Methotrexate and stomach issues

[MamaBanana12]

Hi

I'm on oral methotrexate since November (recently restarted in May after a 7 week break due to tooth issues)

And I'm having so much stomach problems, not so much sickness but the other end 🙄

It's making work / life difficult and it's bloody hard enough. If I have a hot meal within 20 minutes I'm stuck on the loo. It's really awful.

Im on lamperozole (sp?) and the folic acid. I have an appt next week, but just wondering if this is normal? It's really ruining me 2/3 days after taking my dose and I worry what it's doing to my insides

Phone up hospital and ask for injections. You don’t have to put up with it.

Thanks, yeah I've spoke to my rheumatoid nurse and she said I had to trial taking extra folic and at different times and then made the appointment for next week.
M they really don't seem to want to give me injections but I'm in my 20s and the RA is debilitating enough without the constant trots 😫😫😫

I'm hoping they will let me switch to injection

Get them to switch you to injections. my DM couldn't manage the tablets but was fine on injections.

I’m sure you will be able to switch. I think it’s common to have to try more folic acid first but haven’t then heard of anyone not getting injections. Think it’s all about funding process as injections cost more.

They want to keep you on the cheapest drugs for as long as possible. My health has been made a lot worse due to side effects of drugs. It is pretty soul destroying. Definitely ask them to check for infection due to immunosuppression though. I had the most horrific H Pylori infection when I was on the tablets. Never had pain like it.

Thanks everyone, glad it's not just me. It's like a constant choice of being able to walk / shit myself and im so sick of living like a 90 year old. It's impacting everything. It's been a vile 2 years

The NHS does not prioritise quality of life, rehab, physio, or any of those things.
They stick rigidly to the drug ladder protocol as the years go by.
I ended up sobbing in the PALS office one day because the appointment people had shouted at me for trying to rearrange an appointment.
I was desperate for a long enough break to visit my surviving child having been very ill since my eldest son died.
I have experienced great kindness from the HCPs who have done my scans, my IV infusions, my blood tests. But in the end I have to crawl very, very slowly up the drug ladder. I had a trial of an expensive treatment that worked very well. I can't have any more until I get a lot worse. That just about sums it up.

The pills made my dds stomach swell up hard and it was so sore. It was much better with the injections. She sadly had to come off it for various reasons, but when it worked it really helped her.

This is awful, so sorry you had to go through that.

While my situation is nowhere near this I really empathise.

It's really hard going I have a small child and was diagnosed 2 weeks after birth and have been a broken woman every since.

I'm sick of fighting and arguing about it with them.

I hope you are doing as well as possible. xx

Yeah it's bloody awful to be honest. My throat is raw for days after taking them.

I really hope they put me on injections. They don't seem to really care about the impact.

Hope your daughter is doing ok x

Hi just a little update after my appointment.

They tried to persuade me to stay on oral and increase folic again and then said to split my dose throughout the day to impact less.

I stood my ground and explained I need to advocate for myself and I know things are expensive but I can't live this way anymore it's not right.

So I'm starting injections. It's not perfect world but something to try and see if it stops the stomach problems.

If not I have a consultant appt soon to review meds again. I'm on sulfasalazine aswell so my pee is already orange and I'm shiteinf constantly it's just one big party 🤣

Nurse was a bit took back but agreed with me! So I'm thankful

One of the side effects of sulfasalazine is diarrhoea.

It's weird because I've been on sulfasalazine for 2 years and never had that problem. It only started when they added in the methotrexate so I don't think it's the sulfasalazine. But probably not a great combination nonetheless

I was on a max dose of methotrexate and folic acid- still had stomach issues. Changed to metojet injection pen an side effects disappeared. Don’t let the fact that it’s an injection put you off -it is soo easy! Never feel the needle at all - maybe a slight nip for a few secs after as the liquid gets taken away by the body. Hugely preferred to pills - a def gamechanger.

Thanks, yeah I'm ok with needles I'm not too arsed. I've had another night wasted sitting on the loo I'm just miserable tbh so il try anything at this stage

Oh this was me just before I got married. I lost so much weight with it I had to buy a new wedding dress.

I feel for you, OP. Injections helped a lot.

I also lost weight with sulphasalazine & hydroxychloroquine.

Watching - I've just got
Confirmed diagnosis today of RA plus pernicious anemia and celiac disease- they want to start me on oral methotrexate- my stomach is already in bits as it is - I'd rather have the injections but they say I have to start on oral meds first .

Can I add some reassurance- I'm on highest dose methotrexate meta-inject and it's painless, easy and have no side effects. Also on sulfasalazine. I hope so much for you that this works. Let us know 🥰

This is good to hear!

I'm just waiting on my delivery as all been signed off by consultant which I'm glad off.

Maybe go back and explain your current situation. I know it's different for everyone, but my dad also has Ra & his symptoms were the same as mine with stomach problems.

I'm still on tablets waiting for my delivery of the injections so I'm still suffering with it but hoping the end of near

Hope your doing ok. RA is just awful x

Thanks, yeah I'm dieting at the moment as need to lose some of the steroid gain and it's falling off at the moment thanks to the issues.

Which I can afford to lose but the constant runs just isn't nice even with the pleasant weight loss side affect if I'm putting my positive hat on