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? 

Views: 2032

Comment by Jade on January 27, 2021 at 10:38pm

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.  

Comment by Spuddy on January 27, 2021 at 10:55pm

You poor thing.

Sometimes it is just best we all go through life with all that we are dealt with 

Comment by Elizabeth W on January 27, 2021 at 11:05pm

Can drugs reverse scarring alopecia?  

Comment by RenéeJK on January 27, 2021 at 11:05pm

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!

Comment by Veronica (Renata) on January 27, 2021 at 11:10pm

Hi yes I would like to participate in the trial.

Email me the details. 

thank you

Comment by Jim In Cali on January 27, 2021 at 11:23pm

I signed up going in 2 weeks. Check Pfizer Alopecia study.

Comment by Cheryl, Co-founder on January 27, 2021 at 11:30pm

I would be afraid of the side-effect.  Known that there is no real cure for alopecia yet.  I would not want to end the study back at square one with the new side effects.  When I first lost my hair almost 30 years ago now, I tried Rogaine and every time I picked it up and read about "heart palpitations, it worried me.  To the point that I stopped and just decided I would let nature take its course one way or another.  I never really grew back the hair, but I did become ok without it.

Comment by ButterflyV on January 28, 2021 at 12:13am

Hi, 

I would like to know more and consider participating.

Comment by Jade on January 28, 2021 at 12:44am

I am just hopeful with new genome biotechnology like crispr, prime editing etc that they'll finally find a cure. Because alopecia is a genetic disease but the main difficulty is that it involves multiple genes, whereas technology as of right now is focused on monogenetic orders (one gene diseases like sickle cell). But eventually, once they solve for these monogenetic diseases, they should be able to figure out ours by targeting the right combination of genes and solve our disease at its root. 

Because right now what we have are pharmaceutical companies testing these potent immune altering drugs (jak inhibitors) that come with serious risks and they expect us to be on them for life for them to work. These drugs don't fix the problem but suppress or "inhibit" an aspect of our immune system, but its just not inhibiting the immune system that attacks the hair follicles, it inhibits systemically the whole body which is not good. 

We need to ask our doctors to advocate on our behalf so that the money goes toward finding a cure by looking at our genes/root cause of the disease, instead of allocating money toward immune altering drugs that puts us at risk for more problems or other diseases.  

Comment by Palacewags on January 28, 2021 at 1:38am

I would be interested. Especially for eyebrow treatment 

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