Consultant 25 Jan... what to do in the meantime?

[Brushwork]

I can continue to take low dose Mtx. , but since missing one and therefore realising fully the horrid way Mtx seems to steal my mojo, I am not sure I want to do even that. I seriously slide into depression on Mtx for some reason. I might try it for a few weeks but, well we shall see.

The only route forward for me is biologics again, but having suffered problems with both Amgevita and Benepali the field is narrowing. Both of these though, work in a similar fashion, but both caused severe hair loss and Benepali also caused an allergic reaction, and actually Amgevita didn't work. What next?

I am having an internal debate regarding pain relief in the meantime and possibly calling my GP for advice. Perhaps I should, it wouldn't hurt.

[Marionfromhappydays]

I am not any kind of expert but I am starting benepali (probably january) its my first go at biologics and my rhemy nurse said if I don't get on with it not to worry as there are many others to try.

Obviously we are different people etc but I was lead to believe there are more than 2 biologics. Ask whats the worst they can say?

Sorry you are feeling crap on mtx x

[Mmrr]

Difficult .....but don't loose faith with biologics...I've been on benepali, baricitinib, tocilizumab none of which helped, or the side effects were too great. I now take toficitinib which seems to be helping in combination with leflunomide. Leflunomide has been far superior for me than MTX.

I'm managing a steroid taper too. Hang in there and take pain relief if you need it.

[Lolabridge]

I’m on my second biologic and it’s working well for me. Don’t lose hope as there are others available and more under development. You just haven’t found the right one for you yet. Let it be the next one! 🤞🏻

[Monkeysmum]

I understand your internal debate, I’ve decided I have a love hate relationship with MTX. A recent reduction in dosage showed me just how much it was responsible for my fatigue and zombie like feeling, but the pain and stiffness in my knees was just too much and I’ve had to go back up to 20mg. I know I need to push with my Rheumy team to try something different from Benepali (my first biologic) but with how difficult it is to get to see anyone currently and the fact that I feel a little battle weary at the minute I have decided now is not the time. I am not dealing with the depression element that you are though so to me your need is more pressing. I definitely think the call to the GP is worthwhile also, and should hopefully be more straightforward, it would at least be a step forward? Hope you get some relief soon. Xx

[oldtimer]

Have a look at the treatment pages on the NRAS website. It will give you information about the many avenues to explore for your future treatment. And you can work out the good and bad about each treatment for you specifically (e.g. infusions/injections/tablets, side effects etc).For me personally methotrexate side effects were so terrible that I could not continue, but many people find that they don't have many problems and those get less with time.

But finding the best treatment for each individual takes time. Unfortunately we're not yet at the point where it's possible to predict from testing who would respond to which treatment - but we're getting there.