Tofocitiib - how long??: Hi everyone. I started... - NRAS

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Tofocitiib - how long??

ArcherDee
ArcherDee

Hi everyone.

I started tofacitinib 8 weeks ago and so far not seeing much difference. I've searched for the drug on this forum and found lots of info, however; I have a few questions that don't seem to be covered in previous posts.

Can anyone share their experience of how long it took to take effect?

I've been having terrible headaches the last week or so (they started week 7 of being on the drug). Headaches for me are very rare so naturally I'm worried. I've had my eyes tested at the weekend and my lenses have changed by 0.5 for reading which could be causing them so I'm waiting until I get my new glasses to see if they continue before ringing my rheumy as he is so hard to get hold of. GP just told me to continue taking naproxen and take paracetemol.. :-(

Has anyone else experienced headaches? Its right at the top of my head and the bad days I am very light sensitive.

I've been holding out so long for this wonder drug and finding myself bitterly disappointed so far. I'm really hoping I might see a difference soon but in the meantime, I'm very down in the dumps and having a pity party about how much pain and fatigue I'm experiencing. The pain for the most part, I can still function on with painkillers but the fatigue is a killer and I'm scared because its getting worse. I was on sulfa and still on 10mg of MTX

Sorry for the long post, I'm feeling very sorry for myself. x

It's impossible to get hold of my rheumy

5 Replies
oldestnewest

You have more patience than me....I'm only on week 4 of my drug and I want to feel it work!

Headaches are my least favorite as no way of blocking it out. Hope just temporary but do call your rheumy team.

That's not right. Headaches should not last this long and, on top of everything else, make life miserable. Time to track down your rheumy I think. Hugs

J

Hi Archer - not many people on this biologic, just wondered how you are getting on, as I don’t feel any different barring more pain if anything. Is it helping you ?

ArcherDee
ArcherDee in reply to Hessie5

Hi, I’ve actually been taken off this drug now. It was making me worse in terms of fatigue and I had terrible headaches and a rash. I stuck it out for 12 weeks then rang the nurse who told me to stop taking it. I’ve just started humira x

Hessie5
Hessie5 in reply to ArcherDee

Thank you, Archer! Hope you're feeling better now.

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