Xeljanz (Tofacitinib Citrate): My experience on the trial

I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.

I thought it would be nice for everyone if I documented my progress on here. 

Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.

The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results. 

I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.

-----------------------------

AW:  Other discussions on Xeljanz / Tofacitinib

https://alopeciaworld.com/main/search/search?q=Tofacitinib

 

Views: 927437

▶ Reply to This

Replies to This Discussion

Permalink Reply by Frida Rupert on February 4, 2020 at 12:33am

Oh Mashloum this must be so hard for you and your wife. I know that Beacon is now producing a baricitinib generic and I wonder if Anas may respond better to that as it is a stronger Jak 2 inhibitor. It’s less researched than Tofacitinib but the risks seem quite similar. I’m so sorry that poor Anas has to deal with this.

Permalink Reply by Newjack on January 27, 2020 at 10:17pm

Has anyone had surgery on Xeljanz? I just had surgery done and my surgeon wasn't all that concerned that I was on Xelijanz, he looked into it and said it, if it was prednisone than I would have to stop it but Xeljianz doesn't act the same and this surgery was a few incisions and a few sutures. I am not going to lie, I am worried. I had the surgery on Saturday 1/25 

I am wondering if anyone had a surgery where a few cuts had to be made and still stayed on it.

Permalink Reply by Apple on January 28, 2020 at 1:49am

I’ve had numerous surgeries on xeljanz, no problems; my surgeons were all aware of my medication. Continue as prescribed. If you stop taking it for surgery all sx seem to be exaggerated due to body under stress to repair site. That was my own findings anyway.

Permalink Reply by Newjack on January 28, 2020 at 1:50am

Thanks apple

Permalink Reply by Frida Rupert on February 4, 2020 at 12:29am

Sorry for delayed response New Jack - I’ve had surgery and recovered fine. I weaned down the week before, and then restarted once the incisions healed. My main concern is what i term as rebound inflammation - the body overreacting to what it believes is a threat (incision wound) - which could cause minor shed, though this didn’t seem to happen for me.

Permalink Reply by Newjack on February 4, 2020 at 1:11am

Thanks Frida, I haven't been off my meds. My doctor saw me today and said everything looks good and no infection. It's been only 9 days and could take 2 months to fully heal but the incision should take about 2-4 weeks. My stitches are already coming out. A little earlier but my doctor didn't sell to concerned

Permalink Reply by Frida Rupert on February 4, 2020 at 2:39am

Hi Jack, healed for me was just crusted over (sorry to be gross), I went back into full dose after 3 days!  Great to hear you are doing well, I’ve found I’m less sick and prone to infection on this med- go figure?!?

Permalink Reply by nzahir on February 5, 2020 at 6:58pm

Is anyone else here on the Pfizer Assistance Program?

I am on it for 10mg a day, but is anyone on prescribed 15-20mg and Pfizer is giving it to you all for free?

Permalink Reply by robertking on February 9, 2020 at 12:45pm

How has 10mg working for you, i started straight on 15mg and had great result but now wonder if 10 would have worked.

Permalink Reply by Sahel on February 5, 2020 at 9:44pm

Hello if anyone is comming to jordan amman and stay for 3 weeks I can show you the result of my treatment in the time phase it's a cream we came up with after having alopecia u for 15 years and more if anyone interested WhatsApp Me 00962796825349

Permalink Reply by mastros on February 10, 2020 at 4:19am

Hi all, 

TL;DR: Here is my latest update. I am almost 3 years now on Xeljanz. I am taking Xeljanz 20mg/day - twice per week 15mg/day - and Minoxidil 5mg/day. Doing good with small spots that come and go.

Last posted was in the beginning of August following the wisdom teeth extraction and stopping Xeljanz for 12 days in total.

I had a few larger spots that came up in end of September probably because I spent 3 weeks drinking almost every day. 

Returned back to my normal routine and the hair recovered within 2 months. Got to say that it was the first time in a while I opened such large spots and felt confident that they will fill up. Being a good responder on Xeljanz for a while and working on feeling better with myself, has really improved my attitude towards new spots.

Spots are coming and going, some more persistent than others. Yet nothing worrisome.

I have been for the past 1,5 month taking 15 mg Xeljanz twice per week instead of the usual 20mg (Dr. King and I have been discussing about it for a while and now I thought was the right time to try it). Not sure if something changed. I am inconclusive now, so I m going to keep it for February as well and see how it goes.

I have another couple of wisdom teeth removals in early March so I will have to stop again, and I am much more chill with that than I was the first time :-)  

I have the latest photos with the whole last 34 months road included in the attachment.

Side Note: Reading the thread to catch up on it, I got to give props btw to @Frida Rupert for being so active continuously.

 

Attachments:
Permalink Reply by Maurice on February 17, 2020 at 12:12pm

Awesome. You nearly had full regrowth in about less than a year.

I was wondering whether you are experiencing any side effects at all.

Been planning for a long time to start on Xeljanz myself, but afraid to take the step. I'm 10 years AU now.. last couple of years I had some hairs regrow on my scalp during summer time here in the Netherlands. But nothing significant, maximum 2 centimer hairs, few and far between. You'd have to pay attention to notice, but it's more than I used to get. Also I would probably have to get Xeljanz illegally. I'm glad that you guys have the chance to xeljanz get it in the USA, and it's wonderful to see the regrowth. That being said, I am anxious of the long-term side effects.

I will probably schedule an appointment with a dermatologist in about a month or so when I have saved up enough money.

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service