Anyone Here Lied About Their Age Out Of Embarassment?

[FootyStar]

Hey @FootyStar, you're the one with alopecia areata right? So has all your hair fallen out at this point?

Out of curiosity, do you rock the dome most places you go? Where a hat? What about fake eyebrows/eyelashes and such? Is that a route you'd go down?

Yeah 100% of my hair has fallen out and I pretty much "rock the dome" all the time.

In the past I tried wearing some fake eyebrows but it felt a bit odd and they tend to come off after a while (didn't try eyelashes). Instead I just decided to put on dark rimmed glasses and left it at that (they also help dust out of my eyes which is a plus). I also only wear a hat outside to protect myself from the sun, but never inside.

I'm thinking of having another go at the fake brows (and possibly a hair piece) as I'm sick of being stuck with the one look all the time.

 

[Exodus2011]

yea that sounds cool footy. i think people would be more understanding of you wearing a piece since its alopecia areata is far more rare. ofc it would still be a big decision and potentially very embarassing

 

[FootyStar]

yea that sounds cool footy. i think people would be more understanding of you wearing a piece since its alopecia areata is far more rare. ofc it would still be a big decision and potentially very embarassing

Thanks Exodus for the support. Yeah the potential embarassment is mainly what holds me back from diving into wearing hair. I think I'll take the plunge eventually though.

 

[Dench57]

Thanks Exodus for the support. Yeah the potential embarassment is mainly what holds me back from diving into wearing hair. I think I'll take the plunge eventually though.

Have you tried the immunomodulators/immunosuppressants Tofacitinib, Cyclosporine, Methotrexate etc? How forthcoming are doctors with your condition in terms of trying new treatments?

 

[FootyStar]

Have you tried the immunomodulators/immunosuppressants Tofacitinib, Cyclosporine, Methotrexate etc? How forthcoming are doctors with your condition in terms of trying new treatments?

Not yet and the dermatologists I have seen weren't inclined to put me on any treatments as they didn't think they would have much of an effect on universalis-level alopecia areata.

However I have yet to see a hair specialising dermatologist who I am seeing next month. Hopefully they will be more willing to give me some sort of treatment like those you have suggested.

I'll try anything at this point. :\

 

[Dench57]

Not yet and the dermatologists I have seen weren't inclined to put me on any treatments as they didn't think they would have much of an effect on universalis-level alopecia areata.

However I have yet to see a hair specialising dermatologist who I am seeing next month. Hopefully they will be more willing to give me some sort of treatment like those you have suggested.

I'll try anything at this point. :\

I've had a lot of experience with dermatologists and they're mostly useless unfortunately. Usually unwilling to prescribe anything off-label, especially as the drugs that work best for AA/AU are pretty nasty immunosuppressants.

I'm not an expert, I assumed universalis/totalis was the same mechanism as areata, but more extreme and affecting more of the body? So what works for areata should work for the others? Although I have read it is more resistant to treatment. There are a fair few treatment options for the condition though as I'm sure you're aware so if you're willing to try them it's a case of trial and error. Also the difficulty of actually getting the drugs. A doctor might be more willing to prescribe you something such as methotrexate if you can back up the efficacy with studies. Sulfasalazine, Methotrexate, even Cyclosporine or Mycophenolate can all be bought from online pharmacies if you're desperate. Lot of options e.g. here is 2 interesting studies (don't have full text but you might be able to find) of patients with totalis and universalis using Ezetimibe and Simvastatin combo which are both widely used and well tolerated: study 1, study 2.

Tofa/Ruxo definitely look like the closest thing to a cure for alopecia though. Looks like it will pass trials and you should be able to get it prescribed in a few years but until then I doubt anyone will prescribe it. Good to know there is something really promising on the horizon though.

 

[FootyStar]

I've had a lot of experience with dermatologists and they're mostly useless unfortunately. Usually unwilling to prescribe anything off-label, especially as the drugs that work best for AA/AU are pretty nasty immunosuppressants.

I'm not an expert, I assumed universalis/totalis was the same mechanism as areata, but more extreme and affecting more of the body? So what works for areata should work for the others? Although I have read it is more resistant to treatment. There are a fair few treatment options for the condition though as I'm sure you're aware so if you're willing to try them it's a case of trial and error. Also the difficulty of actually getting the drugs. A doctor might be more willing to prescribe you something such as methotrexate if you can back up the efficacy with studies. Sulfasalazine, Methotrexate, even Cyclosporine or Mycophenolate can all be bought from online pharmacies if you're desperate. Lot of options e.g. here is 2 interesting studies (don't have full text but you might be able to find) of patients with totalis and universalis using Ezetimibe and Simvastatin combo which are both widely used and well tolerated: study 1, study 2.

Tofa/Ruxo definitely look like the closest thing to a cure for alopecia though. Looks like it will pass trials and you should be able to get it prescribed in a few years but until then I doubt anyone will prescribe it. Good to know there is something really promising on the horizon though.

Thanks very much for the information on the immunosuppressants and immunomodulators. Hopefully I can convince at least one doctor to try one of them on me.

Yeah Tofacitnib and Ruxolitnib are definitely the most exciting upcoming treatments for AA. Many of the people with alopecia areata on other alopecia forums who have managed to get their hands on Xeljanz (tofacitnib) have had positive results with it. However they are struggling to keep up with the drug's high costs and purchasing requirements (having to travel internationally to buy it, finding a place with the genuine product, etc).

The sooner such treatments pass their trials the better I say.