Merry
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  • Madison, In
  • United States
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Merry's Discussions

Inspiring photos of progress

Started this discussion. Last reply by sadele Sep 15, 2015. 6 Replies

I have been very inspired by the photos of people on xeljanz who are regrowing their hair. Some of these people have not had hair for years, maybe even decades. Through these photos, I have seen that…Continue

Xeljanz: When should I worry that it won't work for me?

Started this discussion. Last reply by Merry Apr 29, 2015. 11 Replies

  I started using Xeljanz on March 12. I have been lucky in that my insurance is paying for it, but I'm beginning to worry that it won't work for me. I have seen some exciting photos of others'…Continue

Hopeful after a visit to Cleveland Clinic

Started this discussion. Last reply by LJBMD Feb 11. 7 Replies

My reasons for writing this are to share my experience and give others hope and encouragement. I have not felt this hopeful for years, but I think there are reasons to hope now. I have had AU for…Continue

Cholesterol drug, Vytorin, used for alopecia

Started Oct 29, 2014 0 Replies

My doctor has prescribed Vytorin for my alopecia. We have tried many other medications. Cyclosporine works to cause regrowth, but I always have to stop using it because of the side effects on my…Continue

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Latest Activity

LJBMD replied to Merry's discussion Hopeful after a visit to Cleveland Clinic
"No, I can’t imagine it. My 15 yo daughter has been suffering with AA since 12/27/18 and continues to loose a lot of hair; she has lost about 70% or more. We are panicked. What was Dr. Bergfeld like? Did anything help you? "
Feb 11
SabineTawni replied to Merry's discussion Hopeful after a visit to Cleveland Clinic
"Don't you just love the "it's only hair" comment?  Can you imagine saying to someone with psoriasis, eczema, vitiligo, "It's only skin."  Idiots!"
Feb 11
LJBMD replied to Merry's discussion Hopeful after a visit to Cleveland Clinic
"Hi - I am just reading this post now as we are new to AA. May I ask how things went for you since 2015?"
Feb 10
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"This disease is heartbreaking! I am a slow responder and require a high dose to see any regrowth. After 3 YEARS on Xel I was almost ready to ditch the wig. I had full brows and long, thick lashes, and my hair was still thin, but not terrible. Then,…"
Jan 7
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"NYGuy,  I had no response on 10mg and increased to 20mg. It took 3 full months before I began to see growth, so hang in there. You might still see results. Good luck."
Jan 7
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi, Everyone! I love seeing the success stories and photos on here. I am not in a good place right now and need this inspiration. I have been on Xeljanz since March of 2015. I started to see results after my doctor increased my dose to 20mg per day…"
Oct 26, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"That's wonderful! Congratulations! "
Oct 20, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi, Shad!  I haven't tried Prednisone yet, but I might ask when I see my doc next month. I have used steriod injections, Clobetasol, and minoxidil all along. I also take Allegra every night. I feel like prednisone might help me because…"
Sep 7, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Kevin, I get steriod injections in my scalp every 6-8 weeks and I use minoxidil every day. I also use Clobetasol 5 times per week. Fortunately, my blood was retested and came back in the normal range this time. My glucose was slightly elevated (pre…"
Sep 7, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Gatesm, My mail in pharmacy just signed me up for the copay card. They didn't ask me anything about income or any other prerequisites. That pharmacy is Acredo. Good Luck my friend!"
Sep 7, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you for your answer, Kevin! I feel a bit better now. My mail pharmacy called this evening to arrange delivery of my medicine at the same dosage as before. My doctor has not contacted me yet, but she must not be worried as she would not renew…"
Aug 28, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi, everybody! I am hoping someone will be able to address my concern.I am AU. I have been on xeljanz since March of 2015. I am a slow responder. I have all my lashes and brows back. I have full coverage on my scalp but my hair is so fine, white and…"
Aug 28, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Solutions, I had no hair when I first saw Dr. Bergfeld. I had already been seeing other doctors for a few years and had tried many other things. The previous doctor sent me to her specifically because she knew that Dr. Bergfeld was on the cutting…"
Mar 13, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Kathy, Squaric Acid works similarly to DCPC. It causes irritation much like poison ivy which draws the immune system away from the hair follicle. I was on it at one point. It didnt work for me, but it does for some people. Good luck! I hope you find…"
Mar 12, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"i actually see Dr. Bergfeld. I'm surprised she hasn't tried xeljanz for you. It's especially surprising since you asked about xeljanz. Good luck!"
Mar 12, 2018
Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks for the tip, Return_life. Has the 60mg worked for you?"
Mar 10, 2018

Profile Information

Relationship Status:
Single
About Me:
I am a 53 year old teacher who developed AU after losing my husband of 30 years to suicide.
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 3:35pm on November 7, 2013, LeslieAnn Butler said…

Hello and welcome!

I'm sorry about your husband. How are you today?  I have AU, too.

Leslie Ann

At 11:21pm on August 29, 2013, Bumblebeee said…

Merry,

Thank you so much for replying and letting me know how things are going with the Orencia. It's great to hear that you're seeing improvement! It also gives me some hope. I went to NY in July to sign up for the AA Registry and I spoke with the investigators there - they sounded pretty optimistic about Orencia. They also said that they'll be starting a trial for a promising new topical.

I am so sorry to read about your struggles. My thoughts are prayers are with you on this journey and I wish us both the best in our quest. Please let me know how you do with the Orencia. Best of luck to you too!

 
 
 

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