Hello to all alopecia sufferers, 

I want to describe my case to see if anyone else has had the same experience.

I started losing my eyebrow hair and some of the hair around my hairline, so I went to my Internal Medicine physician who referred me to a Dermatologist.

At the first visit, the Dermatologist diagnosed me with Frontal Fibrosing Alopecia.  Then he asked if I was taking Hydrochlorothiazide or Microzide (Brand name)

Unfortunately, I had started that medication (25 mg once a day) in January by my doctor to see if it would help "prevent" kidney stones. 

He told me I was the 3rd patient to be diagnosed with FFA and all of us had been taking Hydrochlorothiazide.

I can't imagine how many other patients have been diagnosed with FFA that were taking this medication. 

I am very upset that FFA was not listed as a possible side effect of Hydrochlorothiazide.

I would appreciate any feedback.

Thank you!

Terri

Views: 2768

Replies to This Discussion

Another update on HCTZ

http://www.ehealthme.com/ds/hydrochlorothiazide/lichen+planus

Review: could Hydrochlorothiazide cause Lichen planus?

On Oct, 28, 2014: 59,982 people reported to have side effects when taking Hydrochlorothiazide. Among them, 26 people (0.04%) have Lichen Planus.

Interesting information about this medication. I have been on triamterene and hydrochlorothiazide combination (brand name Maxzide) for high blood pressure for many years. One Dr I had seen many years ago for hair loss suggested that this medication could cause hair loss. I went off of it for awhile but didn't make a difference. This was an endocrinologist I saw I think.

Once you lose your hair on your scalp, it will not grow back.  FFA causes scarring of the hair follicles and the hair is lost forever.  The only options are to try hair implants, which may or may not work and to have a plastic surgeon cut and move your scalp forward - sort of like a face lift.

I'm going to opt for the face lift procedure....

Hi Terri.  Just joined this group.  Have been looking for others who suffer from hair loss.  I was diagnosed with post menopausal frontal scaring alopecia over a year ago.  I had noticed some different hair pattern in my hair before but thought it was due to age or ?  Never thought it was permanent hair loss.  Went to a dermatologist for something else and she discovered it.  I'm 65, soon to be 66.  Hair loss on legs and underarms had happened long before.  Eye-brows are thin, but pencil can take care of that.  Have never taken the medication you are speaking of.  Before this, the only thing I took was Crestor.  I've seen three dermatologist and spoke to a doctor in San Francisco.  They all say this is fairly new and not sure how to treat it or if anything will actually work.  I'm currently taking Avodart 0.5 mg.  How that works is beyond me.   I also took antibiotics for some time but no

longer.  Am thinking of starting again.  One doctor had me take prednisone but the side effects were too much.  I'm using the topical, Fluocinonide once or twice a week.  Two of the dermatologist differ on that medication.  Does any of this sound familiar?

Hi Sharon, I'm so sorry you are having frontal scarring alopecia too.

My dermatologist prescribed Betamethasone Dipropionate Lotion USP, 0.05%

Twice a day, I put this lotion on my hairline where the hair loss is occurring and I also put a little on my eyebrows.

I haven't experienced a lot of additional hair loss since I've been using this lotion and my eyebrows are growing back!

Maybe you can try a bottle to see if it helps you?

Good Luck... 

I'm certain it might be an auto immune response to HTZ. My mom got FFA - not confirmed but i can look at her hair loss and see that, she also lost body hair. This happened in her late 50's-60's, maybe ~10 years of taking HTZ, so I guess she assumed it was AGA. I now am diagnosed with this after ~10 years of HTZ - terrible genes, i take care of myself but inherited high blood pressure at 21, my brothers smoke and drink and have perfectly fine BP! Now I'm losing my damn hair! I actually might be able to bear with this if it affected the back of the head, a lot easier to hide/blend, but a jacked hairline sucks.

Anyway, I'm stopping the HTZ and will try using dandelion for a diuretic, I have no clue if that will help with a slower progression (or ideally get to the elusive burn out...does this actually burn out? I don't see anyone who says it stopped) but I figure that's one less thing to worry about exacerbating the condition. Are there any diuretics that aren't linked to lichen planus? I feel bad putting my BP on the back burner for my hair, but I also take lisinopril, time to see if it will work on its own.

Spironolactone is an old drug used for BP and is a diuretic.  I was first prescribed it many years ago for the off-label use for the treatment of cystic acne.  When I continued to complain of hairloss the dosage was increased for the treatment of hairloss.  After years of seeing a specialist in hairloss, and getting blown off when asking if I should have a biopsy, I finally had one and was diagnosed with FFA when seen by a resident and complaining of the loss of frontal hair.

I'm still in the denial phase and (patiently) waiting for my follow-up visit at the end of the month to learn of treatment options.   My Spiro was refilled because "it doesn't help this type of hairloss" and my hair is falling at anxiety increasing levels.  I can no longer hide the extreme thinning...

Hi sadandunsure, Thank you for your post. After I stopped HTZ, my dermatologist prescribed Betamethasone Dipropionate 0.05% lotion which I massage on my hairline and eyebrows.  My eyebrow hair has slowly started to grow back.

Has the dandelion helped you?

Thanks for sharing...I haven't taken the medication though before. But am on an antidepressant called ciprelex. Have been for a few years.

Terri - I have read through your posts and am curious if you had any plastic surgery as you had suggested -  mine to I believe was medication induced after a shingles/pneumonia/flu shots and then a few weeks later an osteoporosis injectable and I had been only on osteoporosis meds probably for 8 years as well - I went into massive overdrive and why it picks our hairline who knows.  I still have a small area about three inches long and maybe three hairs deep that I can see but does nothing - no more hairloss since my initial shed four years ago and have really managed without the drugs since I felt the other drugs had gotten me here.  I have had a facelift 10 years ago for family jowls and would like to touch it up but really do not want to flare anything up again.  I also take lisonpril 5 mg for blood pressure but only for the last 1 1/2 years - there has been no change since I started that med.  Thanks in advance for any info

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service