Alopecia World
Where acceptance is all there is!
Would you do an Alopecia medication study?
I signed up to participate in an alopecia study I thought why not what could it hurt ? I’ve already lost all my hair so there’s nothing to worry about there . But then I think what if my hair grows back? Then I think if it doesn’t help me maybe it will help someone else someone young.Alopecia is devastating for me as an adult I can’t imagine having it as a child or a teenager.But now I’m kind of having second thoughts. I’m kind of worried about the medication I’d be putting into my body .They say there are no bad side affects but who really knows. Would you do it if you had the chance?
Comment
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Comment by Veronica (Renata) on January 27, 2021 at 11:10pm
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Hi yes I would like to participate in the trial.
Email me the details.
thank you
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Comment by RenéeJK on January 27, 2021 at 11:05pm
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I might be interested...I have been registered with the website through a study for Anderson Cancer Center at the University of Minnesota in Minneapolis, where I went to give a scalp sample and blood tests right after I lost all my hair to AU in 2008. I've rarely been informed of any studies being done, and the few that were, were located on either coast or down in Texas, where Anderson's main site is. You had to live at the study sites for at least 6 weeks while they were going on, and I've never been able to do that. But now, hearing about some of the side effects, I just don't know if I would. Worrying about Covid has been enough for me the past year!
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Comment by Elizabeth W on January 27, 2021 at 11:05pm
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Can drugs reverse scarring alopecia?
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Comment by Spuddy on January 27, 2021 at 10:55pm
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You poor thing.
Sometimes it is just best we all go through life with all that we are dealt with
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Comment by Jade on January 27, 2021 at 10:38pm
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Hi, I just left the CTP-543 study which was the ruxolitinib jak inhibitor drug. I was in the study for 2 years. But i decided to stop because although my labs looked fine except for increasing my cholesterol and platelets, i did have a few severe infections (not your typical conjunctivitis or herpes) that persisted. It did help me grow all my hair back everywhere (i had none). But it wasn't worth having those infections and now the new problems im facing as a result of being on the drug. When I decided to stop, the withdrawals were terrible, full blown eczema everywhere - including my face, its been 4 months since being off the medication and i still have huge red blotches on my face and several spots all over my body and now my hair is coming out again. So I entered the study with no hair but smooth clear skin, but now i may be back at square one with no hair and with this new problem facial/body eczema. Altering your immune system is not a light matter. And the worse of it is, the study isn't going to attribute these adverse withdrawal symptoms to the drug. If i knew i would lose my face with blotches everywhere, and that i'd have to stay on the drug forever (without knowing the true cost of what this means), I probably wouldn't have chosen to take it.
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Comment by H on January 27, 2021 at 10:22pm
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One thing to consider is that the drugs are immunosuppressant which could be a concern for anyone who is exposed to covid regularly. You are also not allowed to be pregnant while taking this drug. All that said I would do it again. Basically zero side effects for me, I had some mild GI upset while starting the drug but it was very mild and hasn't occurred since. Beyond that I was told there is a slightly increased risk of blood cancers from taking this drug.
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Hello, I would be interested
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You can also find trials here
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Go to https://www.clinicaltrials.gov
Search for a trial for alopecia near you...i was 'totalis' as well and have suffered for around 20 years.
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Comment by tim s. on January 27, 2021 at 10:02pm
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How do you sign up ?
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