Has anyone out there been taken off Mxt by their rheumotologist because they have no symptoms and blood tests are all normal?
I've been off trex for 5 months but suffering chronic fatigue, saw my rheumo this week and she's stopped the treatment, said rheumos dont continue the treatment once a patient shows no signs of RA. She told me to see her again if the symptoms reoccur. She could'nt help me with the fatigue part of it.
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trexhater
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Ty for replying and yes I agree. However I was taken off it by my first rheumo also 1 yr after treatment and no symptoms. I stayed off it successfully for the following 9 yrs until it resurfaced about 3 yrs ago. Been on it since then with this new rheumo. Wondering if she stopped it because of the fatigue. Hard to get anything out of her. Seeing another one for a second opinion in May.
my husband came off it himself because of serious side affects - his neurologist advised to stop all Dmards and his symptoms weren’t bad enough for biologics - his rheumatologist discharged him along with a nasty letter as he wasn’t happy the rheumatologist also blasted the neurologist - husband found a Professor of Rheumatology at another hospital who looked at his blood work and examined him saying the RA was in remission and some of his pain was osteoarthritis - that was in 2015 and he’s still in remission - he controls the pain with naproxen and paracetamol (the pain he still had on methotrexate) he’s 73 now and doing ok but the side affects from years on Dmards are still causing him issues - we’re all different - I wish you well on your journey
I was in remission for a few years, and my Rheumy suggested I tried coming off it. I tried twice for 6 weeks and ended up with all my symptoms back ! I’m only on 7.5 mg by injection, but it obviously works for me. I couldn’t wait to get back on it and as far as I’m concerned suffered unnecessarily
i was in remission for years with good bloodwork, but every time we reduced the dosage of drugs it can roaring back within weeks. So they were increased again.
Have you talked to your GP about the fatigue and had basic tests first anaemia and vit D recently?
I have mine taken of since nov as my blood test came up normal and she gave phone appointment after 3 months and had asked to do blood test just before the appointment. My doc called me and said the blood test are still normal so I am off my medication all of them and have told me to come back if symptoms reoccurs.
This question is a common one. What to do while in remission - stay on the meds. or stop the meds?
On the whole I believe I’m right in saying that most rheumatologists would be against stopping altogether - but dropping the dose is mostly approved. That does make sense if you think of it. Should the wretched symptoms return with a vengeance, starting the medication from scratch may not be as reliable as just increasing the dose.
I’ve been lucky to have had many years of remission but have never stopped methotrexate in the 28 years of taking it. But many sufferers wouldn’t agree with this because their experiences have been different. And perhaps personal experience - and even instinct - is not such a bad thing; but we are dealing with a systemic autoimmune disease with a nasty habit of lying in wait ready to pounce!
As already pointed out in this thread rheumatoid disease is often accompanied by iron deficiency anaemia. This can cause immense fatigue in itself without the additional fatigue of the rheumatoid problem. So make sure that isn’t your case by having the appropriate blood test. ]
A rheumatologist years ago advised me to take a daily Vitamin C tablet - the Vitamin C helps the body to absorb iron.
Not quite tte same as you but I was taken off mtx due to neurotoxicity and put on Leflunomide. I was subsequently taken off Leflunomide due to severe side effects and all meds stopped because I had no symptoms of RA (the Leflunomide had been working).
I had a return of RA symptoms after 3 months without meds and have just started taking Hydroxychloroquine. Seb.
I agree. The fatigue has improved a lot, I am functioning pretty much as before except for the dizziness which GP or rheumo cant explain so no treatment as yet for that. Ty for replying
I think your rheumatologist made a wise decision. Mxt has side effects. It can harm your liver and may cause fatigue. No point in taking it if no signs of RA. I stopped taking it as it did not suit me. Eat a nutritious Mediterranean diet. Try to get a good balance of exercise, rest, and sleep. If you still have fatigue it might be related to something else.
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