On adalimumab, off methotrexate

[Sunshinereturns]

Hi everyone, I’ve been on top dose methotrexate for a few years. Adalimumab was added into the mix in March and I achieved remission. It felt great. Bloods showed immune system had dropped badly in Nov (wbc and neutrophils, this happened before with sulfasalazine) and was told to cut methotrexate. Felt very scary to do so but complied. Blood results have steadily improved since and I had no flare up, felt very lucky. Until yesterday.

Had tell-take stiffness in my fingers two nights ago and by this morning can barely move my right fingers, hand and wrist. So disappointed. Does anyone have any experience of this situation? Will I likely go back on methotrexate on a lower dose? This is the second instance of my body reacting badly to medication (blood levels) while I’ve been feeling fine. It’s frustrating to find what feels like a winning formula and it then be removed due to bloods. Thanks

[HeadInASpin]

Yes I have had meds removed/added due to blood results and understand how frustrating this can be. It’s important to remember why we have the blood tests - we don’t want to solve one problem by creating another one, so monitoring is vital. The fact that you have achieved remission once is amazing and I can understand how scary it must be to have that taken away. You’ve proved it can be done but your team now have to find a way to do it again but safely. Good luck

[Sunshinereturns in reply to HeadInASpin]

Thank you for such a kind and caring reply. Feeling more positive!

[oldtimer2]

I had a few flares on adalimumab, controlled by a short course of prednisolone. Gradually though my symptoms and signs started back a good week before I was due the next injection. I've transferred to etanercept weekly. One flare in six months so far. I'm happy with that (and it seems to tackle the back pain as well which they said it wouldn't.)

It's always disaapointing when you think "Cracked it" and then you have a flare, but on balance I'm so much better that I'm happy to accept it.

[Sunshinereturns in reply to oldtimer2]

Thank you so much for this input - it’s always good to remember there are lots more options. Appreciated.

[Ankspon]

Sorry to read about your experience with side effects. I’ve been on biologics, 4 different ones over the last 20 years. The best for me was Enbrel which worked for 17 years. During those 17 years I always felt it worked 70-80%. I still had some flare ups but I could manage them. At times Methotrexate was added but if the dose went above 7.5mg for me I ended up with infections. Some people tolerate Methotrexate better than others but recently with Ro-Actemra it caused my neutrophils to drop to 0.8 and I also had low platelets. We are all such unique beings we have to see what works for us. I don’t know if others would agree but getting to know how our own body works and responds is helpful. Over the years I’ve learnt to be a better listener to myself. Sometimes our gut feelings about what’s going on are helpful to share with our rheumatologists.

[Sunshinereturns in reply to Ankspon]

This is hugely helpful, thank you. I agree with all you say and it’s given me more to think about too. We need to learn what works for us.

[tyncwmmarchhywel]

any one have any bad comments to say on Adalinmab, thank you.