Experiences with stopping Benepali and Methotrexate?

[MrsSBJ]

I’ve been on Etanercept and Metoject 20 weekly injections for 9months which has mostly-but not completely controlled my sero-negative RD. My white cell count always been low but now neutrophils dropped to 1, so have been told to stop both drugs for at least 2weeks and I’m waiting for results of repeat bloods. I’m only 5 days without the Benepali and it seems like I’m getting more pain. I wondered if anyone else had noticed this effect so quickly? Thank you. I’m finding it hard not to feel fed up as it seems to have taken so long to get to a steady place with the treatment.

[helixhelix]

I had to stop both recently for 3 weeks because of gastroenteritis. And yes I feel it! Couldn’t wait to start back on the drugs, and it is taking a bit of while to get stable again.

You will get back there! Either with these drugs or others.

[Mmrr]

I noticed stopping my toficitinib after 5 days, but within a few days felt the benefit again. Hopefully your bloods will have improved and you can restart meds soon.

[Hollyhock123]

Hi, yes I had to stop my Benepali and my tablet methotrexate 2 weeks before my operation (3yrs ago), and for a while after. I noticed a difference within the week, and thankfully my operation went ahead as planned so worth it! Was so pleased to eventually get back on them. Not sure how long it was to work again, as for me I was also recovering from op, but I did have to have a steroid injection as a relief at some point.

[jf211]

If you only inject weekly then 5 days is before you would normally inject so it probably isn’t that - maybe just what your disease is doing right now

[MrsSBJ in reply to jf211]

Thank you for replying. I maybe didn’t explain properly. I’m now 12 days since the last (usually weekly) dose as I’ve been told to stop it till bloods recover. It seemed to be showing up in symptoms very quickly. I do know what you mean though. I find the day to day ups and downs of the disease hard to fathom or explain and indeed deal with.