Methotrexate side effects

[Pippsy]

I started the tablets a couple of weeks ago along with a high dose of folic acid. I had nausea, fatigue, headache, a burning sensation from stomach to mouth and then mouth ulcers all within the first week. I didn't take the next dose and two weeks later I still feel nauseous. Has anyone had this and how long did it last after stopping the drug? I've a history of stomach issues.
They've said I can go onto injections but I'm really stressed now because I feel sure I'll still get the side effects. Has anyone had this experience?
So fed up that it feels like a choice between joint pain or stomach pain.

I think the gut side effects are usually much less on the injection version.

I’ve been on methotrexate for 2 years and have tolerated it well until just recently, started with stomach issues and mouth ulcers. They’ve upped my folic acid to see if it will help and said the same about switching to injections. As they won’t go through the gut it should help with the stomach issues, I’d give it a try and see how you get along.

DH has to take it but they built up tolerance very slowly starting with a very low dose, and he had weekly blood tests at the start as well.

I had dreadful anticipatory nausea and vomiting with oral MTX. In fact I only to say the word MTX and I still feel sick 10 years on! I couldn’t tolerate and ended up on a MAB trial which was life changing tbh

@Marianwallace I'm on the very lowest dose of MTX (7.5mg) and the highest dose of folic acid.

@Edinaandpatsyrule "anticipatory nausea" that's a good phrase. It reminds me of pregnancy 30 years ago when I had hyperemesis. How was it viewed when you said you couldn't tolerate it? I fear they will minimise it and push me to persevere. Also I am on a lot of medication already and don't want to go down the route of taking more drugs to counter side effects. I', also on hydroxychloroquine and sulphasalazine. They've worked well for years but not quite enough now.

@AgentAshburn how much folic acid do you take? They gave me 5mg six days a week.

@Pippsy : interesting I also had hyperemesis in pregnancy and it is thought this puts you more at risk of issues with chemo etc

Dextromethorphan- one dose with the mtx at bedtime, one in the morning. After a few weeks you can go down to one dose and after a few months you can usually stop.

I had horrendous side effects on the tablets. I am now on a weekly injection and tolerate that pretty well - after the first few weeks.
Folic acid doesn't work for me and I understand that is quite common. I take 1 dose of calcium folinate 48 hours after the injection (has to be prescribed by consultant via hospital pharmacy) and that deals with the nausea effectively.
It is worth asking about the above combo.
The injections come in a prefilled cartridge and are very easy to self administer.

What side effects did you get with the tablets? How long did it take for you to tolerate the injections?
I'd heard of that but didn't know it was available in the UK.
I have an appointment this week with the rheumatology CNS. I have several things coming up in the next few weeks and it's adding to the stress that I will have to deal with side effects as well. I'm hoping they'll let me delay starting the injections, not sure how amenable they will be.

@ThisWiseBiscuit isn't that cough medicine? Did you have a cough or did that somehow help with the heartburn and nausea?

Terrible nausea and vomiting, stomach pain, my stomach just couldn't deal with it.

https://www.hss.edu/health-library/conditions-and-treatments/guidelines-reduce-side-effects-of-methotrexate#:~:text=Some%20people%20feel%20some%20nausea,a%20tablet%20(Mucinex%20DM).

I’m on the injections because the tablets made me feel sick. I have no side effects now.
the pen is very easy to administer and you can barely feel it. I much prefer it, but getting rid of the sharps bins can be a pain, as you need a large one and have to take them to the hospital as nowhere else will have them.

Did anyone else get a burning feeling down the throat to the stomach? Or mouth ulcers? I feel like I got the whole list of potential side effects from one tiny dose (I didn't take a second dose.
It's reassuring to hear that some people had a strong reaction to the tablets and are ok on injections

Wow I thought it was just me with the anticipatory sickness - it’s just so weird! I am on the injections 20mg which definitely helps but the MTX just makes me so tired. Seems to be keeping the arthritis at bay for the moment though

Anticipatory nausea with methotrexate is a real thing. I had it too. Awful.

I'm on weekly injections too (15mg) it works great - tablets made me feel awful, like I had flu hence went onto injection

I have folic acid 5mg 6 days a week

When I had the injections, I took them at about 8pm and slept through any headache - it took about a month and a half until I felt mildly queasy for the first day, but I had to switch to black coffee and pretty much cut out dairy altogether. I also found tomatoes/fruit/anything sweet tasted particularly unpleasant, but found olives and anything else salty and savoury seemed to taste even better than before. I definitely felt worse if I did the injections either later so I didn't get as much sleep or earlier in the day.

I did make a point of regular hygienist appointments with the first one before I started to reduce the risk of dental infection, but did still get mouth ulcers - being absolutely religious with mouthwash (alcohol free - you don't want standard mouthwash on sore gums), then silicone interdental brushes rather than floss (less chance of cutting sore gums), then brushing with a decent Oral B electric and soft bristles reduced the impact.

MTX didn't reduce disease activity as much as hoped and I subsequently changed to biologics, which have been brilliant with far fewer side effects (and less vulnerability to infection), but the actual switching to injections has been a vast improvement on the whole, as I've always been very vulnerable to throwing up on oral medications.

Tell yourself at worst, you'll feel a little bit queasy and might need to alter some of things you eat and drink, rather than it'll be just the same as the tablets.

It's odd how much difference people seem to find between oral and injected. It's the same drug after all.
I asked to go straight onto injections because I had a stomach bleed and severe gastritis two years ago and only got it fully resolved 6 months ago, but was told no, you have to try tablets first.
I took the tablets at night but woke up with dreadful nausea. The fatigue lasted 6 days but I still have the nausea two weeks later.

It is the same drug but the injections by pass the digestive system completely so you don't get the gastritis and vomiting. Still get the headache and nausea but that is only 2 out of 4.

@postop sorry to hear you still get nausea with injections. It's as bad as vomiting imo.

It is much better now, after a couple of years.

@postop 2 years is a long time to put up with those side effects, were you not offered an alternative?

Once you get to my age you aren't offered anything much at all.

I couldn’t tolerate mtx. I tried the jabs instead but they were - unusually - even worse for me. I was waking up choking on mouthfuls of stomach acid many times a night. I think I lasted a month. I couldn’t do more after that.

@thatwastheendofmytether I had terrible acid on the tablets. Not tried the injections yet. Did you get a better alternative after that?
@postop has your rheumatologist said you have no choice? Is this in the UK?