Tofacitinib

[ArcherDee]

So I’m on week ten of this drug and I have to say I feel worse than before. My bloods remain the same (which were never indicative of what’s going on with my body anyway).

I’ve started having headaches about week six and over the last three weeks the fatigue is terrible. I’ve been spending days on end in bed because I have zero energy and just feel crap generally. I’m feeling very low as I had such high hopes with this drug. I’ve tried to contact my rheumy but he’s impossible to get hold of. He’s got two extra clinics now so between that and his regular holidays I’ve given up. I think I’m going to have to try again today though as I feel like I’ve had an infusion of concrete!

I’ve been to my gp and for the headaches he just said take paracetamol! Like I hadn’t already been doing that! For the fatigue he suggested maca tablets and omega 3. I’ve been taking both for a month now and no difference.

Boo! Sorry to be a misery

[Hidden]

Really sorry to hear this hasn't lived up to your hopes, as yet anyway. Are you due a review with the Rheum nurse to see how you are doing?

[Amy65]

Could u ring ur specialist NURSE for advice .if u leave them a message they get back to u and can lasion with it rheaumatoid. Hope u get sorted is it infusions ur on amy

[ArcherDee in reply to Amy65]

Hi, it’s the tablets. THey are new to the UK this year. I had so much hope when I got the funding approval to start taking them

[ArcherDee]

Hi, just an update.. I spoke to rheum nurse on he helpline. She’s going to speak to the rheumatologists secretary to leave a note on his desk and either he or the nurse would call me back.

In the meantime she’s told me to stop taking the tablets

[sjhewitt42 in reply to ArcherDee]

Hope you manage to get sorted and they call you back. xxx

[Amy65]

That's good u got rheaumy nurse .hope u get sorted .I had to ring rheaumy nurse when I was on secukinumab biologic was making me violently sick had to come of it .been on 7 biologics over 14 years no more left to try .that's why I was asking was it's tablets as they had mentioned trying them c at next review take care Amy

[ArcherDee]

God that must be frustrating. I’ve tried hydroxy which made me be in agony!

Then sulfa with mtx added later in. Sulfa was making my red cells too big so they took me off that in April and started the biologic in June. Everything takes so so long, I’m sure it’ll be months before I get to try the next biologic 😢. Meanwhile trying to hold down a job and exist!

[Amy65 in reply to ArcherDee]

I know their never in a hurry to start more drugs u would think they were paying for it them selfs lol .hope u get sorted soon amy