Benepali with less MTX?

[roseyx]

hi

I am about to start Benepali ( when it turns up ) and my Rheumatologist wants me to continue with 20mg MTX as well which I have been on for over a year now without significant improvement.The pain in my hands wrists and feet ankles has been more or less constant.

I can't know if it would have got much worse without the MTX during the past year but it's certainly not worked for me as it does for some.

I understand that keeping on 2 therapies is the current medical thinking but would be a lot happier if I could reduce the MTX now ..maybe down to 15 as I was on that dose for a while and side effects were less.

It would be really helpful if anyone has any thoughts or experience on this as I am going to write to my rheumatologist to ask her about it.

[Deniseelk]

For me I took Hydroxychloroquine since diagnosis ( my request as I was concerned to start Methotrexate) , then took Methotrexate ( in addition) for 6 months but couldn’t tolerate the side effects and my Rheumatologist felt it was not holding my RA ( My wrist was very quickly damaged and he was concerned how aggressive my RA was) so started Benepali and stopped Methotrexate. No side effects with Benepali. I suggest you talk to your Rheumatologist, you have choices but use their wealth of knowledge to guide you. Ask questions, let them know your concerns. It should be a joint decision. Best of luck.

[roseyx in reply to Deniseelk]

Thanks Deniseelk,

It's good to hear you have no Benepali side effects and are managing on mono therapy. I like the idea of making joint decisions and yes they do have a wealth of knowledge so maybe it's also good to let go a bit and be guided . I probably try too hard to hang on to a few shreds of independence in all this.

I hope the Bengali is improving things for you.

[Matilda_1922]

Hi Rosie

I’ve been on Benepali since last November 25mg initially (half dose) and went up 50mg end of January. I continue on methotrexate 20mg Which makes me feel unwell for a couple of days.

Had an appointment in April hoping to reduce methotrexate but told I will need to continue for a couple of years before considering reduction of methotrexate. So I came away from this appointment very deflated.

Methotrexate worked well for me initially but started getting bad nausea and pain after a few months.

So you may need to be insistent when attending your next appointment.

The Benepali is delivered to your home but from my experience you need to call them before you run out and arrange your next supply.

[roseyx]

Hi, thanks Matilda,

The thought of a couple of years waiting for a consideration would make me deflated too.

I don't think I can be too insistent but I will give it a go and put down what I am thinking , then see what rheumatologist says.

Since writing this post I have read something helixhelix said on another post about how MTX stops your body building up antibodies to the biologic which I hadn't thought about and no one has mentioned to me. It sounds quite a compelling reason to keep on with it. (more reading to do... )

[Scottishlad]

Before I started Cimzia my MTX was reduced from 25 to 15 partly to help me reach a qualifying DAS score. My consultant had hoped that we could reduce it to 10 but this did not prove to be possible. I carry on at 20.

If Benepali works well I see no reason why you can't cut your MTX.

[roseyx in reply to Scottishlad]

Thanks for your reply Scottishlad