Donna
  • Female
  • Seattle, WA
  • United States
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Donna's Discussions

Using rogaine

Started Oct 30, 2017 0 Replies

With frontal fibrosing Alopecia I am only using the rogaine on the temples & hair line area. Not all over. What are other doing

FFA how much hair loss will happen

Started this discussion. Last reply by chris for hair Nov 13, 2017. 1 Reply

How much hair loss is average for FFA? I’m so worried I’m going to lose half my head of hair. I saw a woman that was almost bald except for the back half of her head.

I’ve read some that Tramadol can cause hair loss

Started this discussion. Last reply by Return_life Oct 10, 2017. 3 Replies

I have been taking tramadol for several years. 2x/day Does anyone experience hair loss that they think may be caused by it? I don’t know if it is or is t with my FFA

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Latest Activity

Donna commented on Celia UK's group Frontal Fibrosing Alopecia
"Is anyone one using closbestatol right now? I copied & pasted the paragraph below which I found,  I’m a bit concerned that I will have been on this medication for 8 months by the time the doctor wants to see me again in May.…"
Feb 8
Donna commented on Celia UK's group Frontal Fibrosing Alopecia
"AnnieMay & Jess.  I have started using coconut oil as my facial moisturiser.  A little under my foundation also & it gives a dewy look. You can add lavender essential oil or rosemary is very good for skin.  I’ve been…"
Feb 2
Donna commented on Celia UK's group Frontal Fibrosing Alopecia
"Plf I was wondering where you live that you need a prescription for minioxidil. That’s Rogaine right?  We buy it over the counter 5% in the states. Plus all the side effects you say you’ve read about. I haven’t read anything…"
Jan 30
Donna replied to akb's discussion Plaquenil? in the group Frontal Fibrosing Alopecia
"I am on clobestatol (corticosteroid). I started in October 1X every day for six weeks. Then went back to see Dr. & she said the inflammation was gone & to use 3x/wk until I see her again in 6 month.  I haven’t had any side effects…"
Jan 18
illustr8r replied to Donna's discussion FFA & hormone replacement in the group Frontal Fibrosing Alopecia
"I think getting on HRT helped slow my hair loss and shedding. Before I started HRT I was miserable with hot flashes and night sweats. My hair was falling out in front of my eyes at that time. I begged for HRT and once they took effect my symptoms…"
Jan 16
Donna added a discussion to the group Frontal Fibrosing Alopecia
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FFA & hormone replacement

i was diagnosed this past October.  I was looking at old pictures this weekend & I noticed the last hair I see around my ears was 2015. This seems to coincide with when I started using Premarin creme. I wonder if that is the cause.  Any thoughts?See More
Jan 16
Donna commented on Celia UK's group Frontal Fibrosing Alopecia
"I see so many comments of people that have itchy, crawling sensations on their scalp. I’ve had none of that.   Is that a common symptom? Will I get that at some point? I was diagnosed in October. I don’t k ow how long it’s…"
Jan 14
Donna commented on Celia UK's group Frontal Fibrosing Alopecia
"AnnieMay, I was wondering if you are using any thing with retinol in it on your face. A couple years ago, all of a sudden I became allergic to a creme I was applying to my face.  ROC I was itchy all around my eyes and brows & red.   It…"
Dec 18, 2017
Halfbakedwho liked Donna's discussion Clobestatol
Dec 4, 2017
Airam-FFA liked Donna's discussion Clobestatol
Dec 2, 2017
Donna added a discussion to the group Frontal Fibrosing Alopecia
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Clobestatol

Just got back from my visit to dermatologist. I have been on clobestaol for 7 1/2 weeks & she said it has worked on stopping the inflammation. She was very happy with the outcome. So as far as I understand. No inflammation of hair follicles no more hair loss. I had not been putting it behind my ear where there is hair so that was still a little inflamed. She says to keep on using it now 3 times week instead of every day & come see her back in 6 months. I came in to see her early on she…See More
Nov 29, 2017
Donna commented on Celia UK's group Frontal Fibrosing Alopecia
"Thank you Annie May. I’m glad to have found this site also. Happy Thanksgiving to all."
Nov 23, 2017
Donna commented on Celia UK's group Frontal Fibrosing Alopecia
"Thank you so much @YummyMummy for all the knowledge you have shared. Sounds very hopeful.I have often wondered if the Premarin creme I started using could’ve triggered this disease. My hair seemed fine before I started using that. You say the…"
Nov 20, 2017
illustr8r left a comment for Donna
"Hi Donna, This is the thread where the essential oils were listed: http://www.alopeciaworld.com/group/frontal-fibrosing-alopecia/forum/topics/essential-oils It was posted by "April" Here is the recipe: 4 tsp. grapeseed oil + 1/2 tsp jojoba…"
Nov 14, 2017
Donna commented on Celia UK's group Frontal Fibrosing Alopecia
"Yes I have overall thinning AnnieMay It’s best not to wash your hair every day. I’ve also started using dry shampoos. They give a lot of body & fluff. I like Batiste it’s only about $5-6.00 Walmart. then I’ve tried…"
Nov 14, 2017
chris for hair replied to Donna's discussion FFA how much hair loss will happen
"I don't think this question can be answered. The condition varies so much and giving an average does not mean that you will be the average person with FFA. I know this is not the answer you want, but it is true for many chronic conditions.…"
Nov 13, 2017

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Other type of alopecia
Are you age 18 or older?
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At 7:56pm on November 14, 2017, illustr8r said…

Hi Donna,

This is the thread where the essential oils were listed:

http://www.alopeciaworld.com/group/frontal-fibrosing-alopecia/forum/topics/essential-oils

It was posted by "April"

Here is the recipe:

4 tsp. grapeseed oil + 1/2 tsp jojoba oil

2 drops cedarwood EO

2 drops thyme EO

3 drops lavender EO

3 drops rosemary oil

Here is  a link to the study

http://www.ncbi.nlm.nih.gov/pubmed/9828867

I have a friend who has always had thin hair. She hasn't been diagnosed with anything- just unlucky in the hair dept. She started using essential oils and had some success. She used something call Ylang Ylang along with lavender and cedarwood. I'll try this concoction since it was a scientific study. I have been using cod liver oil and it's soothed my itchy scalp. Dr. says to stop with Clobetasol for awhile...*sigh* It's always something isn't it! :)

 
 
 

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