Alopecia World
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AA and the Pandemic
So this may be a topic of some controversy but I am hoping to get some feedback from my fellow AAs. I first was diagnosed with AA when I was 7, which very quickly turned into AU within the same year. By my teenage years it started to grow back in very small and patchy areas but I am happy to say it grew fully back by the time I was 17. Now that I am 54 (sigh) my hair is falling out again. I have dealt with small patches here and there throughout the time I had hair but it has come back with a vengeance now. With that said, I have stopped putting anything in my body (vitamins, mineral, supplements, etc) in hopes my system will settle down and start to grow my hair again and it is staring to work. So here’s the part that some people may not like… I have decided not to get vaccinated for the corona virus because I have no idea how my body will react to it and neither do the doctors as the C-19 is so new. My hair is just starting to come back again in bits and pieces and I would hate to get the vaccine and have it start to fall out again. Any thoughts?
Replies to This Discussion
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Permalink Reply by Donna Alfieri on
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Well, I look at it this way- Hair loss or dead. Now it becomes a no - brainer. Hair loss is better than dead. My daughter works in the medical field, I’ve heard many sad sad stories of people who have caught and died from covid-19. My daughter for the first time had to help place bodies in bags and take them to the refrigerated cars; were the bodies waited for the mortuaries to come and get them. My daughter caught covid from a patient early on before hospital workers were wearing better masks. Since getting better she has lost some of her sense of taste and smell. She also lost copious amounts of hair while she was sick. I hope having more information helps you come to a more informed decision.
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Permalink Reply by John on
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I agree with Donna that hair loss shouldn't really effect your decision of whether or not to get the vaccine. But I take kind of an opposite stance. The vaccine could literally kill you. The last thing I'd be worried about when injecting a mystery substance that is being promoted by the government, media, and Healthcare establishment - all of whom are totally corrupt and have been blatantly lying about everything for at least the last decade - would be my hair.
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Permalink Reply by dreamscometrue on
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AMEN!! Remember how long it took for the government to admit what they did in the Tuskegee Experiment? My gut tells me this 'gene therapy' injection is the same thing in the 21st century.
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Permalink Reply by Versida on
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Donna,
I absolutely agree...I've had AA for almost three decades and I wouldn't think twice about placing hair loss over my life.
I'm glad your daughter survived, and do hope she's taking care of her mental health...she went through a great deal.
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Permalink Reply by Joan on
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How selfish are you. This vaccine has nothing to do with hair. Have you seen anyone the virus and the dreadful death they have, you not getting vaccinated means you can easily pass it on to others
stress causes your hair to fall out. So stop stressing about the virus. Who cares if you have no hair. Only you. I haven’t had any fir many years and smile when I think of the money I have saved
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Wanting hair is not "selfish", Joan. Like it or not, we live in a society that judges you by your appearance. "...only you care if you have no hair"? Is that not enough? No, stress does not cause alopecia areata. It might not help it, but it does not cause it. Just for the record, I am not anti-vaccine. I have had both doses, a booster, and will continue to get more boosters if recommended. But I fully support other people's right to do what they feel is best for themselves.
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Permalink Reply by Maz on
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I had the Pfizer vaccine (1st and 2nd jabs) and have had not lost any more hair. I understand you thinking about this but the pandemic is bigger than our own personal worries. Educate yourself but try to stick with the science. There is so much false information out there and most of it is utter rubbish. I have tended towards the alternative and natural viewpoint in my lifetime (not the far-right or religious viewpoint) but I have also studied human biology. I have respect for both sides but no respect for those who close their minds to anything that comes from the other side. There need not be a divide. They complement each other. So, you are 54. That means that you are at considerable risk if you get Covid. OK, there hasn't been a long-term study to see if we may lose hair because of the vaccine. My guess (and we can only guess) is that, if it was going to happen, it would happen soon after being vaccinated. I have not seen any outcry about hair loss and, believe me, if that was a consequence of being vaccinated, the anti-vaxxers would be making a fuss about it. If they heard about one case they would broadcast it far and wide. So, you can stress about it and risk more hair-loss or get vaccinated and feel so much safer. I felt a bit weary for about 3 days after my second jab (actually I was pleased to know that my immune system was functioning) but the realisation that I am now as protected from Covid as I can be has removed a stress that I didn't really recognise until it was gone. Good luck.
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Permalink Reply by NicoleK on
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Hi! Our son, who is 16 has experienced AA for a little over 4 years now. My husband is a Surgeon and we too discussed whether to vaccinate. We chose to get his vaccination back in April and his 2nd in early May. He did not have any side affects at all. I agree that this is a personal decision and you must always do what feels best for you!
* Poorer countries with low vaccination rates are facing a surge in Covid cases and deaths due to the highly contagious Delta variant. We in the USA should count our blessings that we have almost limitless access to vaccines. We hear from people around the globe desperate to get a vaccine....while we all have them at our fingertips. Polio and Smallpox were NOT stopped by herd immunity. They were stopped by mass vaccinations. Viruses mutate. New cases are up 135% in the USA over the past 2 weeks (4X the global rate!) and new deaths are up 27% (More than triple the global rate). We have a solution in the palm of our hands. Ending COVID-19 is now 100% a choice. Unfortunately, We continue to get poor information and data from all sides.... forcing many to question both medial professional's and government motives. All so hard! My own parents are on opposing sides of this debate.
ON ANOTHER NOTE: My son's doctor has had him on Xeljanz for almost 2 years now. We had to fight really hard to get insurance to pay for it..and it took about 4 months of daily calls, arguing over prior authorizations, etc...but they finally approved it. He started taking 5mg twice a day. This was amazing at first and he had a full head of hair for months. Then his cycles started back up. We have noticed that once he has a flare up, if he gets an IM Kenalog shot it seems to calm back down and we hadve done steroid shots in the scalp at the same time. After about a 1.5 years and continual cycles, the doctor upped the dose to 10mg in am and 5mg at night. Insurance paid for 10mg once then denied the Xeljanz all together. Back to the fight... 3 months later, they re-approved the 5mg 2x. But by this time he was having major loss and we basically had to start over to get the meds back in his system. I had read on this blog once that Pfizer produced Xeljanz in Turkey...so I ordered a 3 month supply from ycdscc.com for around $2100. This isn't cheap....but the best deal I found. There is no way to know if this is real .5mg Xeljanz..but we are desperate. We have him taking 1 real tablet and 1 Turkish tablet in the am and then his real tablet at night. Did a Kenalog shot and found a great new dermatologist that started scalp injections again as well. Growth is looking good and we are hopeful! The new dermatologist who seems to really take an interest in Alopecia was headed to a conference last week and said she would have updates for us when we see her next week. She was very excited that a Pfizer competitor was launching a new JAK 2 inhibitor and that it was going to be coming out in the next month. The specialist that we travel to see is one of the doctors who does the drug trials for Pfizer and he says they too are coming out with a new JAK inhibitor that he feels will be the next breakthrough for Alopecia.... He said in the next year. So.. with all of that said... some hopeful news!
Lastly... I would love to know if anyone else has experience with Turkish Pfizer Xeljanz? Any ideas where one could get a pill tested for content? I appreciate all of the info and support offered here! Thank you all...
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hello I am French I have been under xeljanz since March 2018 at the beginning I was going to Turkey in Istanbul to buy the drug yes it is official there is a pfizer in Turkey and lots of people this provided it, at the end of the year we have discovered becon phamaceutical a pharmaceutical company from bangladesh, the tofacitinib box is a generic tofacinix watched several threads ago the 5mg box is 15 dollars, and the 11mg box is 30 dollars, I did it tested in 2018 in a French laboratory and it is original except that it is under dosed it is 4.2 mg, looked at my news feed and read, if you have no customs problem bought it in their company, there 'A lot of Americans have no customs problem, I'll let you watch the discussions type tofacinix in the discussion search bar,
he also sells baricitinib jak2
generic baricitinix.
if ever xeljanz is more effective on your son,
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This is great info! Thank you so much! I am excited to look into Tofacinix!
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Hi,
I am Sonea Damley . I stay in India,
My son who is now 25 has AU since three years. I have full faith in God that he will get his hair back. I am writing to u to tell u that last month he took his first dose of Covishield the vaccine that is administered in India. There were no side effects and he is ok. He was on lots of steroids for one year but since 2 years he is on Ayurvedic medicine which i am going to stop as i feel healing has to be done from within. I gave him celery juice for a month and now i give him wheat grass juice(which has all the nutrients ) also i have started turmeric milk to bring down the inflammation. I will keep you posted when he takes his second dose.
I have a lot to be grateful to God. People all over the world have serious diseases. I understand this is cosmetic and hence very obvious to people but then i tell him that those who dont value your inner beauty are not worth being your friends.
Wish You Good health. Stay Blessed.
Sonia Damley
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Thank you to everyone who took the time to respond with your thoughts and experiences. I should have started with the fact that I am not an anti vaxer but do have concerns of how the vaccine could affect my health while I am still in the process of treatment (DPCP & steroid injections). As I have dealt with all forms of Alopecia for most of my life, I understand that different things are triggers for different people. For me, it’s when I don’t treat my body as well as I should, which includes not eating “clean” (junk food) alcohol (which is inflammatory) and not dealing with stress well (keeping things inside). But most of all I feel hormones are my worst culprit as my hair started to grow back when I hit puberty and now that I am on the other side of puberty (menopause), it’s staring to fall out again. The specialists all disagree but it seems all too coincidental for hormones not to be part of the issue. I guess my concern over the vaccine is how it will interact with my treatment. I realize that I have a lot to be thankful for in my life, my beautiful family, my loving and supportive husband and most of all my health. I don’t take these things for granted and appreciate all that I have. However, just because Alopecia is not a life threatening disease, it doesn’t mean that it’s any less of a disease for mental health. I know it may come across a superficial given that bigger picture of the horrifying fact that millions of people are dying due to the pandemic. I understand that my decision to take a “wait and see” kind of approach my seem “selfish” but it is my decision. I wish everyone all the best with their AA/AT/AU journey.
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