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Comment by Minter on January 13, 2019 at 9:26am

Halfbakedwho, good luck with your CBD search when you arrive back here - I only picked this brand as it is sold in my local pharmacy, so it was easier for me to do that then actually having to make a decision and choose one of the hundreds of brands of  different CBD's available online!  I'm surprised CBD isn't available over there even on Amazon as this is made from hemp not marijuana.  & yes, your post's are the best! :-D

Comment by Lu on January 13, 2019 at 8:25am

Hi Plf,

I thought the doc at Sinclair Dermatology was excellent. She was thorough, empathetic & explained the diagnosis & treatment &, without me asking, said a transplant is possible but they wait for a minimum 6 months of treatment before considering it (so much better than the doc I saw in Camberwell 18 months ago who gave me an incorrect diagnosis, prescribed rogaine & told me to wear a wig). I told her I was trying to follow an autoimmune diet - she said there’s no research to support its helping but to not apply SPF face creams near my hairline. 

I only had to wait 3 weeks for an appointment (better than 3 months to get into the Sydney Skin Hospital) which was fabulous as I just wanted to start any treatment ASAP. 

You’re so right about Sinclair being at the fore front .. Prof does so much research into alopecia that if anyone’s going to know the latest theories about this horrible condition it’ll be him & his staff. 

I’ve only had 1 appointment but I’d highly recommend them. 

Comment by Halfbakedwho on January 13, 2019 at 4:42am

Hi everyone,

Thank you Minter for loving my posts ; ), helpful in my continuous need for narcissistic re-affirmation! Kid you not. 

When I go back to the States I'll be looking into the products you all mention. There doesn't seem to be any CBD oil available here - surprising considering how much wine is on the shelves in my corner market, but apparently, these two things don't cognitively fit together here. 

My "new thing" symptom-wise seems to be swollen red bumps on the top of my head, a bit like a pimple, but not. If I push on them they hurt. It's not that troublesome, just another weird thing. I still put the Clobetasol on and it feels like it calms things down a bit, but I'm curious about other options. I should also be taking a mild antibiotic every day but I forget to do it - and when I do it makes me nauseous.  

If people are actually taking Finasteride - does it seem to help you? Have you noticed side effects? Do the injections help, and how often do you get them - these weren't even offered to me as an option! Not that I'm pining for injections, but local injections seem less malicious than the Finasteride which - who the hell knows what it's doing to your organs... yes I'm paranoid too... and I'm sure Finasteride won't help me with that...

Bon dimanche everyone, I love Sundays. 

Comment by Plf on January 13, 2019 at 12:42am

Hi Lu, glad you have had success with Sinclair dermatology, obviously they are on the fore front of treatment, for FFA, i did not realize it was possible to have a scalp transplant.  When is went to a melb dermatology clinic, i felt that they glossed over the condition and although willing to give me a cocktail of drugs, did not give me any info regarding them.  Hope you don't mind asking did it take long to get an appointment, and did you think they were thorough?  Good luck with your treatment plan, always good to hear some positive news.

Comment by Minter on January 11, 2019 at 8:49am

This is the brand I am using,  Ananda Spectrum Salve 125 for $23.99.  I got it about 6 weeks ago and still have a bit under half left in the tin as a little goes a long way!  I used it on my hands the first day and very soon I noticed a difference in the pain level- yes, it is still there, but in no way as intense and much more bearable.  

The difference in my itchy skin on my forearms is really noticeable, I would literally scratch and scratch drawing blood at times as it was that bad and now, as soon as I feel the itchy/tingly feeling I apply the salve and poof, no more itchiness. Though the word 'itchy' makes it sound so mild, it is a deep down feeling of something almost gnawing at my skin from the inside, an awful feeling that I never really could get relief from and the more I scratched the worse it gets, why this is- have no idea, but I'm guessing it has something to do with this stupid FFA. 

Anyway, I will get the oil as well to use topically one of these days- mainly at night.  I really like the salve as it is not "messy"  and I can use it throughout the day as needed when out and about or whatever- but the oil I could use at home and overnight and it will help moisturize too.  

Comment by Tessa on January 11, 2019 at 4:48am

Lu,

I'm in NSW and am on the exact same medications, having just come off Plaquenil and swapped finasteride for dutasteride. It must be the Australian way!

Have noticed more hair dropping since Plaquenil, however, so not sure about this yet.

Comment by AnnieMay on January 10, 2019 at 9:45pm

Dianna- do you use oil or a salve? do you have a specific one I should try?

Comment by Dianna on January 10, 2019 at 9:40pm

AnneMay - definitely use CBD. It has been very helpful for me.

Comment by AnnieMay on January 10, 2019 at 9:37pm

Oh illustr8r. .I'm feeling the same things right now and it's awful. My forehead feels sooo tight, my eyebrows itch and my scalp is tingly. My hair is dry and straw like, but then really fine and "fluffy" on the ends? and now that I have a lot of overall thinning my part is growing.

Jules. . I have that strange scalp sensation too and it's terrible. It's a struggle everyday to try and forget about this awful disease. It's so much more than losing some hair and I hate it.

Minter. .I think I might try a CBD salve. I have to try something.

Comment by Lu on January 10, 2019 at 7:32pm

For everyone in Victoria, Australia ( or even interstate), I have just had an appointment at Sinclair Dermatology & it was so encouraging! They’re starting me on a combination of  dutasteride/Spironolactone/ minoxidil & will consider hair transplant after 6 months of treatment  ... glimmer of hope!!

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