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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
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
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Permalink Reply by Susan McAdams on
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Hi Folks--
I am just getting on a plane to head up to Stanford to meet with my doctors for my now quarterly post-trial patient appointments. A few people have asked me if I can get the formula for the cream so that people can start asking their compounding pharmacies to create it for them. I don't know if I will be able to get that info, but I will certainly ask!
And good news: I called CVS Specialty Pharmacy in Redlands yesterday. That was the site where I got my Xeljanz RX for half of 2015 and was able to apply my Pfizer co-pay card for 3 months. I requested a refill and asked the pharmacist to reactivate my co-pay card since it is the new year. All went through smoothly! I didn't have to resubmit any new requests or paperwork--my card # was already on my file, and they just ran it when processing the refill. And boom! A new RX for $0.00! That should be for 4 months in 2016. Yay!
Attached, is a photo at the beautiful Cal-A-Vie Health Spa I treated myself to for my birthday last week. Everyone I worked out with (bandana-free!) complimented my chic pixie do! Here's to a happy and healthy 2016!
--Susan - Attachments:
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image.jpeg, 5.7 MB
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Permalink Reply by singh on
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Wow thank you Susan!! Yeh plz ask for formulae if possible and could you also ask him why does he feel some people are losing there hair on xeljanz could it just be they are lowering there dose too soon?? And did you get 4 bottles free as I heard it is now 12k! And you look great !!:))
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You may want to print this out to show your docs. Perhaps they can get in touch with Dr. King.
http://news.yale.edu/2015/12/09/research-news-yale-doctors-help-bal...
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Hi Again, Everyone--
So, I just concluded my now quarterly appointment with Dr. Ko up at Stanford (as a post-trial patient). We talked about research/issues/plans related to being on Xeljanz. I will share what we discussed:
1. Basically, there are 3 JAK inhibitors out there that have been looked at for hair regrowth: tofacitinib (aka: Xeljanz), ruxolitinib, and baricitinib. Each targets different JAK pathways (noted as 1,2, or 3). For more understanding of pathways, Google it. For all intents and purposes here, tofacitinib targets Pathways 1 & 3. Ruxolitinib targets Pathways 1 & 2. And I'm not sure what baricitinib targets. Dr. Ko explained that patients on Xeljanz have experienced far fewer adverse side effects than these other two drugs. In particular, Pathway 2 is somehow related and situated in the blood cells. As a result, patients on ruxolitinib have had some cases of anemia. Because it targets Pathway 2. Baricitinib has also had more side effects than tofacitinib, but the doctor wasn't sure why that drug has been problematic. Basically, then, they are finding that patients on tofacitinib are exhibiting far fewer (if any) side effects while in the drug. So tofacitinib (Xeljanz) will continue to be the JAK inhibitor or choice for the alopecia community (until something better comes along).
2. Dr. Ko and I talked for awhile about the topical cream that Dr. Brett King has been compounding and using on patients--most recently, a 17-yr-old girl who had great results. The cream issue is a sticky one (no pun intended). First, there have been so few patients to use it, so it is not prudent to jump to the conclusion that the cream will work with such speed and effectiveness for everyone. If it is less systematic, does it make sense that the cream will work better (not considering side effects here)? It does not seem to make sense from a logical perspective. Perhaps the cream stimulates initial fast results, but longterm, who knows? It is way too early to tell. Some evidence that HAS come out has shown that Xeljanz cream is NOT effective for psoriasis relief. The pills, however, are. And another thing to consider is--HOW does one apply the cream twice a day if you have a fully regrown head of hair??? The medicine would ultimately have to be made into a liquid or foam (like Rogaine), or those with hair can't use it. And what to do about sensitive areas like eyelashes or brows? I wouldn't want this drug near my eyes. So, we all need to be realistic about the cream. It may help jumpstart regrowth faster, but there is not enough evidence to show that it will do so for everyone. And once you have a full head of hair, the cream would be useless.
3. The handful of us in the Stanford post-trial are all doing really well. We all have great regrowth. Some took a little longer (I took 3 1/2 months before I saw anything), but we are all now progressing to full coverage. And none of us have negative side effects at this time. We are all approaching 1 year on Xeljanz.
4. When I return to Stanford in 3-4 months, if I have full regrowth (currently, I am 95% there), Dr. Ko and I will start discussing the possibility of SLOWLY reducing the dosage. Very, very gradually, if we do. He is well aware that several patients in various studies who stopped or reduced their Xelajnz dosages saw shedding within 4-12 weeks. So it will be a crap shoot and I will be a guinea pig again. Does that mean I will let all my hair fall out again? I will do everything I need to do that doesn't happen. So my next appointment will be filled with discussion about the research out there. If too much evidence piles up showing that small reductions in dosage prompt shedding, then I will attempt to stay on my regular dosage (5 mg twice daily) for longer.
That's where I'm at!
--Susan
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That was a great post! We truly appreciate you sharing your journey and what the future holds. My daughter just passed 5 months on Xeljanz. Full regrowth of eye brows and hair. She has had flair ups with acne so the Dr prescribed doxycycline. Beyond that...no side effects.
So as some are climbing up the hill to regain growth....many who reach the top are trying to figure out how a future maintenance dosage would work. Many who reduce their dosage experience the awful shed and are trying to regain momentum. It seems that there is always something to worry about. Thanks again...great info
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Thanks for the detailed report! Sounds like there are more questions than answers and hopefully with time we can get more answers.
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Thanks for the great update Susan! Wouldn't the cream be used let's say after growth as a shampoo kind of thing if you had full hair regrowth ? It's good news I guess for tofacitinib although when will they approve this for alopecians ? I doubt they do which means it's going to be expensive !! Baricitinib is likely to get approved for arthritis as I read it aced trials for arthritis and is in phase 4 which then will likely get approved for 2017. And the price might be cheaper.. I just hope these organisations just approve something for us all!
Have people been using baricitinib for alopecia? Can you get hold of this even if it's not yet approved ?
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Hi Singh--
Yesterday when I was talking to Dr. Ko up at Stanford, he said he would NEVER prescribe baricitinib for one of his patients. He said that JAK inhibitor has been showing nasty side effects. We didn't get into what they are and at what frequency, but I figured I would do a little research on that. If anyone has info on the safety of baricitinib, please share. Dr. Ko said so far, tofacitinib (Xeljanz) has clearly been shown to have the least number of side effects of the JAK inhibitors out there. Yes, it's expensive, but so are the other JAK's. And like you wrote, nothing is FDA approved for alopecia, and I'm not holding my breath that anything will in the near future.
As far as turning tofacitinib cream into a type of "shampoo" goes, that is just not possible. The whole point of the cream is that it has to really penetrate the skin surface to work at all. The WHOLE scalp, or hair will not grow (or fall out) on areas that are missed. A shampoo that you wash out after a few minutes totally defeats that purpose. Look at Rogaine--it comes in a foam or liquid formula and is applied twice a day without washing it out. If you don't use it consistently, it stops working. There are shampoos out there associated with the Rogaine drug, but they do nothing as far as getting the medication on the scalp. Even rogaine's own shampoo line is just a product that is supposed to strengthen the hair. It is not the drug itself.
Thus, one can see how impractical a cream would be. And Dr. Ko wasn't even certain how much tofacitinib is needed to compound it into a cream. Does a month's supply of toafcinib pills compounded into a 2% cream (I believe that is what Dr. King's formula is)equal a month's supply of cream? We don't know.
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Thank you a lot Susan for the reply ! Yes you make a very valid point ! You's are now the for front for us starter xeljanz users and I will pray you's maintain growth! I feel like are cure is going to be stem cells ! Let's just hope that can progress quickly ! You look amazing !
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Thank you so much for this very informative post.
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Susan,
The below article sort of supports Dr. Ko's comments about safety issues with modifying Jak 2. It however varies with the doctor's belief that Xeljanz is safer than Baricitinib. The good news is that there are a number of pharmaceutical companies working on treatments that will only modify Jak 1. Hopefully, these drugs will be effective treatments for AA/AU.
http://www.bioworld.com/content/incyte-right-direction-ceo-says-ana...
Per the article:
"Incyte backers hope the Janus kinase (JAK) inhibitor for moderate to severe rheumatoid arthritis (RA) will distinguish itself, as it already has begun to do, from the approved JAK inhibitor Xeljanz (tofacitinib) from New York-based Pfizer Inc., taken twice daily for RA.
"Everyone assumed there was going to be an advantage to having a more specific JAK inhibitor, but nobody expected, at least until recently, that baricitinib would have such a benign side-effect profile," said Raghuram Selvaraju, analyst with the investment bank MLV & Co. in New York. Xeljanz, he said, has been a "pretty significant commercial disappointment. People look at the efficacy profile and do not see an advantage vs. the injectables, and then they look at the safety profile and say, 'This is a really dirty drug – it's filthy.' Nasopharyngitis, diarrhea, immunological issues, opportunistic infections, hair loss, the list goes on and on. Clearly, pan-JAK is not the way to go."
But even baricitinib is "still a bi-specific JAK inhibitor – what you really want is JAK1 only," Selvaraju said."
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