Alopecia World
www.alopeciaworld.com
Xeljanz Users...Let's Stay Connected Here in 2016!
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
Replies to This Discussion
-
Permalink Reply by Xeljanzmiracle on
-
Linda, I hope that 4 a day will give you a big boost! We talked about getting together since we are both in Bay Area, so private message me and let me know a good day/time to meet for lunch. I'm in Oakland. Valeri
-
Permalink Reply by Cstarr on
-
I just finished my 3rd month and I have growth all over! My eyelashes are even getting longer you can actually see them with mascara!! My head is still very blonde and short but I am hopefull. I haven't felt any side effects but just got my blood work back and it appears that my cholesterol is high and my white blood count is below normal. I've started monitoring my diet and exercising but not sure if anything can help with the white blood count so my doctor may stop the meds. Hopefully this is temporary and my body will adjust, I'm so excited to see hair again!!!
-
-
Hi everyone, I've had AU since I was about 10 (33 currently). Started Xeljanz 5 wks ago (two 5mg pills a day) and haven't noticed anything (except for increased appetite and a little fatigue, lol). Hopefully it'll start kicking in soon. Good luck to everyone and thank you for all your posts.
-
Permalink Reply by sadele on
-
I have been exhausted since taking Xeljanz.. Just really run down.
I'm actually going to see a Holistic MD on Sept 12, (highly recommended by one of my patients who started Bastyr college here in Seattle), and I'm going to have EVERYTHING checked; extensive thyroid, adrenal, cortisol, allergy, and full hormone tests. I'm having good growth but it's shedding a lot. I've noticed that every hair that falls out has a white tip/bulb where it was attached to the scalp. I'm not sure if I have more production of DHT and it's getting to the hair, but something has to give.
I go back and see Dr King on Sept 26th.
I'll keep everyone posted.
-
Permalink Reply by Susan McAdams on
-
I haven't had any fatigue. If anything, my workouts have been more intense in the past year--maybe because I'm not feeling so depressed as I was before my hair grew back. Who knows?
My white blood cell counts and cholesterol levels have always been totally normal. So, as regrowth varies with individuals, so do possible side effects.
I would say, the only side effect I may have experienced is a little acne flair-ups in the past 6 months. But, my skin has been much better lately. Funny, but when I had AU (not a hair on my body), my skin was immaculate. Best it had ever been in my life. I would take a wild guess that it was because with no fine vellus hairs on my face during that time, the less likelihood that my pores would get clogged. My doctor said it's a possible explanation, but not enough anecdotal evidence nor research to back it up. But, it makes sense--right?
-
-
I have also been more energetic and really working out. I think this is definitely because I have not been depressed. Side effects have been about 10 pound weight gain (working out a lot more now) and slightly elevated white blood cell counts and cholesterol. My doctor is watching the blood counts, but is not worried at this point as it is only slight. I have been on Xeljanz for a year and a half, three tablets a day, with complete regrowth.
-
-
Hi Starshine,
This is a random question and if it's to much information for you, please feel free to not answer. But I'm wondering if birth control has any affect on xeljanz. Or, if it has any affect on hair shedding. Were you on it while taking xeljanz? Or anyone else who has had full re-growth? I'd be curious to see what the number of people who have had re-growth that or either on or off birth control.
I'm considering stopping mine to see if my shedding will stop... I just don't know.
-
Permalink Reply by strawberry on
-
Hi Sadele,
I called Xelsource a week or two ago to ask about birth control pills and they did do one study involving around 20 women. It seemed that one could take both Xeljanz and BCP together without any issues. However, the study was based on only one brand of BCP (I believe it was Microgestin), so I'm not sure about other brands. I was wondering whether or not I should stop taking BCP before starting Xeljanz, too.
-
-
Hi Sadele--
Just so you know, I have been on a birth control pill (Ortho Tri-Cyclin Low) before I started the Stanford trial and ever since. I remember asking the Stanford doctors before I started the trial of being on a BCP would be okay, and they said they actually preferred its since I was about to participate in a new medical trial with not fully known results at the time. I have never had any issues while taking both Xeljanz and a BCP, and I never read anything about the two types of meds being a conflict.
--Susan
-
-
Hi,
My son Billy has been on the med for one month and we are seeing his eyebrows and a few lashes start to come back! We are cautiously optimistic however he is suffering some pretty bad headaches from time to time. More so lately. Any one else have this issue or any suggestions. Needless to say we reached out to Dr. King.
Thanks!
© 2024 Created by Alopecia World.
Powered by
