Update from me; Refused methotrexate

toady

I do feel for you crabby having been in the same position, and I certainly had the denial too as I was absolutely determined I was going to do well on just hydroxychloroquine, and I did for a while, once that wore off it was like hitting a brick wall because I just could not see myself taking the methotrexate. In my case that was a nausea phobia and also quite a bit of I just couldn't mentally cross over from the mildly affected group and 're-label' myself as properly ill - having already spent a long time getting over (& very nearly getting on top of, I thought) another condition.

I did what you are doing and asked around for people's advice, experience, opinions but all it blurred into in the end was 'blah blah blah have to take the mtx blah blah no way of knowing what side effects you will get however many people's experiences you hear about'. In other words the basic choice you are facing, of having to 'jump' and take the mtx or stay where I was becoming more inflammatory - clearly not an option. But it still felt like an untakeable decision.

In the end I was able to nerve myself up to try the injectable version which was fortunate for me that I found a rheumy who let me skip trying the tablets, although that would not be your choice I imagine as I believe it's partly the blood tests you don't like the idea of. To this day I don't know what I would have done if tablets were the only option, because people telling me I would just 'have' to take them didn't go any way toward making me feel I could. However on the side-effects front I can say I haven't had any problems, no infections (I'm not working so I'm able to avoid contact with lots of people but I do go out amongst people so I'm not totally isolating myself or anything).

If I could go back and start mtx sooner I would do now but only because no-one told me injecting was an option. For all I know I would have tolerated the tablets anyway, and I would have spared myself a horrible couple of years getting iller & iller, but from my experience, someone saying that to me would not have helped at the time (probably the opposite) so I do feel enormously for your situation and I'm sorry no-one can tell you what you want to hear and offer you another way, as that is all I wanted. I do hope you can come to a decision that lets you work around your fears. xx

stickywicket

crabby85 wrote:

DreamDaisy, Its weird, it's not like i have never taken medication - from the age of 17 i took every antidepressant and anti-anxiety tablet under the sun- & endured the side effects. I've been off them for a year but for many years every time i tried to come off i couldnt. Somehow this medication & treatment seems worse. Maybe it is my anxiety starting up again, i dont know. Also being told i have arthritis came as more of a shock to me than mental health problems such as depression and anxiety. I still feel a bit of denial i guess. Its silly i know.

It's not silly. It's a perfectly natural response to being told you have an incurable disease, crabby85. From all that you've written I still think it would be a good thing to give our Helpline people a call and give yourself the opportunity to explore your - possibly complex - feelings about the whole thing with someone who will give you as much time as you need. Sometimes a sympathetic ear enables us to work out our own feelings about things.

Boomer13

I think sticky is right crabby. Even just airing out your feelings will help with your decision.

You may find you tolerate mtx just fine. Who knows, you may be one of the lucky ones for whom it works brilliantly.

I was terribly apprehensive about starting it and I did have a lot of side-effects but my liver has tolerated it and though it hasn't controlled my PsA like the doc and I hoped, I wouldn't go back to my pre-mtx days for anything. Those were terrible days. I've taken it for 1year and 3months and just switched to injectable in January. I'm at the max dose now.

Best of luck with your decision.