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Comment by pauliegirl on April 26, 2018 at 1:07pm

Jess- I have no side effects from the accutane. 20mg daily (because the study used this dose), taken with food sorta high in fat (accutane is simply a big hit of Vit A, and since A is a fat-soluble vitamin, absorbs better with fat on board). Some practitioners still subscribe to the higher-is-better dosing of accutane for acne and patients are left horribly dried out. My derm has been prescribing it since the 80's and said that is a shame since it can be very effective at lower doses. As well, he said the "link" to depression is questionable. Very very rarely sees liver involvement. Hope that is helpful! The iPledge stuff is unfortunately mandatory and a huge pain for pre-meno women. 

The big question: has it helped? Soooo hard to say as I have had some loss at the front/top while on it but have recently seen more periods of low/no inflammation. Between meds and now the AIP diet I have so many variables at play I can't say. The Poland study noted the ~75% success rate of halting progression AFTER the accutane was taken for a year and then stopped. I am on month 5. 

I may have had some mild facial papules at the temples; no sign of that anymore. That one study, though with only 3 patients, showed excellent results on the accutane. 

In the medical profession, I am not suggesting unethical stuff, but can't your derm throw you a bone and diagnose with acne so ins will cover? Honestly, I want to invite insurance companies over to our homes to live with us for a couple days as we are dealing with this disease and they can then tell us why we can't have medicine that might help us covered! Otherwise, have you checked with Costco or Sams or GoodRx for the best price?

Comment by Christi Q. on April 26, 2018 at 11:51am

I have been consuming organic lemon juice for 3 years now.  I don't leave home without it.  I read somewhere recently that lemon is too acidic to consume and could cause problems for FFA .  What the heck!!  Has anyone else heard this?

Comment by BubbaLu on April 26, 2018 at 8:05am

Plf,

i am no expert.  I had two plugs taken for biopsy last week and get the stitch out tomorrow, results were positive.   I have a band of redness.  My dermatologist is giving me injections tomorrow to “calm down the inflammation and tell the autoimmune to leave your hair alone!”   I believe the redness occurs while it is killing the hair follicle.    After it is successful the hair falls out. After 6 weeks I go back for an exam to see how well the injections work.  I am lucky this was diagnosed early so I have not lost much hair yet and hopeful it can be put into remission.  

Comment by Plf on April 25, 2018 at 10:48pm

Maybe a odd question, I have had 2 identified flare ups on my scalp ..could be more that I just haven't noticed..is it only during the inflamed red times that you actually loose hair, or is it happening every day./?..

Comment by Halfbakedwho on April 25, 2018 at 6:02am

I don't have the sweating issue aside from the night-sweats of menopause. I don't have bumps on my face, though I have some acne right now (lovely at age 52!). Sometimes I get these weird floating numbness sensations - I swear I thought I was having a stroke - I looked it up - freaking menopause again...! 

I really hated Accutane - think I lasted a week on it. I felt all dry and strange. Apparently it's not good for people who have issues with depression, so I'll pass. I would rather have less hair and more sanity (though from my posts here you can assume that there's not much of that either). 

Comment by Jess on April 24, 2018 at 11:54pm

Pauliegirl- I have a couple questions about your Accutane use. What is your dosage? Are the side effects still manageable? Last time I asked, I think you said you weren't really having any.

Finally, and most importantly (to me : )), are you seeing any difference in your facial skin? I can't remember if you said you had the weird skin texture or not.

My doctor said he would prescribe it to address the very fine bumps all over my face, but because I'm pre-menopausal, there are a ton of hoops to jump through, including using two forms of birth control for a month before starting (one systemic and one barrier), getting a pregnancy test one month before starting and again directly before starting, and then getting a pregnancy test every month thereafter. I would also have to call in every month to report to the FDA that I am using two forms of birth control. All of this is part of the "I pledge" progam. I would also have to get blood tests to monitor my liver functioning for the first two months. All of this would be out of pocket because my insurance will cover nothing related to alopecia, even scaring alopecia. So between the tests and medication, I'm looking at least $300 a month.

I put it off for now and was prescribed some metrolotion to address rosacea and in hopes that it might help the fine bumps as well. I'm also debating on getting a photofacial (laser treatment) to see if that helps. The place my dermatologist referred me to costs about $1000, though. This disease ain't cheap, lol!

Comment by pauliegirl on April 24, 2018 at 9:20am

Interesting chatter about the sweating! I have always sweated a lot while working out ( I used to run 1-4 miles everyday; for the last year to two have ratcheted that down to 0.5-2 miles fast walk and floor/leg work) and now, with the freaking hot flashes. The hot flashes often cause sweating on trunk, arms even. Yuck. Am gonna ask functional med dr if he has any thoughts on balancing out meno-hormones.

Here is a weird question for you all: has anyone had sweat that actually changes the color of material in contact with it? i have ruined pillow cases and neck/chest areas of shirts with an almost bleaching effect of my sweat. Gross right? Hubby and I refer to it as my toxic sweat :/  I have often thought it was somehow related. I can remember it happening at least starting about 10 yrs ago. It seems like there could be a correlation, what with the theory that something has gone awry with our oil which messes with the follicles which causes hair loss. 

PS I am 5 months in on accutane. 4 months in on Actos. 6 weeks on the AIP diet (which, once you figure out how to cook and what to eat and various recipes, is actually not bad at all, and super duper healthy, too!). I can't say the loss has stopped but I am seeing less inflammation over the past 4 weeks or so. 

Carry on bravely, folks!

Comment by Minter on April 24, 2018 at 8:30am

@Halfbakedwho, I am still "gluing" my sides down- I asked my hairdresser to cut 2- 3 inch-ish "sideburns" to pull forward in front of my ears and use Got To Be Glued or just hairspray (I spray it on my fingers and then style) I also use a hair balm or a mix of all or some of the above- depends how I style my hair that day or what I'm going to be doing.  I have to say I love pulling my long sides forward, feels very stylish and 60-ish and Audrey Hepburn or Goldie Hawn like haha!

Oh and I also use a darker hair powder in front of my ears where the hair is so thin and all of this helps disguise what is really happening- it is all smoke and mirrors at this point! ;-D

Comment by Minter on April 24, 2018 at 8:22am

I am an excessive sweat-er too, but it has gotten slightly better since (I think, I hope) I might finally be out of menopause!

So will see how it goes this summer, though I am sure I will still be a dripping mess ;-/  Sometimes if I know it will be a sweaty-drippy day, I use Certain Dri roll-on deodorant along & inch or so into my hairline and I've also used 3B Face Saver (on Amazon) not  perfect solutions but it seems to help! 

Comment by Jules Australia on April 24, 2018 at 7:29am

I wonder if we have extra sweating due to loss of the fine vellus facial hair, especially around the hairline on forehead/temples area & eyebrows which possibly would have previously 'soaked up' the usual sweating we may have had before the hairloss associated with ffa; & perhaps the inflammation exacerbates involvement of sweat glands in some way....who knows, trying to unravel this/make sense aof it all, sometimes 'does my head in'.....I know there Re worse things, but the relentless, chronic, progressive,recalcitrant nature of the disease is what makes it so begrudgingly difficult & frustrating....Sorry for the rant, whinge....juzt letting off steam!! Thx for listening! !

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