Don't think MTX for me (anyone else)

[bora62]

Stopped MTX ,didn't take this week and that's it for me...started it October/ November last year,on my 5th cold and what colds they have been,lingering way past week into 2 and 3 ,so not much respite between, as well as sickness, feel in a constant state of illness lol...no sleep coughing, hurting throat (not good as a singer lol ) sooo much mucas (Sorry) only been on 15mg and helped pain in hands but as you know doesn't touch pain of osteo in all other parts...went to hospital other night had episode of tachycardia which was quite a scare too...Sorry long post but asking if anyone else had these probs on Mtx, also haven't "fancied" any food for a while either ! Can't believe how unwell I've been,I think immune system is compromised at moment,see rheumy Monday get his opinion but for now bye bye MTX cheers

[Mmrr]

I've experienced some of the side effects you list and some others too, mainly gut problems. I struggled on for over 11 months before I eventually stopped MTX. Partly because I wasn't believed re: my RD ( the ego's of the medics ) and partly it DID help my RD . I feel so much better off MTX and have started biologics. If you feel it is not worth it, then you have made the correct decision. Don't be bullied by the medics to restart, unless you want too.

[Mmrr in reply to Mmrr]

Sorry, I should've said whilst I feel better off MXT, my joints are worse. still waiting for biologics kick in.

[oldtimer]

Lots of people seem to do really well on methotrexate. I was really reluctant to come off it but had unacceptable side effects personally and then the dentist said firmly that he thought I should come off it which tipped the balance for me. It does seem amazing how differently people react to the various medications - but then this is a standard treatment for what is far from a standard illness!

[Soreknees2016 in reply to oldtimer]

Can I ask what it was that prompted your dentist to recommend stopping mtx?

[oldtimer in reply to Soreknees2016]

I had enormous mouth ulcers as well as vomiting and diarrhoea.

[Soreknees2016 in reply to oldtimer]

Thank you - that sounds grim. I was asking as we had a thread on here a few months ago about any possible connection between RA/PsA/mtx contributing to erosion of tooth enamel and increased sensitivity (my dentist and rheumatologist both say no). Hope your change of meds resolved your issues.

[evie04 in reply to oldtimer]

5mg Folic acid needs to be taken every day except day of mtx. This prevents mouth ulcers and other issues. I have been on 15mg mtx for last 11 years. I take half dose in the morning and half dose 12 hours later as advised by my rheumatologist. I have also been taking Benepali for last 18 months.

My body feels great.... no swelling or stiffness but I have been getting more colds than I did before starting Benepali.

[Mmrr in reply to evie04]

I've just come off MTX due to side effects , I've taken 5mgs folic acid 6 days a week since day one, but still got mouth ulcers and mucositis amongst other gut issues. Prescribing folic acid is wide spread by medics, but the evidence is actually a bit weak that it prevents the side effects.

[evie04 in reply to Mmrr]

I hope you find the right solution for you moving forward.

[notsochunky]

I stopped mtx tablets after six months and after a month of pain from hell went onto leflunomide. I still wonder should I have tried injections, but I know deep down stopping was the right thing for me.

[Kerensa21]

Same here, was on it for just over a year: made me utterly miserable: nausea, lack of sleep, depression, brain fog. Feel like me again since coming off it, actually sleep through night now on benepali so 🤞it carries on working (minimal side effects too) hope they find you something better x

[Hidden]

Hi, I take 20MG of MTX weekly. Yes, it does cause me some gastric issues - dyspepsia/nausea, as well as sinus and skin issues, they are not enough to make me feel that the issues outweigh the benefits - yet

[Nanna71]

I have been on MTX since November 2018 - so not too long - with no appreciable side effects now. I had a few mouth ulcers which salt water rinse took promptly away, and hair loss, which doesn't hurt and also seems to have slowed or stopped. 15 mgs is what I am up to, from 10. Still was in pain so sulfasalazine added at 1000 mgs, now 2000 mgs. Plus am trying to wean off prednizone 15mgs. Still not happy with the results so am going to see what next on Friday.

Pain level is somewhat unbearable in the morning but disappears by about noon. I wonder what that's about?😮

[bora62 in reply to Nanna71]

The pain is horrid isn't it, but unfortunately the constant cold which I feel has never left me, makes me feel really unwell most of time and really hard to go to my part time job, coupled with the sickness, I don't feel I get enough positives from the drug to keep taking it, for me negatives outweigh the benefits.. also because of the osteoarthritis as well pain is awful from that and MTX didn't touch that so all in all not work taking it. Hope everything works for you x

[Hidden]

Maxbella1007, Hello, I did not have your symptoms, I had hair loss, my hair is not as curly (I have natural curly) constipation and scalp psorisis. I have psoriatic arthritis, methotrexate did help with the arthritis. I also stopped taking it. Was on it for about one and a half hrs. I also had one dose of Reclast infusion, also stoped this.

[nomoreheels]

Hiya bora62. Talk it over with your Rheumy, it sounds as though you're not happy taking MTX. It's not particularly suppressive on the immune system so doubt that it's having much effect on fighting the cold or the cause of it. My h still hasn't got over the virulent one that was around before Christmas, though I have & I'm on MTX. I think it depends on how receptive you are how each person's body responds & fights a particular strain, or even strains. One of my friends has had multiple colds this winter, just getting over one when another troubles her & she's otherwise healthy!

There are other DMARDs your Rheumy can prescribe, each come with their own possible side effects as with any med but again it's different for everyone. None will help your OA as you know, that should be treated with NSAIDs & pain relief plus exercise. Unfortunately there are no meds to target it like there are in RD. I have both & OA is the one I take most meds for, mainly because MTX works so well for me thankfully. The side effect I have a tolerable but I do take folic a acid every day except the day I inject.

See what your Rheumy reckons, see if he/she has any ideas that will help you. Meantime I find a hot toddy made with honey, freshly squeezed lemon & some finely grated ginger very soothing with a cold.

I hope you feel brighter soon.

[bora62 in reply to nomoreheels]

Many thanks for your kind reply, it could be coincidence but I only have usually 1 cold a year, this is now my fifth and feel awful with them, the first two couldn't breathe properly as well, also the general sickness and unwell feeling is hard to put up along with general exhausted all time, all seems to be since starting the drugs so at moment only them to blame lol, again thank you

[Hidden]

It wasn't for me either. I took my last shot last Friday. I had been on it for over 5 months, and I had no change... only awful side effects. My rheumy is putting me on cortisone shots and hopefully Orencia soon. I hope you feel better. hugs