Flare up again: Hi all ive been taking mtx now since... - NRAS

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Flare up again

natellie36 profile image
9 Replies

Hi all ive been taking mtx now since last august with dose starting at 7.5 now on 20mg but still getting flare ups,sunday my left wrist started to hurt so i knew what what was coming yesterday hot swollen in pain soooo much so the tramadol was much needed,now its my left index finger and shoulder when will the mtx start to work?

Also both wrists/hands are so weak getting to the stage where i cant even lift the kettle,i have a physio appt this afternoon to get somekind of splints for my wrists just hope they can help as need support for both of them.x

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natellie36
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helixhelix profile image
helixhelix

Hi there, sorry you're having a bad time right now. I think you also need to phone your rheumy department as it also sounds as if you need your meds reviewed. It's now 6 months since you started MTX, so it looks as if by itself it's not working enough and you should discuss other drugs with your rheumy team. It's not nice to think about having to take yet more drugs, but if you're still flaring then you risk permanent damage. Polly

natellie36 profile image
natellie36

Hi and thanks for your reply,this is what i thought not sure what other meds are available to me as only diagnosed last august but will take your advice and will call my rheumy this morning,i know from my das score from 2 weeks ago showed the disease was still very much active just getting me down as i have already lost my job and its half term and cant do nothing with the kids so they are frustrated which makes me upset. x

Poor you and it's so hard with children too. Things will improve as Polly says when the drugs are the right ones for you. Rheumatology is very slow (and beleagured) in many places and the only way to improve things is to pester your GP and your rheumatology team to get yourself seen and helped more. It is now thought that a combination of therapies (drugs) works more effectively for early RA and some people are even started on tripple or double therapies but unfortunately things can move very slowly still and not yet in line with NICE guidelines. You probably need another DMARD or perhaps two adding in on top of the MTX. If found it only worked properly for me when Hydroxichloraquine was introduced last April and even then I had to be switched to injectable Methotrexate to get my inflammatory markers down. This meant it was a year from diagnosis until I had my RA effectively modified and that's pretty much how it is for many of us I think - in fact I'm lucky. But as you have a job and kids at home etc then you really do need to push your team extra hard to get onto new drugs I would say. Tilda xx

PS suggest you do your research on this site and other places into the various drugs available so you can have a good discussion with your rheumy about them

natellie36 profile image
natellie36

Thanks tilda for your reply,it is frustrating as i feel as if the rheumy is just tring to up my MTX instead of trying new ones but i just go with the flow so to speak,trying to call them but line is engaged so will keep trying.

I lost my job last week i worked as a podiatrist so i do know a bit of background info about RA but not that much as my rheumy,they the nhs are now trying redeployment as i used my hands all day everyday doing my job and couldnt do it anymore have been off work since last may so fed up big time,never mind just hope 2013 is better than 2012.x

Josie2 profile image
Josie2

Im now on my 3rd different dmard so i know how you are feeling. Do let your rheumy team know as there are lots of other meds out there.

natellie36 profile image
natellie36

Thanks josie have not been able to speak with a rheumy nurse today will try tomorrow,just worried as this is ongoing and its not working so i'm worried about the ra affecting my joints even more and only 36.x

Have you spoken to your GP about this yet? They may be able to contact your consultant by email for you and help things along quicker. That's a real shame about you losing your job. If things were better controlled then you probably wouldn't have had those problems so I think you should talk this through with your GP urgently. Also its okay to go with the flow for many areas of life but with rheumatology I have found its much better to be well informed about drugs and disease and to be proactive because generally its a very beleaguered specialism and those who keep quiet are easily forgotten about. Tilda x

natellie36 profile image
natellie36

Thanks tilda,have booked an appt for tomorrow morning with gp as trying to get through to the rheumy nurse or consultant is a nightmare,thanks for the advice.x

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