Xeljanz: Hello, I am Bas from the Netherlands. I have... - NRAS

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Xeljanz

bassiefromholland profile image

Hello, I am Bas from the Netherlands. I have been in the most biologicals. Some worked Some didn’t. Now I am on Xeljanz (toficitinib)

Someone on it? What are your experiences.

😘Bas

Ps i am also on prednisolon, sulfasalazine, plaquenil for my RA

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bassiefromholland
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8 Replies

Hi bas, sorry can’t help as not on it, hopefully someone who is will answer soon. In meantime if you stick both names in ‘search’ at top there were some really positive ones there. Hope it works for you, all the best x

Hi Basie, I was on tofacitanib recently and unfortunately it didn’t really do anything for me! I did have some slight improvement when started but never really worked, but! that’s not to say it won’t help you! Good luck,

bassiefromholland profile image
bassiefromholland in reply to

Thnx AngelMar. I am on iT for 5 weeks now. Unfortenally without results. My inflammation got worse instead. Next week appointment with my rheumy. Think have to stop

oldtimer profile image
oldtimer

please put tofacitinib in the search box. There are several replies to previous queries about this. It has only recently been introduced to the UK, but my sister (who lives in France) is on it as a post-marketing trial and it has been very successful for her. Her only problem has been a slight rise in her cholesterol level and she now has to take a statin as well. But she is almost pain-free except for a recent development of hip osteoarthritis (she has had two replacement knee joints and some hand joints also in the past.

JamieRN profile image
JamieRN

Plaquenil is now black boxed in the USA. I took it for 2 yrs for severe RA at age 48. You MUST see a ophthalmologist who specializes in RA pts on plaquenil every 6 months due to the danger of losing your sight. I had to stop taking it due to it ruined my eyes. Do Not take it.

kkminton profile image
kkminton in reply to JamieRN

What does black boxed mean? I take it. I have my eyes checked regularly

It has really helped me...

nomoreheels profile image
nomoreheels in reply to kkminton

It's a black framed message by the FDA in the US Kimberly. You'll find them on the patient information leaflet & they carry warning/s of the specific med. I would think it's this accessdata.fda.gov/drugsatf...

The warning to physicians.

I'm pleased it's working for you Kimberly. As long as you have your eyes checked annually (or more often if required) by an Optometrist (high street, I think it's the same as here) & you tell him that you're on HCQ then that should be fine. I was on HCQ for a year, it caused light sensitivity so my Consultant had me seen by the Opthalmologist (hospital) regularly though it never developed into anything or reminopathy, the rare condition it's recommended we have annual eye checks for.

Hope this helps.

Hessie5 profile image
Hessie5

Hi Bassie - sorry I missed this post. I started Xeljanz three week ago now. Not convinced as wake up every morning with sore hands, where it is difficult to make a fist. I am giving it another month. I was suppose to up to take two tablets a day but found that harder. So I shall see what the rheumatologist says when I meet with him next month. How are you getting on?

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