Xeljanz Users...Let's Stay Connected Here in 2016!

Hi Friends--

I want to thank so many for following my discussion link, "My Stanford trial experience, Part 2 (Xeljanz)" throughout the bulk of 2015. I began participation in the trial in late January, got my first RX for Xeljanz in February, and started to see the first signs of regrowth 3 1/2 months in. After the trial ended, I opted to stay on the drug, and now I am a post-trial patient for the doctors at Stanford. I will continue to fly up there from Los Angeles once every 3 months or so to provide them more data with the hope that maybe the FDA will one day approve Xeljanz for alopecia! As long as my bloodwork remains healthy, I anticipate staying on the drug for the forseeable future. I have had no negative side effects on Xeljanz since I started. If anything, it has calmed down my overactive immune system and possibly helped settle some food sensitivities I had been developing last year.

I am starting this discussion because I really hope those of us who are currently on Xeljanz (or are about to begin) will want to keep tabs on each other. I have read some posts on other links where patients stopped or reduced the drug, and their hair began to quickly fall out. However, I DO know that alopecia can go into remission. It did for me from early 2009 until the end of 2012. Four years of spontaneous remission! With no drugs. I hold onto hope that Xeljanz may help push some of us into remission, allowing us to taper back on the dosage for some time without devastating relapse. Maybe that's not in the cards. In any case, we are the lab rats right now! So, we need to look after each other and share our stories--whether they are good or bad. My attached photo shows me a week ago--12/15/15. I will continue to post more photos as time goes by. Please all do the same. Let's band together in 2016 and get some viable treatments approved for this cruel disorder!

XO
Susan

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Replies to This Discussion

Permalink Reply by Football fan on January 19, 2016 at 1:04am
Hi Susan the post is on ADML's site.Seems like she didn't change anything still on 2 xeljanz and 2 Plaquenil.Not good news!
Permalink Reply by Susan McAdams on January 19, 2016 at 4:28am
Which page number? I couldn't find the post.
Permalink Reply by Starshine on January 19, 2016 at 6:40am
Page 177.
Permalink Reply by bunty on January 23, 2016 at 9:04am

hello can u tell me what is the cost of  (Xeljanz)" for one unit..

thaks

Permalink Reply by Susan McAdams on January 23, 2016 at 11:05am
It depends on what pharmacy you you. The average price for 60 pills is $2,700.
Permalink Reply by texas2016 on February 8, 2016 at 10:33pm

I was just prescribed Xeljanz two weeks ago and eager to start the treatment, but waiting to hear back from insurance company.

However, CVS is going to charge me $6,660.00 for 60 pills.  I thought one month was ~$3,000?  Is this CVS price correct?

Permalink Reply by cmdd20 on February 9, 2016 at 10:55am

That sounds very high, though could be a Texas thing (assuming that's where you're from).  Would call around for somewhere cheaper.  In NY, ~$3,500 is reasonable.  Some online pharmacies have it a bit cheaper but the issue is most don't accept the copay card, so you have to go out of pocket and then submit the rebate form to Xelsource.  Xelsource is in no rush to reimburse you. 

Permalink Reply by Xeljanz2015 on February 9, 2016 at 3:13pm

Texas2016, I used this pharmacy before my insurance started covering. They accept the copay card and they shipped it to me for about $30. Not sure how much it's now, but it was about $2500 last year.

Quality Care Drug 

33 Main St, Centerbrook, CT

860-767-0206

Permalink Reply by Sam on February 10, 2016 at 1:33pm

I was recently prescribed with Xeljanz as well.  But of course, my insurance denied as it is not FDA approved for Alopecia. Trying to use the pfizer co-pay card; but appears to have some bureacracy as well for the same reason.  Also trying to enroll in Xelsource, but expecting the same dilema for the same reason.  Are most of the Xeljanz participants paying out of their own pocket for the prescription?

If your insurance is covering for Xeljanz, how did you go about convincing them?

Permalink Reply by Xeljanzmiracle on February 10, 2016 at 2:21pm
Sam, I have been receiving FREE Xeljanz thru their Hardship Program for 6 months. Please read my discussion entitled "From Totally Bald to Regrowth in One Month" and also have Xelsource mail you the 2 forms to enroll. In order to receive Xeljanz thru Xelsource, your insurance MUST DENY COVERAGE. I wish you the best!
Permalink Reply by Jcortez05 on February 10, 2016 at 2:27pm
I receive xeljanz through them and just didn't tell them k had insurance bc my insurance doesn't cover it ( I checked) and rather than battling with them I skipped it all together and just said no insurance and got the copay card .. I use that to cover the full amount . I don't plan on being on it much longer though .. Once I finish the last 5 bottles I will not go back on just my personal choice . I'm hoping it continues to grow once I stop
Permalink Reply by Sam on February 10, 2016 at 2:37pm

Thanks for sharing.  Did you state "Alopecia" on your Xelsource (vs. RA) enrollment form?  I assume the prescribing doctor had specified as Alopecia as well.  Pfizer still approved it for Alopecia?  Thanks.

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