Starshine
  • Female
  • Essex, MD
  • United States
Share

Starshine's Friends

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

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 katiegirl Jun 27, 2015. 31 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

Gifts Received

Gift

Starshine has not received any gifts yet

Give a Gift

 

Starshine's Page

Latest Activity

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
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
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
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
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi CWS.  I have also had complete regrowth, going on five years now.  How long have you been on one a day?  I dropped from three to two and would love to go to one.  Please let us know how it goes if you eventually stop…"
Apr 3
LJBMD replied to Starshine's discussion Trying to cope with diffuse AA
"Hi starshine: do you live in Maryland? I sent you a friend request "
Mar 16
Starshine replied to Starshine's discussion Trying to cope with diffuse AA
"LJBMD, I am on oral.  Unfortunately the topical, which would be better for your daughter, has been proven not to work.  You need to find a doctor who will prescribe it and then find an insurance company that will cover it, as it is very…"
Feb 13
LJBMD replied to Starshine's discussion Trying to cope with diffuse AA
"Star Shine: are you on oral or topical? Any side effects? Does insurance cover it?"
Feb 13
Starshine replied to Starshine's discussion Trying to cope with diffuse AA
"I started this post in 2012 and soon after, I progressed to total AU.  I lost all scalp and body hair.  I was devastated.  After trying everything under the sun, which did not work, I finally tried Xeljanz in 2014.  My hair…"
Feb 13
LJBMD replied to Starshine's discussion Trying to cope with diffuse AA
"Essa: Thank you for your response. We are doing everything we can think of for her. She just got a second set of injections last week, and we are applying clobetasol once a day. She will begin high dose oral steroids this weekend. I have spoken to…"
Feb 13
essa replied to Starshine's discussion Trying to cope with diffuse AA
"Hi LJBMD - I'm having trouble replying to you directly on the site. I so truly feel for your daughter. I also developed AA as a teenager at 13, and it came and went for about ten years in a fairly manageable fashion. About 3 years ago (I'm…"
Feb 12
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"My 5-year anniversary on Xeljanz is coming up so I thought I would post a picture to give encouragement to anyone starting, or having a slow response, to Xeljanz.  I am one of the first pioneers, along with ADML, the founder of this…"
Feb 12
Sarahmiller90 replied to Starshine's discussion Trying to cope with diffuse AA
"Did all her labs come back normal? Mine did, but my dermatologist said ferritin of 25 is in "normal" range for a hospital but they like it to be between 70-110 for normal hair growth. But I have to take feosol for up to 4 months before I…"
Feb 12
LJBMD replied to Starshine's discussion Trying to cope with diffuse AA
"Yes! My 15 yo daughter was just diagnosed. It has been brutal. She has lost 70% of her hair at least and continues to shed. She was seen immediately by a dermatologist who injected her spots and she uses clobetasol solution. He have added vitamins,…"
Feb 12
Sarahmiller90 replied to Starshine's discussion Trying to cope with diffuse AA
"Hello LJBMD, I am doing ok. My hair loss comes and goes. It started back up recently. I can see where there's so many short hairs, meaning new hair growth, but then some manage to fall back out. The more stressed I am, then it all kicks up…"
Feb 12
LJBMD replied to Starshine's discussion Trying to cope with diffuse AA
"Hi Sarahmiller90-  I am new to this group and I just saw your post. My 15-year-old daughter has just been diagnosed with alopecia areata and has diffuse thinning. She has gotten several steroid injections into her scalp and uses topical…"
Feb 9

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 (19 comments)

You need to be a member of Alopecia World to add comments!

Join Alopecia World

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 9:20am on September 22, 2012, bekind said…

that's great that you are able to try another option for treatment! I do hope that it works out for you. Please keep me posted on your progress, side effects, etc. I hope you can stop the progress now at 60% before it gets worse. I will let you know if I have any updates - so far, status quo.

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 8:11pm on September 18, 2012, bekind said…
Definitely let me know - always looking for options. I ,et someone at the support group who had AU and did acupuncture with success, so I might try that as well. Need to finish with this oral Pred regimen first tho. I sent you a (very long) message on the Pred. I hope it doesn't come to shaving, but if it does and you need support, let me know.
At 9:08pm on September 17, 2012, bekind said…
Hi starshine - how are you doing? I'm hanging in there - you asked about the oral pred - it's going ok. I went to the dr last week and she said there was some progress but I'm not seeing it yet. I was having some mild side effects to the pulse therapy pred - that I was actually ok dealing with them. But My doctor changed it to 50 mg four days a week to minimize the effects, and I don't have much confidence it will - worried I'm going to have the same effects for 4 days instead of one. I started today. So far, I still have the achy legs, and will see if I sleep tonight (not looking good so far). Sounded like you were trying some new approaches, howmismit working out? Hope you're having a good day.
 
 
 

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.

AlopeciaWorld.com: It's hair loss support at its best!

© 2019   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service