Anyone doing the Pfizer medication trial for RITLECITINIB? How is it working? They are now in Phase 2. You have to be under 50 to participate. Google Pfizer Alopecia is you want to participate. They will actually pay you for your participation and give you free medication.

Views: 4812

Reply to This

Replies to This Discussion

Again, another trial that excludes older people.  I am 72 and really resent the age discrimination factor in these medical trials.  Before someone chimes in with "But they are worried about the effects on people over a certain age since they might have preexisting conditions (I don't) and they are not as healthy as younger people (I am; probably healthier)", please consider the following.  At my age, I don't know how much time I have left, and even if it is many years (my female relatives live to their 100s), I don't know how many of those years left will be good years.  So I would like to have as decent a quality of life as possible.  I also believe at age 72, I am more than old enough to know what risks I wish to take with my health and which risks that I don't wish to take.  Sorry, but these trials are nothing more than age discrimination.  Even some of the more progressive medical professionals are starting to question the wisdom and fairness of excluding older patients from these trial studies.

hello if you wish I can give you the commercial mail for the generic xeljanz from beacon pharmacetical from Bangladesh the cost is 27 dollars per box of 11mg. add me as friend

Kevin, Thank you so very much!  I am seriously thinking about trying Xeljanz and had no idea where to begin in terms of ordering and/or from whom to order.  I will definitely add you as a friend.  Again, I very much appreciate your kindness and help in reaching out to me!

Kevin, I am not very tech savvy, and I don't find this particular website to be very helpful.  Exactly how do I add you as a Friend?

Greetings!  I was wondering if you would share the purchasing information for the tofacitinib from Bangladesh?  I would really appreciate it.  Don't know if you'll see this tonight, but if not, perhaps you can send information to my email?  alchemy_consulting@yahoo.com.

Thank you so much!

Shakira

Hi Kevin,

Hope you're doing well! 

I just sent you a friend request. Can you please send me their email as well?

Thanks in advance!

Sabine I agree! I am 66 had a full beautiful head of thick hair, last year over a period of 4 months lost everything, eyebrows, lashes not a hair on my body.  Out of no where! no history of alopecia. 

I would love to participate in the Pfizer study but I am over 50! hopefully the JAK inhibitor will be available to everyone sometime soon.  No sign of any hair returning a year later, losing the eyelashes is the worst.  I wrote to them asking why we are discriminated against?  blanket response extremely hurtful.  Take Care better days are coming. 

Thank you, Linda!!  I was beginning to think the age discrimination was my imagination, but apparently not.  My story is somewhat similar to yours.  All my life, I had the thickest head of hair, you could ever imagine.  Seasoned hair dressers use to cringe when I walked through their door.  I was told when I called for an appointment to please let the receptionist know my name and that I would need extra people because of the time it took for a cut or a coloring.  I always had to have two people working on me (seriously!).  At age 24, I noticed one circular bald spot (about the size of a silver dollar).  It went away on its own as the hair started growing back within 3 to 4 months at its natural color (not white stuff).  After that, I would get one single bald spot every 5 or 6 years.  Never more than that one small spot, and it always grew back on its own in the usual 3 or 4 months.  For some unknown reason, at about age 60, the spots became diffuse and did not grow back.  If one did, two more took it's place.  At age 65, I became AU with a matter of 2 months, and I remain that way.  I am absolutely disgusted with the blanket responses that I also get in the form of thinly veiled age discrimination.  I am thinking of order the Pfizer to use off-label and finding out the necessary routine blood testing that I need and just paying for it out of pocket.  I wish Big Pharma would realize that young people have lots of time ahead of them to deal with the problem and enjoy their lives.  People my age do not, and I would like to be able to enjoy whatever time I have left without having to deal with this autoimmune disease and the idiotic responses I get from Big Pharma.  Sorry for the long rant, but if we do not stand up and fight against age discrimination who else will?  Too many young people think they are way more important than they are!

Hi Linda and Sabine, I'm sorry that they discriminate by age.  They should just inform patients that there could be unknown hazardous effects and then let patients decide whether to participate or not (kind of like how they did for the children/adult covid vaccine trials!). 

I understand you're willing to take the risk in order to have your quality of life and peace of mind back!  Keep speaking up! 

If there's any way to get a fake ID and lie about your age, change your age on your medical records, etc. I'd say go for it.  Whatever it takes!  

It's extremely frustrating how there are some very promising advances in alopecias, but it is not accessible more broadly to those who are willing to take the risks. 

I'm on the trial in Australia.  It's in Phase 3 here and I'm not being paid, though I do receive free mediation.  I've been on it since August 2020 and its very effective.  Substantial head regrowth (just started regaining colour), good beard regrowth (also regaining colour), full eyelashes, and eyebrows have just started regrowing about a month ago (they're now growing fast!  probably 1 month away from 80-100% regrowth).

Sydap what are they using for the Australia trials? Is it the JAK inhibitors?
Thank you Linda

Hi Linda, I'm participating in the PF-06651600 (Ritlecitinib) trial in Sydney.  So happy with the results.  My eyebrows are coming in really strong, and the white growth on my head is now re-gaining its natural colour.  Hopefully this medication will be approved soon.

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