Stopping and restarting methotrexate

[Spaniellady]

Hello, a couple of questions for you lovely people:-

Has anyone stopped mtx due to side effects then restarted it at a lower dose and tolerated it?

Can Hydroxychloroquine alone control RD?

I stopped Methotrexate 2 weeks ago due to a host of side effects; sore throat, dry cough, difficulty breathing, extreme fatigue, mouth ulcers, constipation, nausea, etc that had been gradially getting worse over the previous 8 weeks. I was only diagnosed in Feb and started mtx in March and was on 20mg. It was the diffuculty breathing that finally made the rheumatologist tell me to stop and take a break while the symptoms subside. I'm still on 200mg hydroxychloroquine. Since stopping all the side effects have gone and I feel better than I have in months. The doctor issued me predinsolone in case I flared, but haven't taken them as I am okay atm. The plan is to restart mtx at a much lower dose to see if I can tolerate it. Must admit I'm dreading restarting it as the side effects are so horrible, so really wondered if anyone has had success restarting at a lower dose.

Many thanks.

[Mmrr]

Sorry, but I didn't tolerate MTX second time round at a lower dose. I'm now on biologics. It might be worth giving it a go as I did, if only to securely say I can't tolerate it and don't want to try a third time. I was told to contact Rheumatology uf i had tolerance problems, which i didvery quickly.

[Spaniellady in reply to Mmrr]

Thank you. Worth a try as you say, but that's what I feared.

[Barrister]

Yes, I did! It made me feel very unwell so was stopped. I then started biologics which I eventually developed antibodies to so had to change biologics and, in order to try to prevent developing antibodies to this one, I started MTX injections at 10mg and I’ve had no side effects. I’m just about to increase to 12.5mg as still getting flares but as I’m having shoulder surgery next week, I’ve had to wait a short while for that.

Clemmie

[Spaniellady in reply to Barrister]

Thank you. That's interesting that you tolerated a lower level when injected. I wonder whether that was a longer time had elapsed. Good luck with the shoulder surgery.

[Hezekiah in reply to Barrister]

Hi Clemmie, I was interested in what you said about developing antibodies and therefore needing to change biologics. I have long been aware that many people are advised to take MTX as well as their biologic. May I ask how you, or your doc, gets to know/believe that you have developed antibodies (sorry if this is a silly question or has been covered elsewhere on the forum). Cheers

[Barrister in reply to Hezekiah]

Not silly at all. I was on Humira first which worked really well for about 14 months then suddenly it stopped working and I went into a massive flare - the pain was unbelievable! The Rheumatologist just said that he believed I had developed antibodies and to change to Enbrel which again worked well but then started to be less effective so he suggested I take Methotrexate but via injection to relieve side effects and it has worked pretty well although I’ve since changed to Benepali and I don’t think it’s as effective but they won’t prescribe Enbrel where I am so having to increase MTX.

Clemmie

[Hezekiah in reply to Barrister]

Many thanks Clemmie for your reply. Yes, I can understand that if the Humira had worked well for you, and suddenly it stopped being effective and you flared, that that is a good indication of antibodies developing. Thanks again.

[charisma]

It varies from one person to another and depends too on the severity of your particular disease.

I had MTX for 16 months, had to stop at intervals due to lowered white cell count, infections and other side effects eg after 3-4 months, lowered mood with weepiness.

Finally quit in May 2018. There are other DMARDs that might suit better for you. Hydroxychloroquine, for me in conjunction with MTX orally or injected, seemed to help.

There might be some for whom that drug alone suffices.

Good luck with disease control.

[Spaniellady in reply to charisma]

Thanks charisma7aj, if you quit in 2018 does that mean your RD is in remission or have you moved to a different drug. X

[charisma in reply to Spaniellady]

Went onto leflunomide. Now waiting for biosimilar. On oral steroids meantime. It can take a while to find something that works at a dose that can be tolerated.

[Elmo333]

Yes, I had to stop and start again. I cannot tolerate more than 15mg injections. Anything above that, I feel so sick. Definitely worth a go

[Spaniellady in reply to Elmo333]

Ah, okay. Well it's wortha try. Thank you.

[Angels54]

Hello I was on it stopping and starting it I felt quite breathless, I actually stopped it myself as the tightness in my chest got worse, be aware if you sre having constant side affects let your rheumatologist know , I am now on Sulfasalazine.

[Spaniellady in reply to Angels54]

Yes, I feel so much better atm now I'm not taking mtx. It's been 3 weeks since I last took it. Beginning to get some swelling, but nothing major. I see no point in taking a drug that renders me horizontal with the side effects, but also the aware I need to try it at a lower dose first. Do you tolerate Sulfasalazine better than mtx?

[Angels54 in reply to Spaniellady]

Yes Sulfasalazine doesn’t seem as powerful as MTX I don’t get burning feeling and tightness in my chest .

[Spaniellady]

Thank you. That's good to know.

[JFlay]

Hello Spaniellady,

I started on MTX (orally) in January, my first/only DMARD. Took it for 20 weeks and had similar problems to you, rheumy told me over the phone to stop it, not had it since 12th June. Feel so much better in myself but RA symptoms are creeping back now. Have to wait until the end of this month for my next appointment. I'm wondering too if they will say to try lower dose injections 😟 which I will try but I feel anxious about it.

[Spaniellady]

So you've stopped a week before me. It'll be interesting to see what the rheumatologist says when you see her. I haven't flared either, but RA is beginning to creep back too, but it's negligible compared with before I started the med. I'm wondering whether it's the hydroxychloroquine keeping it under control. Dreading going back on mtx.

[JFlay in reply to Spaniellady]

Yes it probably is and also the MTX stays in the system for weeks. I'm dreading it too!

[JFlay in reply to Spaniellady]

Hi, saw rheumy today and have been prescribed Hydroxychloroquine 😂 so will only be on that, hope it works.

[Spaniellady]

Good luck! The hydroxychloroquine on it's own hasn't been enough to keep it under control for me. Joints have been getting progressively more painful, so started Prednisolone again on Monday. I restarted MTX at a lower dose two weeks ago, to see if my body will tolerate it. If I start having problems breathing again I'll stop it straight away... If I can't tolerate it, at least I will know that I've pursued all the avenues with MTX before going on to the next drug!