Update on Tofacitinib

[Hessie5]

Happy Friday all.

Thought I would give it a while with this bioligic they have put me on to feedback. It's been around 3 weeks now. Here goes:

- prior to taking this new biologic I was off medication for about 8 weeks. This was due to Entracept taking my white blood cell count too low around 0.7, had my consultant into a bit of a tizzy. Had to stop immediately.

- so now start on Xeljanz Tofacitinib 5th September, I admit I was anxious, but having suffered a major flare in my right shoulder 2 days prior, I was in such pain I vowed to start, with the encouragement of some of the lovely people on here too.

- Day 1 of ingesting - I awoke next morning with all my fingers swollen and the pain 😩 just could not bend them. I was confused as never ever had issues with my hands only my right foot! I realised this ugly disease was spreading as had a lump too and two fingers distinctly re shaped (I hope this is not permanent)😣

- Phoned consultant somewhat fed up as didn't know if this was the medication or just my RA having been off the meds for so long! That's the part that conflicts, not knowing. ESR raised to 60 😬the Rheumy Assistant declared, she said it's the RA and not the medication, all just a coincidence. The biologic tablet did not cause the joint issues in my hands she felt. She increased my dose to two tablets a day. Also, said to exercise my fingers. For pain she offered a steroid injection l declined opting for paracetamol so not to disguise the pain.

- when I took two tablets my body didn't like it one bit. I made the call to go back down to the one tablet (she is not going to like that), but I did find it a struggle.

- To date, its been up and down. The main pain point is awaking everyday with sore plumped fingers, that I just cannot bend. They get slightly better as the day wears on. Need a scan for sure, as don't know if rampant inflammation here. Bought compression gloves.

My next steps - see the surgeon re my foot tendonitis end of October (can't walk down stairs without pain), this has been ongoing, think the tendons are destroyed from the RA, can no longer tip toe. Revisit the rheumatologist November. Learn to live with my pain, on bad days take a paracetamol, exercise when I can, eat well but don't get too hung up on the odd treat, stay positive as much as possible.

There have been goods days in between when I smile and am truly grateful and hopefull things shall get better.

Have a wonderful weekend, relax and look after you 🧘‍♀️

[popsmith1874]

Well you are going through the mill at the moment Hessie,hopefully things improve through time but that's no consolation as your struggling at the moment, I think you done the right thing in not having the steroid injection as it just masks the problem if you can bear with it for a wee while to see if things improve, take care xxx

[Hessie5 in reply to popsmith1874]

Thank you for your kind feedback. It's going to be just fine, going to hold out until next appointment, unless my rheumy says otherwise. All the best. xxx

[Hidden]

I really hope its the gap in meds that have caused this and that the tofacitinib starts working effectively asap.

[Hessie5 in reply to Hidden]

Thank you Norisa, take care. x

[Hidden]

Really sorry Hessie hope it is gap in medication: I had both shoulders flare after being off MTX for 5 weeks before starting benepali though I do notice joints ache more for couple of days after injection x not same as what you’re on but starting to improve, hope you’re the same and soon ! 😀

[Hessie5 in reply to Hidden]

Definitely get more aches, I take my meds at night to find I wake up to swollen hands! Very frustrating. So glad you are on the up. 😊