SabineTawni
  • Female
  • Boalsburg, PA
  • United States
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SabineTawni's Groups

SabineTawni's Discussions

Olumiant coverage

Started this discussion. Last reply by Nikita Rempel Dec 2, 2022. 1 Reply

Does anyone know if Beacon Labs sells Olumiant (the new FDA-approved drug for severe alopecia)?  I am sure my insurance company will probably not cover it, saying it is "not medically necessary".…Continue

Xeljanz Question

Started this discussion. Last reply by Maris Feb 18, 2019. 5 Replies

I have a question about Xeljanz.  Is Xeljanz an immunosuppressant drug?  If so, isn't that dangerous?  How, if it is an immunosuppressant drug, is it any different than prednisone?  I really know…Continue

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Latest Activity

SabineTawni commented on Cheryl, Co-founder's video
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This has been one of my fears with treatments like Olumiant

"I agree that we have to. have realistic expectations with any of these new treatments. However, having realistic expectations is very difficult to do when Big Pharma wants over $5,000 a month for their new drug!! I would say THEY (Big Pharma) are…"
Feb 4
SabineTawni commented on Cheryl, Co-founder's blog post Your Personal Path to Embracing Self-Acceptance
"I agree that your definition of self-acceptance is right on target! You're right in saying it is not about reaching a "destination". It is about navigating the ups and downs of our condition. It is learning to make our autoimmune…"
Oct 25, 2023
SabineTawni replied to kross's discussion Alopecia Universalis Advice
"Thanks for posting the photos, Jim. You look amazing!"
Sep 29, 2023
SabineTawni replied to kross's discussion Alopecia Universalis Advice
"You state in your post that you were unable to stay on Olumiant because you could not afford it. Why are insurance companies refusing to pay for this? They pay for drugs for eczema, psoriasis, and other autoimmune disease, so why not this one? I…"
Sep 18, 2023
SabineTawni replied to kross's discussion Alopecia Universalis Advice
"You state in your post that you were unable to stay on Olumiant because you could not afford it. Why are insurance companies refusing to pay for this? They pay for drugs for eczema, psoriasis, and other autoimmune disease, so why not this one? I…"
Sep 18, 2023
SabineTawni replied to babashanti's discussion Olumiant and what to ask my doctor?
"Kevin, Forgot to add, please keep us updated on anything else you hear about this new product."
Jun 28, 2023
SabineTawni replied to babashanti's discussion Olumiant and what to ask my doctor?
"Good information, Kevin. Thanks for sharing it with us."
Jun 28, 2023
SabineTawni replied to babashanti's discussion Olumiant and what to ask my doctor?
"Good information, Kevin. Thanks for sharing it with us."
Jun 28, 2023
SabineTawni replied to babashanti's discussion Olumiant and what to ask my doctor?
"I am so sorry to hear this, Babahanti. You are an ex-smoker of 10 years? Good for you, but what does being a smoker in the past have to do with all this. Also age 55 is hardly old these days. However, I think at age 55, you are old enough to know…"
Jun 7, 2023
SabineTawni replied to Linda's discussion Xeljanz
"When you say "sky-high" cholesterol, can you tell me what that means in numbers (total cholesterol)?  I am just curious, as I have heard some people say Xeljanz has adversely affected their cholesterol, and others say it has not.…"
Apr 12, 2023
SabineTawni replied to Laura's discussion Lucky to have Alopecia and not cancer ??
"So true, Tracie.  Frankly, I am tired of looking in the mirror and seeing a stranger or, I should say, a blank.  I accept the way I look and go about living my life as best I can.  But I will never ever pretend that my AU is no big…"
Mar 18, 2023
SabineTawni replied to Laura's discussion Lucky to have Alopecia and not cancer ??
"I don't think "poor me" either, Poppy.  But I also do not minimize my sadness at having AU either.  I am glad you are able to be so glib about your hair loss because most of us are not.  I have said many many times,…"
Mar 18, 2023
SabineTawni replied to Laura's discussion Lucky to have Alopecia and not cancer ??
"I think people who make that remark are quite thoughtless, actually.  Diseases, whether they be life-threatening (either to quantity of life or quality of life) are NOT a contest and should not be treated as such.  Of course, I am grateful…"
Mar 18, 2023
SabineTawni commented on Cheryl, Co-founder's blog post The Power of AlopeciaWorld.com: Finding Strength and Encouragement in Like-Minded Connections
"While this site can be very helpful to people, I do not come here that often.  Alopecia World is suppose to be a support group, but I sometimes find it to be more of a clique.  It is the same old people commenting and replying all the…"
Mar 13, 2023
SabineTawni replied to NicoleT's discussion Xeljanz from India
"My question exactly.  Doctors, bless their hearts, often think they more than they do.  The fact is I seriously doubt that Starshine's doctor knows exactly what caused her cancer.  Is it true that baracitinib is less effective…"
Mar 8, 2023
SabineTawni replied to babashanti's discussion Olumiant and what to ask my doctor?
"I really don't understand the excuses (e.g., it's cosmetic and it's not life-threatening).  You could argue that eczema and psoriasis are cosmetic, and they are not life-threatening either, but insurance companies still pay for…"
Feb 15, 2023

Profile Information

Relationship Status:
Married
About Me:
67-year-old female with alopecia universalis which began as alopecia areata at age 24. Never needed treatment as it only involved one spot every 5 or 6 years, and the hair always grew back by itself. Then about 7 years ago, a spot formed, then more and more spots, eventually leading to alopecia universalis. After 3 years of universalis and no treatment during those 3 years, the hair is slowly coming back by itself. Very unpredictable disease!
Do you have alopecia?
Alopecia universalis
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (2 comments)

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At 11:34pm on November 28, 2022, Picdubois said…

Hi Tawni - thanks for your tears and runny nose - I feel less alone. Any other side effects, other than the hair loss that binds us here? I had fingernail issues. Indentations formed across the middle of my nail.

At 4:14pm on April 7, 2022, Picdubois said…

I am actually in Maryland but my post office is in Delaware. I wanted to ask you about tearing and runny nose due to no hair in these areas. I experience and wonder if you did as well

 
 
 

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