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Comment by Chi_Loss on June 29, 2020 at 1:09pm

Hi! I just found this group and can relate to all comments here. i have been on alopecia world for  a while, but the stubborness of the ophiasis pattern (AA to AT) has always been pointed out to me by my derms. i was on xeljanz, but became non responsive after a year and then i cut off all my hair. i found a drug trial from concert phamaceuticals in August 2018 and have great results. I know not everything works for everybody but i have 95% of my hair back. it is less dense in the ophiasis areas, but is definitely growing hair in areas that had not grown in years. I have had alopecia on and off for about 22 years. I am sending this note to give you guys hope that they are coming very close to a treatment for this condition. I am now on this drug until it comes to market. Stay encouraged!

Comment by TG on June 25, 2020 at 8:20am

Hi 5DH

 

Thanks for your reply! Yeah I see that Alopecia World is not very active and also I can’t find any similar forum anywhere else! I think there is a Facebook group but not like a forum where people can discuss by topic / post. I like forum style because you can keep up with the post by the specific topic!

 

Thanks for your story. I hope mine stays on ohiasis or go back to patches… But I think we don’t really hear “recovery story” in this forum because then people simply leave forum and get on with their other life!

 

You said you were stressed before you lost critical mass of hair, were you stressed because of the hair loss or were there other known stress cause?

 

To me, it looks like I have diffusion when I get visibly stressed not ohiasis. Everyone is different, I think.

 

And diffusion is not happening now that I don’t have visible or known stress at the moment! I think my ohiasis advanced due to the hormone injection for IVF 3 months ago. If that is the case, I hope to get some hair back... 

 

Started laser treatment and minoxidil… I don’t really have much hope in treatment just like most of us here gave up on treatment after years of trying. I think I will just give one more try and if it doesn’t do anything then will again, stop treatment and switch to “do nothing, see how it goes” method.

 

 

Comment by TG on June 25, 2020 at 8:07am

Hi RossG

 

Thanks for your reply! Your word "The disease calls the shots".., I can't agree more now that I have ohiasis since 2011. 

I am hoping..., that this stops here and will not advance further.

Is ohiasis is just the precursor to universalis, or ohiasis likely stays as ohiasis??

 

I had a pin-point-stress related hair loss in 2009 by diffusing but all of my hair came back without any treatment after I got rid of the stressors. Alopecia started in 2014 with patches, after my life became stress free! 

 

I was wondering about starting a post if anyone here still believes our alopecia somehow was caused / triggered (and staying as is) because of the stress - now that you mentioned it!

 

I am sure all of us here got get annoyed when someone who knows nothing about hair loss tells that it's stress related. Same for me too but now I am round the clock again started thinking, maybe it is deeply rooted to my mentality.

 

My stress-related hair loss has been the diffusion not ohiasis but maybe it's time to review that self analysis.

 

This time, my ohiasis advanced a month ago and I think it is directly related to the hormone injections for IVF I did 3 months ago.

 

I am just hoping to get back to the level of ohiasis I had last year and don't have a hope up so high as to "be healed" completely. It may or may not happen with or without treatment like you said..

Yeah, all those "snake oil sellers" .. don't worry, I am not a believer. :)

 

I think we can all relate to this too.

Comment by 5DH on June 25, 2020 at 7:22am

Hey TG - Alopecia World was never that active generally and this subgroup was basically never active, so that’s probably why. I do wish there was a more active forum for folks.

My life basically changed after getting AA in 2006, developing into ophiasis pattern around 2009-10, I think my life got so stressful I lost critical mass of hair and shaved my head. Strategic combing no longer worked, and the topical application of a JAK inhibitor drug trial I was on failed, so there was no alternative and no hope. Shaved it all off Dec 2018 and not a moment too soon as over the next year I lost all of the hair in my scale (no roots, less to shave). That was honestly ideal for me since I didn’t have roots showing and I no longer have to shave every day.  My only fear now is that my hair will start growing back in patches. Stay gone!!

Comment by RossG on June 24, 2020 at 8:41pm

hello TG! your msg popped up on my email. i think ppl typically get on here when this disease first hits, but eventually it becomes much less of a focus of our lives & they drop off. So, alopecia...

In short, you get used to it. You soldier on. The bruised ego and pain heal. And you gain a new perspective on life. Easier for some than others, but probably hard at times for all of us. As for my update... Spoiler: not encouraging. All my hair abandoned me for the most part. BUT if i’ve learned one thing, it’s that everyone’s journey is different. Dont waste your money on vitamins or pills (unless you have the money, desire, and ability to get one of the hardcore inhibitors like xeljanz. these work for many, apparently, but only while you consistently take them and sometimes you have to change to a similar but different chemical for it to continue working). And i havent seen strong evidence that fasting or accupuncture or the like works either. The disease calls the shots. It may go away and your hair comes back or it may take all the hair on your body, then randomly decide to give you just your eyebrows back (my journey). Note to self: dont get too attached to those eyebrows; they could verrrrry easily be gone next month.

there’s no cause and no cure. and it pretty much sucks. keeping it real. but again, you may not need a “cure,” bc it may just go away. if it doesnt, you will not only survive, you’ll thrive. you will gain wisdom you wouldnt have otherwise and you will exude more love.

imho, it’s actually caused by a buildup of stressors that you may not have even felt much at the time(s).

friend me and msg me if you want encouragement, or want practical advice on things like microblading, or just to hear from a member of your new family. : )

Comment by TG on June 24, 2020 at 7:53pm

Hi anyone still out here? Looks like the last post was in 2017. :)

Wonder if any of you could update what is going on with your ohiasis now? Cheers.

(My introduction and photos are on my profile FYR)

Comment by RossG on March 13, 2017 at 3:10pm

First of all, i hear you on the "discouraged." As much as we want and need to stay positive, sometimes the freakin mirror or some bad communication can wreck us! We have to constantly remind ourselves we are not our hair (or lack thereof). Our character and personality are not made of hair. Any other person who doesnt see this is not very wise. Unfortunately, most kids your age arent exactly brimming with wisdom, are they? I guess this is why you want a solution asap. I totally wish i could report that my daily visualization and meditation have restored mine--but the best i can say is that the bald spots above my ophiasis line have mostly filled in. However, below the line is still shiny and bald. What i'm TRYING to do is to focus on the positive (the spots filling in) and not dwell on the bad part (no regrowth in bottom half of head). So try to stay locked in on how the loss seems to be slowing down bc that is relatively awesome! Accupuncture, huh? I have been wanting to try that and you have officially inspired me to go for it! Anything specific i should know for when i set it up?

Comment by Ragan Toppan on March 13, 2017 at 11:44am

I have had Alopecia Ophiasis now for about a year and it has really gone down hill. I have had little to no regrowth and I keep hearing that I will go completely bald. I'm so discouraged. I'm 15 and at the height of my insecurities. I'm currently using 3 methods of treatment with only more hairloss. I would recommend ACCUPUNCTURE to anyone who is also struggling because I have noticed that it is reducing the hairloss. I'm also on a topical application and a pill. The wind is my enemy and I'm scared to take my hat off. Any suggestions or anything that would help? I NEED ADVICE PLEASE HELP

Comment by RossG on February 26, 2017 at 9:50pm

Thanks bananarama! I needed to know it's possible. I'm gonna make an effort at this visualiztion stuff but for it to work apparently i must truly believe. So if i dont have all my hair back by say, tomorrow morning, then i'll assume it's bullshit. Hehe jk I guess i better give it more time than that. Thx again for real.

Comment by Lexi on February 26, 2017 at 9:14pm

Bananarama, your TODAY picture looks much improved.  Congrats on that.  Almost normal by far.  Wish I could say the same, but sadly not.  

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