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Starshine's Discussions

Olumiant, your experiences and opinions

Started this discussion. Last reply by Ricky_1008 Mar 6. 8 Replies

Hi all, I have been a long-time user of Xeljanz, about 9 years now.  I have complete hair regrowth from being AU.  I was taking 10 mgs a day.  Unfortunately,  since Olumiant was now FDA approved for…Continue

Insurance companies that have covered Xeljanz

Started this discussion. Last reply by sampeckard Feb 14, 2022. 11 Replies

I was wondering what insurance companies people have been able to get to cover Xeljanz for our condition. I am currently with Blue Cross and they have covered it for the past two years, but I now…Continue

Is anyone else not responding to Xeljanz?

Started this discussion. Last reply by ariel015 Oct 12, 2020. 34 Replies

,So I am now at 15 weeks on Xeljanz and have only gotten some diffuse vellus on scalp and sporadic tiny vellus elsewhere.  This is very disheartening after seeing all of the other people who are…Continue

Starting Xeljanz, have some questions

Started this discussion. Last reply by katiegirl Jun 7, 2015. 12 Replies

So after switching insurance companies,my derm was finally able to get my new insurance to approve Xeljanz for alopecia which is amazing. They pay half and the Pfizer Co-pay card pays the rest. I…Continue

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Latest Activity

Ricky_1008 replied to Starshine's discussion Olumiant, your experiences and opinions
"Guys Please advice"
Mar 6
Ricky_1008 replied to Starshine's discussion Olumiant, your experiences and opinions
"I am thinking of starting Oluminant, I have been AU for 3 years now. DO you think it will work? how long will it take for the recovery? Can I try to have a baby with my wife while on Oluminant? please advice . I am very scared."
Mar 1
Starshine left a comment for Aj95
"Can you send me your email again.  I will send you my transfer info today."
Jan 19
Starshine and Aj95 are now friends
Jan 19
Starshine replied to Starshine's discussion Olumiant, your experiences and opinions
"Hi Football Fan.  My doc appealed to the insurance and they did cover Xeljanz again for me, so I never started on the Olumiant.  However, I am interested in the Litfulo.  I think it looks to be the best so far as side effects and…"
Nov 2, 2023
Football fan replied to Starshine's discussion Olumiant, your experiences and opinions
"Taking the Olumiant till I see my Doctor again in January.I have only been on it for 6 weeks."
Nov 1, 2023
kevin replied to Starshine's discussion Olumiant, your experiences and opinions
"hello football fan I am like you bad answer with xeljanz and I tried olumiant 4mg 3 months and it is worse the least effective for 1 year I have been taking cibinqo 200 mg from pfizer jak 1 and it is the most effective but always poor response from…"
Oct 31, 2023
Football fan replied to Starshine's discussion Olumiant, your experiences and opinions
"Hi starshine never had any luck on zeljanz 10,15 or 20mg.Just started Olumiant about 4 weeks ago 4mg my insurance covered it with no problems.Also started Minoxidil pill about two weeks ago.Hope it works for me.Most medications start working…"
Oct 27, 2023
Happydiver replied to Starshine's discussion Olumiant, your experiences and opinions
"Hi all, I am male and had AU for the past 8-9 years. I have been on Olumiant 4mg for about 10 months. During the first 6 months, I had notice good hair growth in the chest area, facial hair and eyebrows. This was to the point where I could actually…"
Oct 27, 2023
Tonya replied to Starshine's discussion Olumiant, your experiences and opinions
"I am waiting to hear from others about Olumiant as well. How are the side effects for you? I’ve had alopecia totalis for about 26 years and my dermatologist states this will bring my hair back but I’m worried about the side…"
Oct 15, 2023
Starshine replied to NicoleT's discussion Xeljanz from India
"I simply used  like Bibby, I placed my order, only I used direct bank transfer.  My order was acknowledged that same day and I was sent an invoice.  As soon as I paid, they sent me a tracking receipt.  Two…"
Aug 18, 2023
Starshine replied to NicoleT's discussion Xeljanz from India
"I heard about NINA through the Facebook group JAK Inhibitors for Alopecia.  I believe someone on there tested it and found the ingredients to be very similar to the manufacturer, which is the same as Beacon's brand.  There is a lot of…"
Jul 24, 2023
Starshine replied to NicoleT's discussion Xeljanz from India
"Just email  You can Google their website at NIBA Healthcare"
Jul 23, 2023
Starshine replied to NicoleT's discussion Xeljanz from India
"I just received my order from NIBA.   They sent me a tracking number the day after I paid and my order came 7 days later.  Very good company to deal with, very professional and great customer service."
Jul 22, 2023
Starshine replied to NicoleT's discussion Xeljanz from India
"Sorry you had difficulty.  I did a ba k transfer through my bank and it went great.  NIBA sent me their bank info and an invoice with all their contact info.  I think their customer service has been great.  "
Jul 15, 2023
Starshine replied to NicoleT's discussion Xeljanz from India
"Hi  Merry.  No, no rx needed.  I just ordered.  It was very easy and they seem very fast and professional.  They sent me an invoice and I did a bank wire transfer. I just got the tracking receipt. Good luck."
Jul 14, 2023

Profile Information

Relationship Status:
About Me:
I live in Baltimore, Maryland and have recently been diagnosed with diffuse
AA. I am a legal secretary, married with three great kids.
Do you have alopecia?
Alopecia areata
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (15 comments)

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At 11:06am on November 4, 2015, Bee said…
Thank you so so much for the reply! I am starting the appeal process for Xeljanz with my Blue Cross. I am also considering changing my insurance now that it's open season. I just added Plaqunil, but would really love to give Xeljanz a shot. Did your insurance cover half right away, or did you go through the appeal process?
At 5:07pm on July 16, 2015, Jlhollow said…
Thanks for responding so quickly. I am sorry to hear you now have AU. I am feeling very lonely so it's nice to have some support.

What year did this all begin?

Did you have an initial round patch or was it always diffuse?

Also did your hair grow back while if was falling out?

Did you see exclamation point hairs? I haven't seen any.
At 11:11am on July 16, 2015, Jlhollow said…
Hi starshine. I seem to have a very similar experience to you. It's been 11 months of diffuse scalp loss. And 9 months of diffuse eyelash, eyebrow, nose hair loss. Recently I just noted that my leg hair and arm pit hair are growing very slowly. All my blood work came back fine. I do have hypothyroid but I'm on synthroid and have been on it for 3 years never with a problem. The last derm I went to was telling me she thinks it's diffuse alopecia areata. She said a biopsy wouldn't be able to tell. I'm wondering if I have chronic telogen effluvium.

I have a few questions for you. Did your hair grow back right away when you lost it. My hair is growing back but my growth can't keep up with my shedding. Also, do you see exclamation point hairs that fall out? I haven't seen any. Did you ever have any bald spots?
At 9:47am on May 22, 2015, Anisha said…

Hi, I have some questions about your insurance coverage. I have BCBS Carefirst insurance, but they just denied my claim for Xeljanz. I was wondering if you maybe elaborate on your approval process, or what your doctor specifically wrote or told the insurance company. I'd really appreciate it.  Thanks so much!

At 12:09pm on May 12, 2015, Julie said…

I have been aa on and off for about 7 years but lost all the hair on my head about three years ago.. i lost most my arm hair and leg hair, eyebrows.. but grew my eyebrows back when i was on methotrexate for about 8 months. i stopped the methotrexate to go onto xeljanz and have noticed my leg hair coming back and my underarms but still the same vellus hair on my head.. no terminal hair yet and its starting to get me worried because like you said it just makes you wonder if it's not for you when you see so many people having amazing results only after a few weeks! im on week 10 of it so am hoping that within the next couple weeks i see something.

i am getting the xeljanz through cvs using the pfizer copay card. that is up in two weeks os currently my dermatologist is trying to work with my insurance to get some of it covered. i may try to go through a rheumatologist if that doesnt work.

how about you?

At 11:32am on January 21, 2015, Gail said…


I would love to compare treatment..I just went yesterday and I'm having some strands come in so the doctor is happy about it but I want it grown in yesterday lol....but we shall see....hope you have a good day! :)

At 10:02pm on September 18, 2012, dmf said…

Hi Starshine. Funny coincidence - I was sitting in my derm's waiting room when I read your post. It was a very long wait to see him and the results were mixed.

The biopsy showed that I do have AA. He said that he trusts the results with 98% certainty. He explained that the biopsy showed a lot of inflammation around the bulb of the hair, at the root, beneath the scalp. So the idea is to get the inflammation to calm down which should create a healthier environment for hair to (hopefully) start growing again. This means steroids and we had a long discussion on what sort. He would have liked to do steroid shots but he respected my belief that the shots last time POSSIBLY triggered this shedding - like a rebound effect. He actually said, "Most other doctors would say that's impossible and it's just coincidence, but I'll say it's a possibility...but a very, very small one." What we decided to do is increase the steroid lotion to 4 times per week and continue the Rogaine 5%. I've been having quite a bit of scalp pain so I really hope it helps.

I'm going to see him again for a follow up in 5 weeks. If the inflammation doesn't look like it has subsided, I'll be more willing to try the shots again. I'm really uncomfortable with the idea of oral steroids, so that would be a last resort, and he'd need to be really persuasive! So that's my story and where I'm at.

It made me feel so good that you thought about me and checked in! How are you feeling? I hope you've had some better days than the last time we wrote to each other.


At 3:16pm on August 24, 2012, dmf said…

Thank you, Starshine. It helps a lot to know that you REALLY understand how I feel. I'm seeing my doctor on Sept 17 and it will be interesting to see what he says. When he did the biopsy he mentioned some more aggressive treatments like DCPC and oral prednisone. I am leaning away from using those but need to hear when he says first and then do more research. I'm glad we've become friends here and we can compare notes and get each other's opinions. They say knowledge is power - today I feel like that's kind of up for debate, though. Anyways, I appreciate your quick response and your support.

On another note, I think you have kids? How old are they and do they know what you're going through. I have not told my kids yet. The whole idea of telling them worries me. It might be easier once I have more info. I dunno.

At 2:07pm on August 24, 2012, dmf said…

So, I had an awful morning. I went to get my biopsy stitches out - and that was painless and easy. But it turned out they had received my biopsy results. AA was confirmed. My doctor wasn't there to discuss it with me - they brought in another doctor who had to rush out to see her own patients. The only good thing was it meant they found a way to move up my follow up appointment to mid-September.

I guess it's a good thing that I have a confirmed result. But it sure doesn't feel like a good thing. Even though I expected that result, it sure is hard to see it in print.

Sad day for me today. Struggling not to cry and just to cope. Going away on a vacation tomorrow and don't even feel like going. :(

At 10:07pm on August 23, 2012, dmf said…

I do use Rogaine only at night still. I plan to keep getting injections in brows but not sure about my head. Unfortunately, my derm's availability is very limited now so I'm not seeing him again until October! Till then it's just Rogaine and Nioxin. It is all very frustrating and confusing. Again, I am sorry if I made you feel worse, Starshine. Next time I share info I will choose my words more carefully. I'm stressed tonight because tomorrow I am getting my biopsy stitches out by someone (?) - I don't even know by who in my doctor's office since he won't even be there. Still waiting for my results. Hope you have a good night and that tomorrow is a good day for us both.



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