SabineTawni
  • Female
  • Boalsburg, PA
  • United States
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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 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
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
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
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
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
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
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
SabineTawni commented on Cheryl, Co-founder's video
Thumbnail

Dr. Gary Linkov who has alopecia is not conviced that Jada has alopecia areata

"I agree, Kenya, and I am not trying to be disrespectful towards you or anyone else with hair loss, regardless of the reason.  I just get really tired of insurance companies and society in general refusing to accept alopecia areata as a REAL…"
Jan 17
SabineTawni commented on Cheryl, Co-founder's video
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Dr. Gary Linkov who has alopecia is not conviced that Jada has alopecia areata

"KKG, I am inclined to agree with you that Jada does not have Alopecia Areata.  I don't mean to be unkind, but sometimes celebrities have a tendency to overdramatize and/or try to jump on the bandwagon when some new disorder (which was…"
Jan 17
SabineTawni replied to Cheryl, Co-founder's discussion Do you wear a wig to blend in?
""Insecure"??  I don't see you as being "insecure" at all, Dreamscometrue.  You are simply trying to live your life (like the rest of us) in the best manner possible.  Why do some people with the autoimmune…"
Dec 7, 2022
SabineTawni replied to Cheryl, Co-founder's discussion Do you wear a wig to blend in?
"I would never dream of going out in public without a wig!  I had hair for 65 years and that is what I am used to having.  Besides, I have no desire to advertise my medical problems to the world.  However, I don't have any problem…"
Dec 7, 2022
Nikita Rempel replied to SabineTawni's discussion Olumiant coverage
"FastPay Casino https://fstpycasino.com is one of the top online casinos that offer a fast, reliable and convenient payment system. No more waiting in long lines at the casino! Simply make your payment through FastPay and you're good to go."
Dec 2, 2022
SabineTawni commented on Cheryl, Co-founder's blog post 5 Things You Should Never Say to Someone With Alopecia
"Hearing the remark over and over again, "It's only hair."  This remark always comes from people with a full, thick head of hair.  I also have a sneaking suspicion that they are trying to make THEMSELVES feel better, not make…"
Nov 29, 2022
SabineTawni left a comment for Picdubois
"Yes, I have the nail issues as well.  Such a frustrating condition!  The worse thing about the finger nail issues is that the small pits and ridge occur UNDER the nail as well, so it is hard to keep my nails clean.  Again, another…"
Nov 29, 2022
Picdubois left a comment for SabineTawni
"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."
Nov 28, 2022
SabineTawni replied to Erika's discussion Freedom wig pictures/info
"I've always been suspicious of Freedom Wigs.  I don't think any wig is worth $4,000.  It seems as though Freedom Wigs simply try to take advantage of those of us with an autoimmune disease."
Nov 21, 2022

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

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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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