I have recently had my MTx dose reduced from 20 to 17.5mg but I’m worried it’s not as effective. My fingers have started getting hot, but they’re not stiff. Just not sure whether to tell my rheumy nurse.
Also seem to be feeling really rough the day after injection which is weird as I never used to on the higher dose. Anyone else had issue?
Thanks
Emma
I’m working my way down, and have got to 12.5mg. Each time I drop a dose I feel a bit odd for a couple of weeks.
Hi Wozza . I have had a similar problem. I was on 20mg injections. The next day would wipe me out then it was 2 days until 6 out of 7 days I was useless.(once slept 36 hours solid) I was told to take a MTX break ( about 6 weeks) the restarted on a lower dose and gradually got to 15 . I’m still on this dose and am wiped out for 2days. I just can’t tolerate a high dose so they added other drugs which was trial and error and currently on baricitnib as well 🤞it’s looking good.
Sorry long winded but if you can’t tolerate the high dose then they can add to the MTX. Keep in contact with your team they need to know how things are going. It’s a giant jigsaw piecing things together so the more they know the more they can help. Good luck.
Glad you’ve got the right combination now 💗
I started on 20mg, but after a month it started to affect my liver. I’ve been on 10mg now for over a year - and like you, it’s definitely not enough to control my RA properly, so they added in Hydroxychloraquine, and after 4 weeks I started bleeding from the bowel, which after a CT scan and colonoscopy, they think it might have been the meds which caused it, so have stopped taking Hydroxy.My rheumatologist has told me she doesn’t want to try me on different meds yet and is waiting until I have another ‘flare up’ 🤷♀️ which is totally bizarre.
I am also exhausted the day after my MTRX and that’s only 10mg.
So yes, I think you should say something to the nurse, maybe they will add something in. Hydroxychloraquine was working for me until my bowel issue, for the 4 weeks I took it I felt great, full of energy.
Good luck, I hope you find something that works. 👍
My dose gradually reduced to 25mg from 12.5mg. There were wobbles on the way, but it all sorted itself out after a while. Maybe keep a symptom diary for a month. That may help you and your care team to review the dosage. All the best.
Hi Wozza - I was on 20 mg a week for 2 years and reduced it to 15 mg three months ago. My joints are stiffening up a lot recently but at 82 it might just be age- so I'll put up with it until I can't get out of the bath!
What is your Disease Activity Score? (DAS28)? While DAS may not be the ideal indicator of disease activity it is the best that is currently available and plays a significant part in the decision making of what treatments to progress people with active RA onto next. To find out more about DAS nras.org.uk/resource/the-da....
I don’t really know Clare as haven’t had a face to face appt for over a year for obvious reasons. I think I had been in remission for a while which is why they lowered my mtx...
Hi Wozza. I tried reducing mtx from 20 to 15mg in the summer but eventually had to give in and go back up the doses as my knee pain started to increase 4 weeks after reducing the dose. I gave it another few weeks on the lower dose to see if it settled, but unfortunately not.
Thank you for all your replies. Does anyone know when we are down to get our covid vaccines? I can’t work out which group we are in!
Hi WozzaM, I started with 15mg then got up to 20 mg after a year and a half later. My rheumy added 20 mg leflunomide to me after a year of treatment. When mtx dose was increased to 20 mg, my liver was not able to take it and the results were bad for a few rounds of blood test. Then my rheumy decided to reduce mtx to 15 mg. At that time my RA was already in good control, I have been in good health since Nov 2015.
Hope you are getting better.
Adding caffeine to reduce ill effects of mtx!
MTX side effects
