Help - Methotrexate no longer working!

[dodgeorge]

Hi everyone,
Apologies in advance if this has been brought up before - I'm a newbie!
My story - diagnosed with psoriatic arthiritis in 1998, went on 7.5mg of MTX, after 6 months worked perfectly. And I mean perfectly - you wouldn't think I had anything wrong with me. Fast forward to getting married 3 years later, and 2 years after that conceiving a child (well, my wife, not me!)

Was on Ciclosporin (horrible drug - hated it) during the conception, then went back onto MTX after, but at a higher dose. this time round it didn't work so well. Eventually I have ended up on 20mg of MTX every week. I haven't tolerated it well since then, until recently when I don't seem to tolerate it at all. I've been saying to my rheumatologist that I've been feeling really unwell with it, but he just seems to say the same thing - try anti sickness, try spreading the dose. This has been going on for 3 years and now I'm at the end of my tether! I've tried everything he suggested and got metaclopramide from my GP, but lately nothing works. I have terrible nausea, to the point of being sick almost on a weekly basis.

My question is what alternatives are there, and how should I approach my consultant about this, and make him listen?

I don't think I can take much more. It is seriously getting me down!

Help! Please tell me I'm not alone?!

Thanks in advance

dodgeorge.

[IHPA]

Don't leave his/her office until you have received what you want - trial on a different drug.  You've been patient, you've done what they said, and they were right to get you to try alternatives.  I guess you haven't gone down the route of Mtx injections, which might be their next alternative.  That seems to work well for people who can't tolerate Mtx orally.  I gather you are taking a good dose of folic acid to alleviate the symptoms?  The injections would be worth trying, based on how other people have felt.  Give it a certain period of time, then go back if that doesn't work.  But don't leave their office until you have what you want - you are a paying customer, after all!

All the best
Lesley

[david_8]

hi, Dodgeorge & welcome

? how are your liver/bloods tests raised  or always showing normal

? i take it your gp is not very understanding/helpful

? have any before and recent mri/scans been done to see how well the mtx is working
? have you asked for a second/referral confirmed diagnoses from another rheumy

just tell him politely but assertive
that your nausea/fatigue etc is getting you down and out ways the fors , for you
and what else can he/she suggest ie mtx/injections or other dmrds etc

you can even print this of and shove it under his/her nose

[LondonKate]

Welcome, Dodgeorge to PHO! It sounds to me is if you have been very patient indeed.  I assume you are in the UK? The next step is to move to a biological, which are qualified for since you have tried  2 previous DMARDS....

So suggest this to the rheumatologist, if he doesn't follow this up, then asked your GP for a second opinion from another consultant, perhaps in another hospital with a larger rheumatology department. That does depend on where you live and where you can usefully get to without hassle

Here's some information for you from ARC who have a very comprehensive list of leaflets on the different drug and conditions.

Etanercept and Infliximab are the two biologicals recommended by NICE

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Hope this helps... you're not at the end of the road yet, you just need to give your consultant a prod in the backside and if this doesn't work move on!
 

[riaY]

Hiya and welcome

[dodgeorge]

Thanks for your advice folks.
Yes I'm in the UK, and NHS, the Dr did mention MTX injections then went on about the cost to the NHS!! Like that's the first thing I'm thinking about when I've joints in agony...
But, patient me, I just let it go. At that point they were still tweaking away at the doses between MTX and Ciclosporin, so probably just wanted to exhaust all the options before going down the road of injections.

My bloods have been fine and I'm taking folic acid too, so doing everything they say. GP never wants to change anything apart from anti sickness and pain killers, probably for fear of stepping on the rheumy clinics toes.

Added to the complications my wife is now talking again about having another child - so I'll probably be off MTX again!! Aaaargh! But my wee daughter does need a playmate! It's rubbish though, that you have to think so seriously about the consequences before even thinking about such a basic thing as having a child. So only upside this time is that the MTX isn't really that effective at the moment. But it is scary to come off it altogether, I might find it was working better than I thought.

Oh well, I must soldier on.

Cheers again for those that took the time to respond. and thanks for the links LondonKate.

dodgeorge.

[Talis]

Hi dodgeorge and welcome from me too

I agree with the above, you need to go back and discuss treatments again. especially as you are thinking of trying for another baby..this is maybe the excuse you need to get your foot back in the door so to speak..and dont take your foot out of that door til you got the help you need!

And a doc that quoted drug prices isnt one that I would be going to see to be honest, its inappropriate for him to be doing this in my opinion. Docs are regulated to what they can prescribe by NICE guidelines, have a look here:

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