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salis

28.08.2007, 16:45
 

Trish are you out there..........its salis (Accutane or Medications Induced Hair Loss)

Hi Trish
Its been a long time since ive come across you on this forum. Hope things are ok for you. Just wanted to check in with you Trish about how you were getting on with treatment. Would be great to hear from you
Salis


salis is located in [NA] and he is available to meet: NO

trish

01.09.2007, 18:28

@ salis

Update to Salis

Hi Salis,
Thanks for thinking of me. I'm a teacher, and school started two weeks ago. I haven't had time to get on the computer at home since.

I'm not sure if my hair loss has decreased. Sometimes, it looks like it. I'm seeing the endo next week, so I should know more about some lab results then. She thinks that my thyroid is causing some of the problem. I already have AGA, so I don't need anything else helping to increase the loss.

How are things going for you? I really want to hear from you.

Trish


trish is located in [NA] and he is available to meet: NO

salis

02.09.2007, 16:08

@ trish

Update to Salis

» Hi Salis,
» Thanks for thinking of me. I'm a teacher, and school started two weeks
» ago. I haven't had time to get on the computer at home since.
»
» I'm not sure if my hair loss has decreased. Sometimes, it looks like it.
» I'm seeing the endo next week, so I should know more about some lab results
» then. She thinks that my thyroid is causing some of the problem. I
» already have AGA, so I don't need anything else helping to increase the
» loss.
»
» How are things going for you? I really want to hear from you.
»
» Trish



Hi Trish
Sounds good that things havent got worse any way. At present lose 100-150 every day, hair just progressively thinning, despite being on androcur. Shedding did initially go down from 2-300 to 100 for a few months but then increased back up again. Reduced dose again. shedding subsided but not to a level that is good. Lost quite a bit of hair. Not sure what to do anymore was thinking of going on propecia. I've read quite a bit on avodart, a new drug which i've heard quite a few women have success on. More recently have also visited an endo who put me on progesterone cream for the last 10 days of my cycle based on 28 days. Have taken it june and july and in august had periods lasting for 4 days three times. Not sure whats going on. Would like to actually have a clearer picture one day. Saw a derm a few days ago. He said i could either try out alternative anti androgens or go for a biopsy first to get confirmation of a diagnosis and then revisit options. Im tired, scared most of the time of my future in every possible way because of this nightmare and pretty depressed. Still able to go into work and smile though. I think work has been my life saver. It helps me forget.



Pasted summary from last update ........
Prior to going onto to it was shedding an average of 200 plus per day over a week. Was doing so for about 4 or 5 months previous to that. Started taking 12.5 mg CPA toward end of September. By the end of October there was a reduction to about 130 per day for the week. I then upped my dosage to 25 mg. The result was that the shedding continued to decrease and a month later it was down to an average of 100. On the third month i upped it to 50 mg. At the end of that month the average shed was about 120. Took second lot of 50mg at the end of that month and by the end the average increased to 140. Took my third dose of 50mg last month and my shed has increased drastically again over the last month. Today i shed 270, but that average over the week was 170 per day. I've drastically reduced it now again. Might stop for a while. From this data i would assume that it was working to bring the shed down on a certain dose, but once that was upped the shed increased. Unfortunately dont have any bloody results during this time to reflect any changes in levels of T, etc. I forgot to add that about 2 month ago whilst shedding was at its lowest and just about to increase, I was supplementing with 1.25 mg of estrogel. I stopped this a month later when the shedding increase as i wasnt too sure about whether this effected shedding. Has anyone has any similiar experiences and could possibly shed more light on this. it all seems very trial and error. At the end of my wits. My hair just keeps getting worse. Please let me know if you have any further info


salis is located in [NA] and he is available to meet: NO

trish

02.09.2007, 20:52

@ salis

Update to Salis

Salis,

I've been going through this "fun" for 18 years. I really thought that I'd be bald by now. The good news is that I'm not, so there is hope for everyone. There are areas that have thinned, and I definitely have diffuse loss. The ups and downs of hair loss are only understood by someone whose been there and is still living it. I,too, had a loss of over 200-250 a day when it started. It began when I started into perimenopause, so estrogen decrease was the culprit. Every derm said Rogaine was the only thing they knew of.

While you may not feel that the medication you're using now is beneficial, there may be another that will work better. There's a book by Spencer Kobren named The Truth About Women's Hair Loss. It names the treatments, and I think that it would give you valuable information.

I hope that this has helped in some way. I truly know what you're going through, and I'm thinking of you.

Trish


trish is located in [NA] and he is available to meet: NO

salis

03.09.2007, 16:16

@ trish

Update to Salis

» Salis,
»
» I've been going through this "fun" for 18 years. I really thought that
» I'd be bald by now. The good news is that I'm not, so there is hope for
» everyone. There are areas that have thinned, and I definitely have
» diffuse loss. The ups and downs of hair loss are only understood by
» someone whose been there and is still living it. I,too, had a loss of
» over 200-250 a day when it started. It began when I started into
» perimenopause, so estrogen decrease was the culprit. Every derm said
» Rogaine was the only thing they knew of.
»
» While you may not feel that the medication you're using now is beneficial,
» there may be another that will work better. There's a book by Spencer
» Kobren named The Truth About Women's Hair Loss. It names the treatments,
» and I think that it would give you valuable information.
»
» I hope that this has helped in some way. I truly know what you're going
» through, and I'm thinking of you.
»
» Trish

Hi Trish
thankyou so much for your feedback that makes me feel a bit better, its just that you never know because mine could go differently from yours. Did you start off with really thick hair. Mine never really was. Feel like i look like a drowned hairless rat most of the time. Yes the CPA im not sure of. It decreased the shed initially and then the shed went mad for about 4-5 months. Trying to start up again on a lower dose and see how it goes. Going for a biopsy in two weeks to get confirmation of diagnosis (although I already really know). Can i ask Trish how old you were when you refer to going into perimonopause and did you have other symptoms others than hair loss ? Also what if any medications have you tried and found beneficial.
very much appreciated trish, i wish you well. Its nice to hear from someone with so much experience (even though its hideous and we'd very much prefer not to have it).
Salis


salis is located in [NA] and he is available to meet: NO

trish

03.09.2007, 23:10

@ salis

Update to Salis

Hi Salis,

Hideous is a great word for this.

I noticed the hair loss right after I turned forty. The dr. told me to go back three months because that's when it started. So, the effect of perimenopause showed up when I was 39 1/2. I've always had whacky periods, some acne after age 35(I took Accutane at 45. Bad news-it increased my hair loss, but I had acne free skin.), and all that good stuff. My hormones were crazy for a long time. I do remember the day that I first saw my frontal scalp. I couldn't believe it. It took 4 derms until one of them told me that it was probably AGA and to take Rogaine. Everyone else blamed stress, scalp irritation, etc.

I had tons of hair at the beginning. That's why I'm not bald yet. It's so diffuse that after I shampoo, I can see way too much of my scalp. Ugh!

I've used Rogaine, Proscar(Research shows that it doesn't help postmenopausal women, and I fit into that group.), and Spiro (now on it). I'll see the endo in two days, and I'll talk to her about meds after I get the latest lab results.

Trish


trish is located in [NA] and he is available to meet: NO

salis

04.09.2007, 13:47

@ trish

Update to Salis

» Hi Salis,
»
» Hideous is a great word for this.
»
» I noticed the hair loss right after I turned forty. The dr. told me to go
» back three months because that's when it started. So, the effect of
» perimenopause showed up when I was 39 1/2. I've always had whacky
» periods, some acne after age 35(I took Accutane at 45. Bad news-it
» increased my hair loss, but I had acne free skin.), and all that good
» stuff. My hormones were crazy for a long time. I do remember the day
» that I first saw my frontal scalp. I couldn't believe it. It took 4 derms
» until one of them told me that it was probably AGA and to take Rogaine.
» Everyone else blamed stress, scalp irritation, etc.
»
» I had tons of hair at the beginning. That's why I'm not bald yet. It's
» so diffuse that after I shampoo, I can see way too much of my scalp. Ugh!
»
»
» I've used Rogaine, Proscar(Research shows that it doesn't help
» postmenopausal women, and I fit into that group.), and Spiro (now on it).
» I'll see the endo in two days, and I'll talk to her about meds after I get
» the latest lab results.
»
» Trish

Hi Trish, that interesting about the proscar. How long have you been on the Spiro for and is it helping any i.e. any reduced shedding, thicker hair noticeable yet ? Have you had any dread shed on it and how much are you taking ? See, i've never had loads of thick hair. It was pretty thin but there was still a lot of it. Used to love going to the hairdressers and getting a cut. The idea now gives me nightmares. How did you find rogaine ? have you stopped using it and if so did you experience any shedding. Sorry about all the questions and thanks for your responses Trish, very much appreciated. You said your hormones were all over the place, did they try and balance them out with estrogen / progesterone and if so did that help any?


salis is located in [NA] and he is available to meet: NO

trish

04.09.2007, 23:30

@ salis

Update to Salis

Salis,

I've had so many dread sheds over the years, I've stopped counting. When they start, I feel a sense of panic. It seems like I get lulled into thinking that my hair loss has died down, and-whamo- along comes another shed.

I started Spiro almost a year ago. The hair loss after two weeks was non-existent. It was like it was before it started. At seven months, the shedding started. After three months of it, I went to my endo, and she said that it was strange that it started up again. She looked at my labs and said that I might have subclinical hyperthyroidism. She wanted to wait three more months and recheck the lab work. I'll see her tomorrow. About three days ago, I noticed that the shedding had decreased. Also, my internist called today and wants to see me about the lab results(She received them, too.). Now I want to know if anything showed up. I started with 100 mg/day and now take 150 mg/day. It was 200 per day, but I started seeing side effects and reduced it.

I've used Rogaine forever. I'm afraid to stop it because I don't want to find out that it was working and then lose the hair. I really like the foam. I didn't like the liquid. It was greasy and discolored my hair which is a very dark brown.

I'll let you know what the doctor says about the Spiro. I'm going to ask her about Avodart, too. Maybe what I learn will help you.

Trish


trish is located in [NA] and he is available to meet: NO

salis

05.09.2007, 16:18

@ trish

Update to Salis

» Salis,
»
» I've had so many dread sheds over the years, I've stopped counting. When
» they start, I feel a sense of panic. It seems like I get lulled into
» thinking that my hair loss has died down, and-whamo- along comes another
» shed.
»
» I started Spiro almost a year ago. The hair loss after two weeks was
» non-existent. It was like it was before it started. At seven months, the
» shedding started. After three months of it, I went to my endo, and she
» said that it was strange that it started up again. She looked at my labs
» and said that I might have subclinical hyperthyroidism. She wanted to
» wait three more months and recheck the lab work. I'll see her tomorrow.
» About three days ago, I noticed that the shedding had decreased. Also, my
» internist called today and wants to see me about the lab results(She
» received them, too.). Now I want to know if anything showed up. I
» started with 100 mg/day and now take 150 mg/day. It was 200 per day, but
» I started seeing side effects and reduced it.
»
» I've used Rogaine forever. I'm afraid to stop it because I don't want to
» find out that it was working and then lose the hair. I really like the
» foam. I didn't like the liquid. It was greasy and discolored my hair
» which is a very dark brown.
»
» I'll let you know what the doctor says about the Spiro. I'm going to ask
» her about Avodart, too. Maybe what I learn will help you.
»
» Trish

thanks so much for that Trish. I hope they find something in a way so that they can do something about it and that it helps you recover your hair. I hope this spiro works out for you, further. Im very curious about avodart. I like the idea of those drugs that work at the follicle level. I think the androcur messes too much with the hormonal side i.e. estrogen, which is not a good thing. Ive heard quite a few success stories about that drug. its supposed to be pretty strong. If you were going to start it, i would start at quite a low dose and then raise slowly just in case. keep in touch trish, hope it all grows back. Thats i wish for all of us. so much misery and lost time.
big hug
salis


salis is located in [NA] and he is available to meet: NO

trish

07.09.2007, 00:49

@ salis

Update to Salis

Salis,

My internist doesn't like Avodart and told me not to take it at my appintment today. Oh well! She told me to add biotin and give it three months. She also likes propecia/proscar. She's seen it work for other women.

The endo told me to keep at 150 mg. of Spiro daily due to my low blood pressure. The thyroid is back to normal.

Thanks for your e-mail. It's always great to hear from you. Let me know how things are going for you.

Trish


trish is located in [NA] and he is available to meet: NO

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