Quitting Xeljanz due to ineffectiveness

I have been on Xeljanz for over 2 years. I started at 5MG twice a day and then went to 10 MG twice a day. Aside from some improvement in fingernails and a little body hair (none on the head) Xeljanz has not worked for me.

I am going to see my doctor once a year to see if anything new comes out as there are some things in clinical trials. Also, I am going to keep reading this forum to see if others are having success.

Has anyone else given up on Xeljanz and waiting/hoping for something else to come out that will work?

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Permalink Reply by Tamera on January 4, 2020 at 8:35pm

I take xeljanz 5mg twice daily along with 1 Allegra 24 hour allergy tablet and I have a full head of hair and have since pairing the Allegra with the Xeljanz 2 years ago.

They work well together for me, I also have eye lashes, eye brows, some leg and arm hair too!

Permalink Reply by Frequenttraveler on January 5, 2020 at 7:17am

Why the Allegara? Is it anti inflammatory Tamera? Would Zyrtec work the same?

Permalink Reply by Tamera on January 6, 2020 at 10:58pm

It has something to do with tricking your body's immune response.

My Dr said it had to be Allegra, I take a generic of Allegra daily.

Permalink Reply by Rascalx2 on January 6, 2020 at 4:23pm

Hey Tamara, i was suggested to take allegra , i never did, curious for more defails.. did you always take xceljanz and allegra together? I take 20 mgs of xeljanz but never has been as thick as before loss.. did you take xeljanz then add the allegra to daily protocol? Please post... does it make you sleepy?

Permalink Reply by Tamera on January 6, 2020 at 11:03pm

I took just Xeljanz for 1 1/2 years without the Allegra and I still had to get the steroid injections every month.  I switched dermatologists in Dec 2017, the first thing my new derm Dr told me to try was the Allegra with the 2x daily Xeljanz.  Dec 2017 was the last time I had any steroid injections!

Allegra (fexofenadinne HCI 180mg) is non-drowsy.

Permalink Reply by Sam on January 6, 2020 at 7:53pm

When you started taking Xeljanz, what was your hair status?  Patchy or no hair on scalp?

Did you have eyelashes and eyebrows at the time?

How long did it take for you to start noticing regrowth at all?

If you don't mind me asking your age when you started taking this protocol?

Did you try other medicines (steroid injections, methotrexate, etc.) before this?

Thanks for sharing.

Permalink Reply by Superduper on January 6, 2020 at 8:52pm

While I have not taken xeljanz, I have been up to Yale and to Columbia Pres. to meet with some of the experts on this dosage. It can take 8-10 months to see regrowth on a JAK2 inhibitor. Start with 5 mg twice daily and increased to 10mg if needed after 3-4 months. They also pair it with oral 2.5 mg minoxidil 1-2 times daily and possibly add spironolactone 50mg twice daily. 

The thought is if you are 10 years past the initial diagnosis, regrowth rate is not too great. Otherwise, they are seeing about a 50% cosmetically acceptable salt score. Hope this helps. 

Permalink Reply by magmck on January 7, 2020 at 7:19pm

Hi superduper

ive been on xeljanz for 4 months now. 20 mg with faint vellus.  disappointing to hear that chances of regrowth over 10 years is low as I’ve had this for 11 years. Is there some research that indicates this or I suppose it’s to be expected that the longer you’ve had it the more resistant it will be. 

Permalink Reply by Superduper on January 8, 2020 at 6:24pm

Hey Magmck,

Think the most current research (as of August 2019) does show that after 10 years the follicle response rate is much lower; however, all this is evolving and lots of new treatments are being investigated with the biologics. Have you considered adding minoxidil and possibly spironolactone to the mix? This trio has helped some patients that did not have an overwhelming response to xeljanz alone. (P.S. Believe spironolactone acts as a testosterone blocker and may cause some undesirable side effects in males.)

Permalink Reply by magmck on February 4, 2020 at 6:09pm

Hi thanks for your advice .  I do have some faint but there eyelash/ eyebrow growth and some vellus on my head after using 20 mg generic xeljanz for around 4 months and will start  minoxidil on the vellus

 i have a dermatologist i have some  confidence in,  who after looking at my scalp said she thought my follicles were “ trying to wake up “

so who knows? Beacon pharmacy provide a cheap, accessible version of the medication and for me it’s worth giving it a go :-) I haven’t  heard of  spironolactone.  I’m seeing my Dermatologist in April and I think if there’s not much happening she will suggest steroids. I’ll check this out also.  I’m female so hopefully not an issue 

Thanks for the information 

Permalink Reply by Tamera on January 6, 2020 at 11:06pm

Sam, Is this question directed to me?

Permalink Reply by Sam on January 7, 2020 at 5:22pm

Yes it was.  Sorry, I am just getting to know this helpful site.....:)

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