JAK

[Leviset]

JAK Inhibitors.

Having gone through all the usual drugs from 1996 - 2000, I was then put on a number of different Biologics over the last 15 years. The pattern has been having infusions at Hospital up to self injection of Abatacept at home. Some treatments were partly successful, others didn’t work at all and the working ones usually stopped working after 18 months. I know Biologics can be very successful but they don’t work for me. Just before Lockdown I had a Rheumatologist appointment and they put me forward for JAK treatment to possibly start in August. Does anyone have any experience or been on JAKs please?

Thanks

Dennis

[KittyJ]

Do you know which one you will be on Dennis? If you do and put that into the search box and filter for NRAS then posts about it will come up 😊

[Claire32]

Hi

I started a JAK medication 3 weeks ago called Baricitnib.

I was in a huge flare for a year (was on enbrel and methotrexate) then tried Rituximab and had a allergic reaction to it and now I’m on this.

I must say I like the idea that If you need to stop taking it it’s out of your system very quickly.

Also I do feel better already, with no side effects so far. I did have some tummy pains for the first couple of days and then they disappeared.

Good luck with your new medication. Wishing you all the best.

Claire

[Moomin8 in reply to Claire32]

Hi, could I ask how you're getting on with Baricitnib now?

[oldtimer]

Lots of previous posts on these drugs - have a look through the search box.

There's information on them on the NRAS treatment pages too.

[RobbieM]

I have been taking baracitinib for about a year now..no side effects and worked really well very quickly, however recently it hasn't been as effective so have an appointment next week to look at alternatives which are now very scarce having gone through all of the biological options.

[wishbone in reply to RobbieM]

My baricitinib doesn't seem as effective this past couple of weeks. I'm taking just 2g and rheumy want to increase it to 3g a day... 2g and 4g on alternate days. If the pain gets any worse then I think I'll have to take up their offer though I am reuctant to do so. I've been taking baricitinib for around 18 months.

[Neonkittie17]

I think people like the personal experiences as opposed to looking up the med on official pages as well. 😀

[masonman]

Hi, I have been taking 4mg Baricitinib (Olumiant) for 4 weeks now, having been on Rituximab for several years, that stopped working.

It is helping with the pain and swelling of my hands, but I continue to be extremely tired.

Maybe that will improve with time, slight stomach pains for a couple of weeks, but no more problems with this medication.

Hope all goes well for you.

Regards Chris

[Angjoplin]

I'm much the same as you. Been on every single drug and they've either not worked, they've made me ill or I've been allergic to them.

I'm on baricitinib and its brilliant. No flare ups for months. Touch wood.

The only problem is with so many failed drugs I'm left with joint damage.

Fingers crossed the baricitinib will keep working for some time to come. I was giving up hope anything would ever work.

Good luck.

[Javea]

I have been on Baricitinib for eighteen months and for me it has been a miracle treatment. There are, of course, side affects but the overall improvement is well worth the disadvantages. One that I was not expecting is the dryness of my eyes and my mouth which feels like the Sahara desert at night. I have also had upper respiratory tract infections and the ever present tiredness/exhaustion. However, I can now walk again and drive a car and eat with normal cutlery. I didn't think that I would ever achieve that. I just hope that this drug keeps working for me.

Good luck to you.

[jacbub103]

I’ve been on Tofacitinib for 18 months...life changing x

[Vonnie10]

I had tof didn’t work for me