Been on sulpasazine and methotrexate since June. I have increased to full dose 25mg methotrexate 2 weeks ago so they have gradually upped my dose . I still not really finding any relief . Whilst not all joints are painful everyday , my hands are becoming difficult to use and have hand weakness . Mornings are really bad and often don’t improve for hours and some days ok ish to manage but uncomfortable all the time. Was I. Steroids for 7 weeks prior to starting the meds and all my shoulder pain heavy arm feeling went away . Now all back and wakes me up every single night can’t remember having a good night sleep every night is uncomfortable and I question is this what I should expect for the rest of my life. Some days feet painful sometimes across the top but mainly underneath and I grip my teeth through it. It’s really getting me down.
move read about luflomide has anybody had this I place of methotrexate . Sorry long message x
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Teddyboy17
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Are you taking mtx tablets or injection?I was told that 25 mg mtx injection is more effective than tablets.
I was still on prednisolone in the early stages of treatment, tbh I'm still on it now six years later.
All these meds take a long time to see if they are effective, around three months for most.
However, you should not be in constant pain and struggle. Speak to your rheumy nurse about getting a review and your GP to see if they can prescribe better pain relief.
No, this shouldn’t be what you have to expect , although there doesn’t seem to be any way round thestage of trying different medications and combinations and waiting weeks and weeks to see what works! But let your rheum team know - if they don’t hear they’ll assume things are going well.
I started methotrexate in January this year, after being diagnosed in December last year. I stuck with it for 8 months but eventually told the consultant that I felt I couldn’t cope with the side effects any more. I’m now on Leflunomide and have been for a month now, alongside hydroxychloroquine. Touch wood 🪵 I’m getting on okay now without feeling anywhere near as bad as I was on methotrexate. I haven’t noticed a big reduction in joint pain yet but as with most RA meds, it takes time 🙄🙄
Sorry your sleep is so bad, being chronically tired is awful 😞😞
Methotrexate increases can take a bit of time to kick in…..but do ask your rheumy nurse to check your hands for Osteo arthritis …..that can creep up on you…& need some extra pain control.
Hello Teddy, I was in the same mix for over two years after I was diagnosed 14 years ago. It took a long time to really kick in , but it did and it helped greatly. As for the future, 4 years after diagnosis I was in remission and still lead a full active happy life. With lots of new medications available since 2009 you have an even better chance to achieve just that.If you don't already know about the National Rheumatoid Arthritis Society NRAS, I would highly recommend that you get on their website. You'll probably find many answers to questions you may have and some you never thought to ask.
Hello Teddyboy feel for you reminded me of my early days getting treatment sorted, and in my system.
The first year is a roller coaster but things settle and you learn how to manage the condition to be able to live a good quality of life. The pain is awful and I'm not surprised you feel so down I was the same. As already said by ones on here 2 weeks is early days usually about 3 months. Course it may not work and you may need an alternative.
Do you have access to an advice line to the RA dept? I use this to contact the department & get a response from a specialist nurse either same or next day. They can discuss pain management , if, when the meds will start to work. So don't suffer try contacting someone to help you.
I'm on Sulfa and MTX. MTX for about a year, quickly through the doses to 25mg then adding the sulfa back in spring this year. It wasn't until I was swapped to injected MTX that I really started to feel better (that was in Aug). It's not perfect and I know the arm/shoulder pain so well but it's now manageable and at least I can sleep. It's only if I'm trying to do things that mean moving my arms up that it really starts to ache. Hopefully this combo will work for you in time.
Edited to add. During this time, my rheumatologist advised to take max dose paracetamol and not to be a martyr to the pain.
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