunately mtx is as yet doing absolutely nothing and I am in very bad pain - I know - it’s early days, but every day is a struggle to get through. Am gonna up dose to 6 tablets this Sunday which is what rheumy prescribed - I just decided after reading to ease myself in slowly! Hope you’re all doing well and prepared for the holidays! I’m not - loads to do but too exhausted …
I'm sorry things are so rough, and hope that you can get through the holidays with minimal stress. For me, the MTX took so long to start working that I thought it wasn't doing anything, which I've since discovered was very wrong. My arthritis is still something to contend with, but my skin is totally clear.
Have you thought about using the injectable form? It's an insulin needle and feels like nothing, no sting at all to the med.
I was initially going to use injections, but trying to get them done here was a nightmare! Why I just can’t do them myself I don’t know (I am a type 1 diabetic) and very comfortable with injections!) I hope to switch over after my next appointment with rheumy in January. How long have you had arthritis? Are you mostly under control now??
I hope we all have a stress-free holiday!?
I've had the arthritis about a year, and it's not under control but I'm learning the ins and outs of it and feel like it will be under control at some point. If that makes sense?
I'd seriously recommend the injections- I have heard over and over that it's way easier to deal with than the pills.
Well dose 4 taken on Sunday - 2 day stinking headache (almost like a migraine) that I just couldn’t shift! Taking 5mg of folic acid x 6 days a week. Also the 2nd day after taking, I seem to flare up all over my body and am in excrutiating pain everywhere! Didn’t expect it to help (quickly or at all) but didn’t expect it to make everything worse!! Rheumy is of course on holiday for next couple of weeks so will give it one more go next week and if symptoms are the same, will have a week off.
Hope you all have a very merry Xmas and are pain -free enough to dance the night away!!
Hi, I only took oral methotrexate but your experience sounds similar to mine. The sore mouth and sore throat could be from Yeast, thrush, candida (sp?). All of the DMARD’s obviously impact your immune system, which may result in an overgrowth of unwanted bacteria. My rRhemy recommended that I continue treatment so long as I did not have flu like symptoms or a fever. If I had a significant virus impacting my upper and lower respiratory system for more than a couple of days he would have me hold off until it cleared before continuing the methotrexate regimen.
Hi Golfnut,
If you are getting mouth sores... it is a "serious" side effect to the drug. My GP made me stop taking Mtx due to a swollen upper lip which is still sore and swollen even though I have not taken my dose this week. I was taking folic acid weekly.
I have read that others were prescribed 5 mg of Folic Acid 6 times a week.... I was not ... only 5mg once a week. Maybe taking more folic acid would have helped... but I understand that mouth sores can lead to a very serious side effect if not treated...
Here are the serious side effects and less severe : http://www.webmd.com/drugs/2/drug-3441/methotrexate-anti-rheumatic-oral/details/list-sideeffects
Personally I would stop taking Mtx.. if your mouth is sore .. and you are in doubt...
My GP said for me to come back if my mouth gets worse .... he recommended I stop taking the drug and take a antihistamine daily .. which I am doing.. (does not seem to help)
Cheers
It's not a good idea to stop medications without talking to the doctor. Mouth sores can indicate a problem, but what problem is not something easily determined on a support website.
I can't believe I'm advocating for methotrexate, because it's the bane of my existence for 2-3 days each week, but it's really helped me a great deal even with ulcers in my mouth and GI tract.
rosen said:
It's not a good idea to stop medications without talking to the doctor. Mouth sores can indicate a problem, but what problem is not something easily determined on a support website.
I can't believe I'm advocating for methotrexate, because it's the bane of my existence for 2-3 days each week, but it's really helped me a great deal even with ulcers in my mouth and GI tract.