Starshine
  • Female
  • Essex, MD
  • United States
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Starshine's Friends

  • Newjack
  • Frida Rupert
  • Xeljanz2015
  • cmdd20
  • Bee
  • sadele
  • lara
  • asp2014
  • Gail
  • Tomy Pereira
  • DJ88
  • Rach1992
  • kimberj
  • Julie
  • Nikki's Mom

Starshine's Discussions

Insurance companies that have covered Xeljanz

Started this discussion. Last reply by TimothyGonzalez Dec 28, 2018. 7 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 May 22. 32 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

Dr. King comment on Xeljanz trial to date

Started this discussion. Last reply by lara Feb 4, 2015. 19 Replies

I was lucky to get a response from Dr. King regarding an inquiry as to the results of the initial trial for Xeljanz.  I had spoken with him at the onset of the trials which is the only reason I think…Continue

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Latest Activity

ariel015 replied to Starshine's discussion Is anyone else not responding to Xeljanz?
"HI guys! I have been on 10 mg Xeljanz per day (5mg every morning and night) for just over 1.5 months now and I am still not seeing any results, in fact I am still getting new patches. For some background - I have had alopecia areata for 2.5 years…"
May 22
Merry and Starshine are now friends
Apr 20
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"What insurance do you have?  I am pretty sure that is illegal.  They should be reported to the Insurance Commission.  I have always found Zelsource to be helpful.  They sent me several bottles while I was waiting to see if I met…"
Mar 19
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Merry, have you tried to contact Zelsource Assistance.  Even if you don't  qualify, if you explain what happened, they may send you a bottle to get you through.  Just a thought.  Did you get a confirmation in writing from…"
Mar 19
Apple_eve replied to Starshine's discussion Trying to cope with diffuse AA
"Stop spamming! "
Aug 28, 2019
Scalp Allure replied to Starshine's discussion Trying to cope with diffuse AA
"Alopecia is a serious hairloss condition that affects more and more people each year. Scalp Micropigmentation is a great solution for many people dealing with Alopecia.  Throughout years of my SMP practice, I have worked with big number of…"
Aug 28, 2019
Apple_eve replied to Starshine's discussion Trying to cope with diffuse AA
"Hi Sarah, are you still on this forum and receiving  messages? If so,I would love to chat. I have been diagnosed with alopecia areata incognita (diffuse AA) and would really love someone else to talk to about it. thanks! "
Aug 13, 2019
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Football Fan.  Nice to hear from you as well.  You are also a long-time pioneer for this forum Even though Xeljanz did not work as well for you, you have not given up.  "
Jul 3, 2019
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you, Frida.  Xeljanz truly gave me my life back and although I have not posted on here in a while, I do check in from time to time and want to thank you for helping so many people just starting out.   This truly is an…"
Jul 3, 2019
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I am currently taking the normal dose of 5mg twice daily.  I was a slow responder initially, and upped my dose to 15 mgs for about 2 years.  I then went back to the normal dose of 10 mgs, which is what I am currently on.  I do have a…"
Jul 2, 2019
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Is anyone still getting Xeljanz through the Pfizer Patient Assistance Program, Xelsource?   After five years of getting Xeljanz though my insurance company, they have decided that are no longer going to approve it.  My doctor is…"
Jul 2, 2019

Profile Information

Relationship Status:
Married
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…

Hi

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.

D

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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