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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Permalink Reply by Zimrie on December 24, 2015 at 12:09pm

I'll have to research this.   Nice picture.  

Permalink Reply by denvergal on December 24, 2015 at 1:38pm

Hey Guys!

Happy Holidays!  I met with Dr. Norris in Denver, CO and he prescribed me Methotrexate.  After doing some of my own research i determined it wasn't worth the risk to go on this med, esp when other people reported minimal results.  I asked about Xeljanz and he indicated that it wasn't approved and I would have to pay out of pocket which was outrageously expensive.  How did you get your doctors to prescribe so that insurance would cover it?  I have had Alopecia since age 12, initially it was AA and then progressed into Universalis.  A few years ago i lost one eye brow, but it has come back since. 

Permalink Reply by Sad in chicago on December 24, 2015 at 2:56pm

Good luck, that is awesome.  Is there any hope for FFA sufferers?  Anyone have any thoughts or discussions with medical community to add?  Thanks.

Permalink Reply by lindadarnell on December 24, 2015 at 5:50pm

Hi - Thank you for starting this group.  I am starting my second month of Xeljanz and find hope in hearing about other alopecia sufferers who are having good success with this drug.  Even though there has been no change yet, I am hopeful and pray that this will work for me too.

Linda

Permalink Reply by Niece on December 24, 2015 at 10:42pm

Your hair growth is very encouraging..please keep us all posted on any changes. I am so hopeful that in time there will be something SAFE that will promote hair growth and give all those with AU a chance to regrow their hair. All the best!

Permalink Reply by Smiley on December 25, 2015 at 12:38am
Thanks for this. I started Xeljanz, was afraid I wouldn't be able to fight infections, and stopped. Am about to go back on and hope to grow my own hair again (Alopecia Totalis).

Also hoping the drug might reduce my allergic reactions.

Have you had any bacterial or viral infections you felt you couldn't fight as a result of taking Xeljanz?
Permalink Reply by Sara on December 25, 2015 at 2:46pm
How can you afford to stay on it? I'm in a trial @ Columbia in NYC but it's ending and I won't be able to get the meds;( I'm sure my insurance won't pay $4000 a month!
Permalink Reply by lindadarnell on December 25, 2015 at 5:59pm

Thank God my insurance is covering the cost of the medication.  They fought it for a while but finally gave in after my dermatologist wouldn't give up pushing for it.  It was a long fight, over a year.

Permalink Reply by Susan McAdams on December 26, 2015 at 1:49am
Hi All--

Thanks for getting in on this discussion loop. Let's look after each other and continue to share our stories this year. Really necessary for all!

To answer a few questions--yes, I know a possible side effect of Xeljanz is raised cholesterol levels. Since I started last February, my bloodwork has always been good. I never had high cholesterol, and it never went up on the drug. No major respiratory issues. I had, I think, 3 or 4 colds over the past year, but I traveled a lot to the east coast as well as a trip to Paris. Two of those colds came on upon returns from my travels. Not unusual when having to fly on airplanes in tight quarters. And I did actually see improvements to some digestive/food sensitivity issues I had been having before I got on Xeljanz. Perhaps the drug helped in some way. I have no idea. The bottom line is, I have been perfectly normal, health-wise.

Thank you for the tips on the increase to Pfizer's co-pay from $8,000 to $12,000. When I get my next RX in January, I will make sure I am on top of that. That extra $4K will certainly be appreciated!

And for those of you who successfully lobbied your insurance companies to cover Xeljanz for alopecia, WHAT company is doing that? I just switched my medical insurance to Blue Shield of CA due to changes in insurance coverage under Obamacare. I previously had Healthnet and did not like them at all. If anyone who has coverage through their insurance can elaborate a bit more--please share who your carrier is and the steps you took to actually get covered. I did not think it was even possible to achieve since Xeljanz is not FDA approved for alopecia.

I am flying back to Stanford on January 5th to see Dr. Ko, who was my doctor throughout the Stanford trial. If anyone has any pressing questions you would like me to ask him, please let me know, and I will gather what information I can. Since I will continue on as a post-trial patient there, I will do whatever I can to milk as much information from the medical team as possible. And I will share it here with you all.

--Susan
Permalink Reply by Kristin on December 26, 2015 at 4:17pm
I've also seen improvement in GI issues with the Vytorin trial! It's nuts--gotta be related somehow!
Permalink Reply by hopeful on December 28, 2015 at 12:50pm

are you taking xeljanz as well?  i stopped due to acne and stomach probs.  

Permalink Reply by gowml on December 30, 2015 at 8:30pm

Susan, ask the doc if you can get a prescription to have a compounding pharmacy turn the pills into a topical cream. Now that you have near complete regrowth, I wonder if you can maintain it with the cream.

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