Combinations : Just been researching as you do. Still... - NRAS

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Just been researching as you do. Still trying to get to grips with it all but cutting the story short I was diagnosed last year and put on 15mg Mtx. Initially orally then subcut. I never really had sickness but ended up having horrendous migraines which sent me to my bed for three days at a time. I was then taken off Mtx and put on sulfazalazine which I am tolerating well but my joints all hurt so bad. No swelling just pain. My last bloods showed markers were low but my original tests had my CCP at >154 so fairly high positive. Now my thinking is the sulfa isn't hitting it and I reckon another drug will be added in. Thoughts on giving mtx a try again maybe at a lower dose? Or would it be more sensible to try another instead? I keep reading Mtx is THE drug as a main starting point and now I'm worrying I'm risking damage by not tolerating it and I should try again. Obviously the rheumy will make the decision it's just I like to think things through and interested in what combinations you are on. My next appointment is the 10th Feb so not too long to wait. I might sleep tonight now I've rambled all that out 😂

11 Replies

Just to add when I was on Mtx I had no joint pain.

I'm on MTX and hydroxychloroquine. I started out on 15mg. tablets and now take the 15mg. as an injection. I have a few side effects from the MTX but nothing horrible. I have been on this combo for 2 years and it is working really well for me.

You could try the injection version of mtx i have been told people suffer less with the injection. I don't know as i have never had and side effects from this drug.xxxx

Amhoarten in reply to sylvi

Thanks for your reply. I tried the injections but got bad migraines which I had never had before or have had since i stopped the Mtx. Just wondered it it was maybe worth trying a lower dose. I will see what they recommend next month.

Your rheumatologist should give you options as there are several DMARDs available. They may suggest hydroxychloroquine or leflunomide rather than MTX again. MTX is regarded as the gold standard for treatment but many people don't tolerate it and take other drugs which work for them.

Hi there are various Dmards equally as good as MTX.. I didn't tolerate MTX very well at all, so I'm on Sulphasalazine and Hydroxychloroxine, which is better for me.. I was only diagnosed in 2014 so still learning .

Amhoarten in reply to Kate23

Thanks for the reply. How many tablets do you take with hydroxy? Are you pretty much pain free? I want to get to the point where I don't have every joint in my body hurting.

Kate23 in reply to Amhoarten

Hi I take Hydroxychloroxine 2 tabs a day, and 4 Sulphasalazine per day...I am pretty good pain wise now, but I feel quite fatigued, which is quite frustrating as I was one of those irritating women who was always on the go! Now I feel like my get up and go has got up and gone!.

If I overdo things , then my body lets me know big time and puts me in a flare which is very debilitating. I would say I am 80% pain free now and my inflammation markers have dropped to 5.. Which is a great improvement from 2 years ago.

I had my 2nd Eye test today and there have been no significant changes which is v.good as Hydroxy can affect the eyes...good luck, keep as active as you can I swim, walk 2 dogs and generally do pretty much what I always did..but 2years ago when it all started I thought my life was basically over...Kate x

hi, I switched from mtx to leflunomide after many years. Now take lef and hydroxy. Never been pain free, but no nasty side effects. So hope you find the right combination soon.

Sadly in my case i did not tolerate MTX or Sulfasalazine sulfate gave me rash that burnt my skin and has lasted four months so far. I have been lucky to have been offered biologics only used for three weeks so I dont know result yet. But I am really struggling to get off the only drug I was left with before biologic which is Prednisolone got down to 5mg this week but now I have pain back. Once I get off this aweful Prednisolone I am not taking it again.

I was diagnosed jan 2016

I had migraine on mtx too, now on leflunomide which is better for me, we are all different it seems.

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