"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…"
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SabineTawni
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- 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 0 Likes
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 0 Likes
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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"Thanks for posting the photos, Jim. You look amazing!"
"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…"
"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…"
"Kevin, Forgot to add, please keep us updated on anything else you hear about this new product."
"Good information, Kevin. Thanks for sharing it with us."
"Good information, Kevin. Thanks for sharing it with us."
"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…"
"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.…"
"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…"
"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,…"
"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…"
"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…"
"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…"
"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…"
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…"
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)
- 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,
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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