I have been on MTX since early April along with hydroxychloroquine started in Jan - was diagnosed with seronegative RA in March. Changed to injections after bad side effects with MTX pills. I had some suspended weeks off MTX due to treatment for other infections in May/June. My question is about how long you/medics wait before assessing if MTX is working? My stiffness did improve (but did have several injections of steroids and an infusion) but worsening again (hips and ankles stuck this morning) and my fingers have not improved at all. The pain specifically in my finger joints has sharpened in recent weeks and got hotter/ changed in nature so I am worried in case it is joint erosion. I have a Dmard clinic check up with Rh nurse on Fri and due to see consultant in Sept and suspect they will try increasing MTX dose again.
My knees are better than they were but toes worse.
How long do we wait to see if this drug works? When do they start thinking of trying another and what if that doesn't work?
Thanks in advance
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BlightyFiveStar
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The NICE guidelines say 6 months with no improvement equates to failure on that drug. But personally I think you are right to be anxious about a change in pain, so I would push hard when you see nurse. What dose are you on? As nurse can amend prescription so don't have to wait till sept.
Good morning 😊 and thanks for quick reply. I am back on 15 mg since changed to metoject - had been ramped up to 25mg MTX on pills over 4 weeks (from starting on 15) but felt very ill. Dose was Reduced back to 15 for injections on basis it is more bio available, but nurse did mention plan to increase dose again, but that was scuppered by other infections meaning I had to stop altogether on MTX.
I feel sure she will increase dose on Fri but my concern is what if it's not even working? How do they assess for new erosion- is it only by x ray? I can't remember when my hands were x rayed but think they must have been or how could the hospital have told me no joint erosion... if x ray was since diagnosis in March, how quickly can you have another?
Push for ultrasound. Specifically ask the nurse if she has access to a portable ultrasound to check your finger, if not ask to be referred for one. Some hospitals have them in small corners and forget to use them.
This is your health (yes, an obvious point!) so you do have to get proactive. It's not about being aggressive, but making sure you make clear to the nurse how worried you are, and how much you want things to be treated actively. Another trite saying, but if you don't ask you don't get.
MTX had terrible side effects for me. Keep a diary of your pain etc and take it to your appointments. I always give them. A copy of my symptoms for my file so we can refer back to it. You have to take control of your wellbeing and fight this with your medical team. Don't accept drugs that do not improve your symptoms after three months. They will need to be changed. I am now on Humira and reducing prednisolone after 18 months of RA and trying different drugs that gave me see ere allergies. MTXmethotrexate is a dangerous drug that can effect your liver and kidneys if you are constantly wiped out its not good.
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