Alopecia World
www.alopeciaworld.com
Quitting Xeljanz due to ineffectiveness
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?
Replies to This Discussion
-
Permalink Reply by Ilaria Di leo on
-
I wouldn't be surprised if it's a gut issue! There are many diseases that stem from gut issues!
-
-
Yea, I agree 100%
-
-
Gut Dysbiosis In Alopecia Areata Patients Reveals Overabundance of Firmicutes
and Under Representation of Bacteroides
Brigitte N. Sallee MD1, Rolando Perez-Lorenzo PhD1, Eddy HC. Wang PhD1, Alexa R. Abdelaziz1, James C. Chen PhD1, Lindsey A. Bordone MD1, Angela M. Christiano PhD1,2
1 Department of Dermatology, Columbia University.
2 Department of Genetics, Columbia University.
Alopecia Areata (AA) is one of the most prevalent autoimmune disorders in humans leading to patchy or total loss hair with about a 2% lifetime prevalence. AA has a significant impact on patients’ quality of life, and associations with other autoimmune diseases. The development of AA is influenced by genetic, immunological, and environmental factors, though these are not completely defined. The gut microbiome has an immunomodulatory effect capable of eliciting pathologic immune responses beyond the gut. Our recent studies in the C3H/HeJ mouse model of AA showed that oral broad spectrum antibiotics prevented onset of AA, suggesting the gut microbiota is required for AA onset. Thus, to determine the microbiome composition of patients with AA, we collected skin swabs, hair follicle samples, and stool samples from a cohort of 26 AA patients. Analysis of 16S rRNA sequencing on stool samples revealed significant differential representation of bacterial taxa, between AA patients and healthy subject specifically, members of the firmicutes and bacteroides phyla, similar to our mouse model findings. When AA patients were compared to healthy controls we found under representation the bacteroides phyla and over representation of the firmicutes phyla in AA gut microbiome, similar to changes reported in other autoimmune disorders. Importantly, there was no difference in the skin or hair follicle microbiome in AA patients as compared to healthy controls, underscoring the importance of gut microbiota dysbiosis in AA patients. The presence of gut microbiota dysbiosis in human AA patients provides a rationale for the development of novel therapeutic strategies for AA patients, including Fecal Microbiota Transfer (FMT) and targeted microbial therapy, since restoring the gut microbiota composition to a healthy state has been suggested as an approach to improve the course of autoimmune diseases, such as AA.
-
Permalink Reply by Rascalx2 on
-
No kidding gut issues ? What do you suggest? Everyone talks of diet ... what exactly do find works ?
-
-
Columbia/Pres was looking at FMT (fecal microbiota transplant) as a possible treatment. It is currently used for antibiotic resistant C diff infections. Apparently, two AU patients who developed antibiotic resistant C diff infections in the hospital received these transplants and regrew their hair. Believe there is Boston company that will grow the missing bacteria lab and put it in a slow dissolve pill that melts in the lower colon vs in the stomach or small intestine. I am not sure if Columbia has received FDA approval to do human trials yet. My daughter thought it is not something she does want to be the guinea pig for....
-
-
Thanks Superduper, interesting. I’m not in ny and looks like the Rx costs nearly $50,000/yr so not available outside of a clinical trial.
-
-
If this trial is successful, it will be offered throughout the U.S. You cannot get the 600 mg does outside the trial currently even if you want it. Will update the group as more info is available.
Gut microbial issues might be the villain in many cases....we will see.
-
-
Maybe another med would work for you, dupilumab. I am not sure what the progress is at this point, but some alopecians have fully regrown their hair and rolled off the meds. Believe the trial is for 600 mg injectable per day.
It also acts on the immune system, but possible side effects seem much less serious.
Here is a link to learn more if interested:
https://www.mountsinai.org/clinical-trials/treatment-of-alopecia-ar...
You must be in the NYC area.
-
-
I was also on Xeljanz for a year. At about 2-3 months, I did have some brow, lashes and some scalp hair come in, but a few weeks later, while still on the Xeljanz, it all fell back out. I continued on the dose for another 9 months and nothing. My insurance would not cover a dose increase and after taking it for so long with no regrowth I didn't want to stay on it in fear of potential side effects that could arise down the road.
I have also tried Methotrexate, injections, many creams/ointments, and Dupixient - all with zero side effects, but zero regrowth. :(
-
-
What was your dose of Dupixient? Did you participate in the trial in NYC at Rockefeller U?
-
-
My doctor said there new biologics on the horizon. Who knows, they might work better (and may be even less expensive than Xeljanz. FYI, Xeljanz is now available in a topical solution, for those who can't get or dont want to take the pills
-
-
Aclaris scrapped their topical JAK 2 for ineffectiveness. I thought it had pretty much been abandoned by many due to the lack of good regrowth. Pfizer may be coming out with a JAK2 oral for alopecia. Very true that there are lots of biologics in the pipeline that show promise. The cost must be affordable though or there might as well not be a treatment. The insurance companies will balk at the expense and most cannot afford such an expensive treatment.
© 2024 Created by Alopecia World.
Powered by
