Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Anybody still taking xeljanz?

lretz
lretz
Hello all,

I've been on humira for almost 3 months with pain getting worse and worse. Dr said we would be talking about med change next appt if not better. I am strongly considering requesting xeljanz. I have been in such constant high level of pain that I just can't take it much longer and the majority of people seem to notice a difference within the first 2 weeks. I've read the previous threads, but most were from several months ago and I would really like to see how those that are still taking it are doing. The way I see it, I could rule it in or out fairly quickly instead of having to wait 4 months to figure out if something might work. Is anybody still taking it, or has everybody quit for 1 reason or another?
trinaunz
trinaunz
@Iretz - I'm still taking it; have been since around September. I like it, it seems to work essentially as well as the Actemra I was on before I started Xeljanz. The one drawback I notice is that if I forget to take either dose, morning or night, I am significantly more achy and likely to flare - so don't forget to take it every 12 hours. With Actemra, I could forget to take any of my other meds for days and I wouldn't notice a difference. The Xeljanz is less forgiving, so be sure you get your refills timely.

On the plus side, I have to say I love not having to go in for infusions once a month - I have half a day of my life back every 30 days. Also, the way my insurance works, the Xeljanz is a lot cheaper because I don't have to pay for the sundry extras I used to pay for that come with infusion (setting the needle, infusion nurse care, lab fees, etc).
depotblue
depotblue
is the actemra injection out yet?

Ros
smith101
smith101
I'm still on it. Been a blessing for me. My rhuemy would definitely agree with trinaunz's comment about how it's much less forgiving about missing a dose. She explained it as Xeljanz is a speedboat, it doesn't need to really build up in your system to know if it's working or not. Orencia infusions are like a barge and can take up to six months to know if it's working and the others are some sort of pleasure boats going at various speeds in between.

I knew after 48 hours it was working for me. The first week though the fatigue went through the roof and then wore off. Even though the fatigue was insane the joints felt fairly good that soon after starting it.
smith101
smith101
P.S. I did quit taking it for a while as somehow my copay went from $60 a month to $800. I did search all around for assistance, free samples, etc. to no avail.

Ironically still same insurance, same supplier, but it's back to $60 a month. They do see at one time I was charged $800 (which is what I should be charged according to my specialty pharmacy coverage for tier three) but for some odd reason it's back to $60 and thankfully it kept working the second time around.