Replies to This Discussion

Permalink Reply by Donna on November 11, 2017 at 11:02pm

Hi Erika, I was just diagnosed about a month ago. I’m 60 years old. Prior to going to the Dr. I started using Rogaine on my own. Minioxidil 2% twice a day. Then the foam 5% once a day. The Dr. said that was good I had started doing that & to continue. She prescribed a topical solution of clobestatol twice a day for a week then once a day. Which I’m still using. I will go back on the 28th for a follow up. I think it may have slowed the hair loss down but I’m not sure. I’m not even sure if the Rogaine is working but I think so. I’m only putting it around the frontal hairline areas.

Permalink Reply by Lynn on November 12, 2017 at 12:38am

Erica,
I am sorry to hear that you are having to go down this path. We have all been where you are now, with lots of questions and hope for some answers.
I was diagnosed 2 years ago.
I am currently using men's strength rogaine daily on my front hairline, I take 10,000 mg of biotin daily and I am taking prescribed finasteride daily as well. I also use a generic form of Latisse on my eyebrows and eyelashes daily. My hair loss has slowed significantly, although not entirely. In times of stress I still experience increased hair loss, so I do my best to keep my stress level down through prayer, time for myself doing the things I enjoy and trying to eliminate negativity in my life.
I am 48 years old.
Wishing you all the best with your treatment plan. This group is a wealth of information and a place to come when you have concerns & questions. I encourage you to read through the topics in this group, as you will gain much information here.
Lynn

Permalink Reply by Nancy79 on November 12, 2017 at 1:26am

I am 65 & diagnosed 4 years ago.

If you are done having children get on Dutasteride 0.5mg daily. It has a 50-60 % chance of arresting the disease where it is at with little to no side effects for women. But you cannot take it if you are pregnant.  I pay cash for generic dutasteride 0.5mg at Costco for $10 per month.

I got on it 4 years ago after an exhaustive search of research literature. Derms wanted to put me on the checklist of drugs that I read were found to be not effective and had terrible side effects. My GP wrote the script. I still take it daily today.

It immediately arrested my disease and the follicles that were affected have slowed the hair loss so much I don't even watch it anymore. I have told my story on this blog a few times over the years but I have only seen people mention they are using Dutasteride in the past year. As far as I am concerned this should be the drug of first choice.

Ask your doc about it. There is no time to waste.

Permalink Reply by Nancy79 on November 12, 2017 at 10:51am

I have noticed no change in libido. I think this side effect relates more to men than women because they can become impotent. It may be contraindicated for you with the other things you have going on.

Research literature show that the shots have little to no effect. Minimal positive effect was only noticed in the very initial stages of the disease. Most women seek help long after this stage from what I have read in these blogs.

What the shots do provide is lumps of the drug in your scalp that slowly dissolve over time. The drug can travel down the forehead. It does thin the skin and exposes the blue blood vessels so much that women have stated they are permanently disfigured. Also you can be left with dents in the scalp. It is usually tried right after topical clobetasol.

I avoided all of these ineffective treatments and got on the most effective drug immediately. Talk to your doc to see if it is possible for you to take it.

I have a lot more detailed entries on the "Just diagnosed" thread if you want to check there for info.

Permalink Reply by Kojack on February 8, 2021 at 1:36pm

Hi Nancy

Are you continuing to take dutasteride?

Permalink Reply by illustr8r on November 12, 2017 at 3:58am

1) how long ago have you been diagnosed? 
It’ll be a year in February but I’ve had it long before then-likely about 7-8 years. Noticed hair loss with the onset of peri menopause and undiagnosed kidney problems. Lost my eyebrows about 5 years ago.
2) what are you on?
I am transitioning off the AIP diet-too high in protein for my kidneys. I have Clobetasol but my family dr suggested I stop for awhile. It’s thinned the skin along my temples so my blue veins are showing through. My scalp was peeling too. I thought it might be from the FFA but since I’ve stopped the Clobetasol it’s cleared up. I think it’s good for serious flares but not on a continuous basis. I started using cod liver oil a few days a week and that has helped with mild itches here and there. I was offered Plaquenil but I refused to take it because of the side effects to your eyes-which increase with renal problems.If my kidney numbers improve after I go back to eating “normal” I’d like to try Doxycycline or Pioglitazone. I use Latisse on my eyelashes and brows.
3) do you see any improvement? If I get stressed my hair suffers. I cut it short in a pixie. My stylist seems to think I’m holding steady...a little more loss on my left side maybe but I can still hide it so far.
4) how old are you? I’m 53.

Permalink Reply by akb on November 12, 2017 at 10:01am

Hi illustr8r,

I went on AIP in large part because of your testimony! (It's been around a month now.) How are you eating now? 

 

thanks.

Permalink Reply by illustr8r on November 12, 2017 at 11:14am

The AIP diet really did help me-no more itches and I felt really good. I started to add a few things back into my diet about 3 weeks ago. I have to have labs every 6 months to check my kidneys and last week I did that and my numbers weren’t good. My Neph thinks the AIP diet is too high in protein-the sweet potatoes and all the greens plus all the meats. Admittedly I may have had more bacon and steak than I should have! So, I am going back to the lean meats, no power greens, less eggs ( I reintroduced those and ate them every day). I’m still staying away from bread but am having rice. My kidneys are more important than my hair so I have to stop the AIP diet. Lesson learned.

Permalink Reply by illustr8r on November 12, 2017 at 4:11pm

@akb I’d probably still be on the AIP diet but my dr said even though it’s great clean food-it’s just too high in protein for my situation. All the good stuff like avocados, bananas, plantains, sweet potatoes and greens like spinach and kale are good stuff-but not if you essentially have one sort of functioning kidney at 40% capacity. Too much of a good thing! I thought since I was eliminating dairy ( also bad for kidneys) and grains (whole wheat, also bad) that eating more of the good stuff would counter balance the protein issue. Nope! She said I could still eat gluten free if I wanted.

I just wanted to clarify that it’s not the diet that was bad. It’s my kidneys which is a special circumstance. :)

Permalink Reply by akb on November 12, 2017 at 4:15pm

thanks! I've been on AIP for about a month and am still trying to figure it out; it feels good, mostly, although I feel a little bit weird about the quantity of meat I am eating/frequency with which I'm eating it. 

I'd love to hear how your scalp feels on your more kidney-friendly diet. 

Permalink Reply by MJ on November 12, 2017 at 8:31am

Hi Erika, sorry for your diagnosis. I am about four years in. Took hydroxychloraquine for a couple of years along with clobetasol and men’s rogaine foam at night. Stopped everything except rogaine on my eyebrows at night. Can’t use finastride because of prior breast cancer. Made decision to go off come what may with the hair to not put my body through the possible long term effects of drugs and topicals. It took awhile to get to that point. My loss is still consealable but I often feel like I look like the “before” picture in a makeover. But my focus is eating well and taking care of my body and stlyig myself to present the best overall appearance I can. I am 54 and want to stay healthy for my kids. I will likely need a hair piece on a year or so. Luckily you found this amazing group! I don’t know what I would have done without them, especially early on. Best wishes to you. MJ

Permalink Reply by Mattsmate on November 12, 2017 at 11:58am

I am 47. I was diagnosed in April. My loss started with my eyebrows 3 ½ gears ago. I was diagnosed hypothyroid later that year which I thought attributed to the hypothyroidism. But after starting treatment it didn’t get better.
I started with rogaine foam right away and my derm added a topical steroid (momesoate frosted) soon after.
I didn’t start any oral meds until end of July. I am on planquenil and use a compounded dutasteride on my scalp. Due to blood clots right around 3 years ago, I cannot take finesteride and even dutasteride is contraindicated for oral use.

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