Why am I more sick on MTX then when I first started? does it build up in your system?

[turtlemom2]

I ran out of the MTX as my Rhemy left for vaca and I cannot get in to see her until the end of July. I was increasingly worried about it as for some reason I was getting more achy and it was so severe that it put me to bed several times. Ever been so achy you knew something was not right and it flat out scared you? That was me. So, I ran out of MTX and delayed requesting it and did not take it on Saturday (my normal time) and I am tired but feel much better in general. Can someone tell me why the longer I take MTX the worse I get? Why is this? Does the drug build in your system? I honestly feel so badly on it that I would rather use my cain the use it. I have no tollerance for the other drugs that I have tried. Anyone know if CBD oil helps? I am terrified this will put me in a wheelchair as I have it in my feet now. (it started in my hands). Also, anyone know if going to an ortho would help diagnose? as my rhemy leaves a lot to be desired.

[Need2knowN]

I didn’t get on with it, I gave it such a good go too, after 12 weeks of hell and side effects, I didn’t feel any better than off it. Then I developed blisters. That’s when I knew it had to go.

If your Rheummy is away, can your nurse give you some pred to tide you over?

[JFlay in reply to Need2knowN]

I stuck it out for 20 weeks then just couldn't stand it any longer. Will see rheumy end of July re what's next. Which DMARD did you change to?

[Need2knowN in reply to JFlay]

I’m on Leflunomide now, it took a while to kick in as they started me on 10mg but once I got the full dose of 20mg after a few weeks of that & amitriptyline, I started few much better.

[JFlay in reply to Need2knowN]

That's good 👍 I wish there was one drug that works and suits everyone! so much trial and error 😒

[oldtimer]

Have a look at the treatments page on the NRAS site.

There are other treatments that you could be on if you don't get on with methotrexate. Some people are fine on it and well controlled, others it doesn't suit.

[turtlemom2 in reply to oldtimer]

Thank you I will. However does the MTX build up in your system? is there a reason why it is getting worse not better? I tollerated it ok at first.

[oldtimer in reply to turtlemom2]

Yes it builds up and each dose then tops it up. That's why you have to wait so long to see if it's working.

[turtlemom2 in reply to oldtimer]

that makes sense why I am getting more sick but that is also scary.

[oldtimer in reply to turtlemom2]

It doesn't go on building up but reaches a steady state where what is broken down is replaced by the weekly dose. Does that sound better?

[turtlemom2 in reply to oldtimer]

Thank you. Yes it sounds better but still does not take away the pain. I assume it just does not work for me the more I take. I figured it would be at its max level on month three.

[Hidden]

I'm on MTX and Leflunomide, have been for years.