Where acceptance is all there is
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?
I was on Xeljanzfor a year at 60 mg a day and got not even one single vellus hair. I have now been on ruxolitinib for almost 7 months at 25 mg twice a day and I am starting to see some actual progress. I would definitely recommend trying Ruxolitinib if you can get your hands on it, it is very expensive, but I am fortunate that my insurance covers it.
do you mind me asking how long you have had alopecia. I read on another thread that if the onset of the disease is > 10 years ( As is the case with me unfortunately) then the likelihood of xeljanz being effective is much reduced. Have you had alopecia for this length of time and have they suggested this may be a reason for ineffectiveness. I notice clinical trials do not accept patients with 10 yrs duration of disease which would suggest this too. Trying not to feel too despondent at the thought
So sorry I only saw this now - I have been AU for three years. One of my doctors (Bordone in NYC) says that ruxolitinib (Jakavi) is way better at growing hair than Xeljanz, so for those who do not reposnd to Xeljanz, I highly recommend trying to get ruxo.
I would up the dosage. I was AU and 10mg did nothing for me and 15 mg only gave me velus hair and so I tried 20 mg and that worked; I had full regrowth. I’m still on it but no side effects apart from a bit of weight gain. I would definitely do 15mg for three months snd then try 20 if that doesn’t work. It seems a shame to give up now without trying the higher dosage. If you can’t get them from your doctor then you could buy he generic ones.
The person who posted stopping xeljanz, already tried upping the dose to 20 mgs
Sorry I misread it
Hi there. What do you mean by generic ones? I thought this was a prescription-only thing.
You can buy generic ones from beacon pharmacy in Bangladesh - there’s a thread on here about it. I am in the Uk and it’s not available here for alopecia and so I bought them, initially from Turkey but these were the real xleljanz ones and then I bought then from India snd it was costing me £600 per month but then I found out about the generic ones from Bangladesh ansnthehre so cheap and I’ve been taking them since March
I have also been on xeljanz for over 2 years and have almost full regrowth. 5 Mg twice a day did not do enough so upped to 3x a day and got back about 70% which was great but not really cosmetically acceptable. Added 10Mg of oral Minoxidil/day and this worked. I have maintained almost full regrowth (almost, still no eyelashes and eyebrows patchy). Did notice if I stop taking it, even for a week, get a LOT of hair loss over the next few weeks.
Have read that xeljanz only works for 3 out of 4 people which may be your issue. Have not tried Ruxolitinib but also read it's been working in the other trial.
Hi there -
This is an interesting read. I gave up treatment after 12 months of 142 monthly cortisone injection in my scalp . The next offering was something I would have had to rub on my head which would cause the scalp to burn and blister. That's when my hands went up and I tapped out in treatment. That was 1989 and I was 15. I haven't seen a doctor about alopecia since. I had no idea of all these treatments I'm reading on this post. Wow, sure has been a lot of advancement in the last 30 years. I think I will start researching all of this. Thanks for the education. Best of luck to all!
My doctor explained a few years ago that there were new drugs, and these may be the ones that she was talking about. However, she also explained that the breakthrough drugs had a real risk of developing cancers such as multiple myeloma. Not worth the risk for me.
Think there is a new 10 year safety study out about JAK 2 inhibitors. The last material I saw showed a 3% lifetime risk of getting lymphoma while using this class of meds. It looks like most of cases were older and had multiple auto immune diagnosis. My daughter has chosen to pass on these meds, but participated in a study at Columbia Presbyterian. The real mystery is what triggers alopecia. Lots of theories and one is that the bacterial balance is off in the lower colon. Think there is a lot of research going in that direction and could provide a real cure vs. treatment in the future. We can hope anyway....:-)