Advice!

Hi all hope everyone is well (as well as can be lol) just a quick question, have been on mx 15mg & 5g folic acid once a week for about six months, at first noticed a great improvement but now it's not so good & I'm even noticing pain in new joints, was wondering could my gp up mtx or do I have to go through rheumy (who cancelled my appointment last week till June!!) not sure what my options are. would appreciate any feedback xx gentle hugs xxx

8 Replies

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  • It's the rheumy who makes decisions on your RA meds. Do you have a rheumy nurse you can call? Or the number of the consultant's secretary so you can leave a message? If not then ask your GP to push on your behalf as they have other ways of communicating with the rheumy. But you do need the rheumy's input as they may feel that for your specific circumstances it's better to add in another med rather than increasing the MTX for example.

    This is very much the pattern I had, in that a new med would work wonders for a while and then the aches started again, and the rheumy would tweak meds/add things/swap things. Long story, but I'm now pretty stable on 3 DMARDS plus fairly regular NSAID use.

  • Thanks for your reply, it's not easy getting hold of rheumy nurse but will keep trying xxx

  • Always talk any changes through with your Rheumy or Rheumy nurse, MTX has to be carefully managed, whether increasing or decreasing, this really applies for any other med you're taking for RD. He's best placed to know if your MTX is working at the dose you're on or not. I've had problematic feet for a while now, disease activity, & recently had an increase in my MTX but this had to be done by my Rheumy so I know sort of know how you're feeling. It may not be the MTX, it could be that your NSAID dose needs altering or even needs changing, again this has happened to me so it's not necessarily the MTX dose you see. But your GP can't make that decision, it's a specialist med so he won't be able to make that call. It's possible he could take a look at your bloods & see if you would benefit from a change in your NSAID or add in pain relief for the interim but I would think he wouldn't want to do this without advice from your Rheumy.

    Were you given an explanation for the move in your appointment, June seems an awfully long way from March?! I would contact your team & explain why you need to have that brought forward.

  • If you haven't done so already, I'd suggest trying to get that cancelled appointment back - or one much sooner than June, anyway - on the grounds that things have changed.

    When we're toddling along okay on meds, appointments are arguably not as important as when a drug has stopped working or is becoming much less effective. It's a whole different ball game now so your rheumy needs to know that.

    The rheumy department might need a little bit of help from you to realise how important it is to see you sooner rather than later. The only strategies I've developed are a) phoning up and going on and on and on ...... or b) phoning up repeatedly.

  • Thanks for your replays have phoned nurse & left a message,nomoreheels nurse was sick last week that's why it was cancelled xx

  • I'd push for an earlier appointment, particularly as things aren't as they should be. To my mind that she was ill is no reason to delay your appointment 3 months, they should be doing all they can to reappoint asap.

  • That's replys!!! Doh!!!!! Xx

  • Your DMARDS are prescribed by a specialist, so you will need to go see your Rheumy for a dosage change.

    I would call the Rheumy office and leave a message. Tell them "my MTX was working, now its stopped working and I am in a lot of pain, can I come in asap to see if I can possible get my MTX increased, I can not wait until my June appt" this way the doctor knows exactly why you need an asap appointment and that it is urgent.

    Good Luck.

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