RA in remission: has anyone been told to stop methotrexate?

Hermione

My RA has been in remission for several years with very few flare-ups, which is great, and I’m just on 7.5mg methotrexate with no adverse effects. Also have osteoarthritis, osteoporosis and Sjögren's syndrome. Last year my rheumatologist made a passing comment that I could probably stop taking MTX. I’m due to see him again soon and am nervous about being told to stop MTX. I’ve tried to read the medical literature and there doesn’t seem to be a consensus about the benefits/disadvantages of stopping MTX when in remission, but one study found that 50% (which seems like a very high percentage) of patients had their RA return within six months. I really don't want the risk of it coming back when I think about how horrible it was at the start and how long it took for the medication to reduce the pain etc.

MTX is not usually used to treat Sjögren's as trials have found it is ineffective, but I am really keen not to do anything that might make this other autoimmune disease worse as it’s already driving me round the bend.

I have also read that MTX gives some benefits for heart health in patients with inflammatory arthritis who are more liable to stroke and heart attack anyway, and my blood pressure is a little high.

The other slightly illogical reason for continuing is that being on immunosuppressants gives me access to the Covid vaccination which I would not otherwise get as I’m under 65. It might be available to buy soon like a flu jab but this hasn’t been confirmed as far as I know.  

I really don’t know what to say to the consultant and am nervous that he’ll pressure me into stopping "to see what happens" when I don’t want to rock the boat.

Has anyone else taken the plunge and stopped MTX because of remission, and were you “offered”, “encouraged” or “told” to stop it?  

Ellen

Hi @Hermione

I see your dilemma. It is quite a scary thought when you have been so stable for such a long time. I can see all your reasons for wanting to remain on the Methotrexate especially as it doesn't seem to be causing you any problems.

Will you take anyone with you for your appointment, I wonder, for support? hope you have people close to you to discuss it with too.

I have done a quick search on remission and methotrexate, but it's possible none quite match your situation.

https://community.versusarthritis.org/search?domain=all_content&query=remission%20methotrexate&scope=site&source=community

Hopefully someone will have been in your situation and can share their own story.

Do let us know how you get on

Ellen.

Hairobsessed123

Hi ! I’m in remission Im off methotrexate and sulfasalazine ! No meds since March 2023 so nearly a year one flare but X-rays and ultrasound show no bone erosions and no fluid inflammation!

So it is possible and I have still been able to have all the Covid vaccines’.

i have psoriatic arthritis and consultant says it can come and go ! I don’t No if it’s the same for RA x

Arthuritis

@Hermione @Hairobsessed123 I fully understand your nervousness about not rocking the boat. I am in the same position as @Hairobsessed123 in that it’s coming up to 1 year without MTX, and I was on a whopping 25mg/week dose, but was able to stop suddenly after treatment with antibiotics for an infection, which I suspect triggered my RA. The infection cleared, removing the trigger, ergo my RA symptoms vanished too. My senior consultant still can’t believe it, ran all the blood & ultrasound tests, and while the blood tests show I will flare if the trigger re-appears, there was no trace of RA on the ultrasound, so he just said let’s see how it goes. In your case it’s a positive thing that your rheumy is prepared to consider dropping it. At 7.5mg it has virtually no therapeutic effect, but try and recall if you have had an infection treated since you were last flaring, as it’s possible you are part of our exclusive Reactive Arthritis club!