I FINALLY got it!!! Flutamide, but too little time?

[GlitterStar]

So this may be better suited for the alternative meds section but it seems as though most of the discussions on the subject have been in here.

Anyway....I finally got a script for flutamide. And a pretty high dose....500 mgs. I didn't expect her to go that high with it. But she will only let me use it for 3 months. She says that if it doesn't do what it's going to do by then then it's not going to work at all and there's no point in risking liver damage. I can sort of understand her concept of thinking and I'd be willing to do that if she said 6 months, or 8 months or a year because from the studies 6 months is the minimum time that proves it's usefulness. So while I'm excited and hopeful....what's going to really suck is if nothing happens in 3 months and then it gets taken away from me =( She even admitted that it would take probably 6 months on it to regrow hair....so WHY she made a 3 month limit, I dunno.

So has anyone seen results that soon? I personally don't really think that it's gonna happen in just 3 months. I've been suffering the severest forms of hair loss that PCOS can bring for nearly 15 years so if there's any hope for me left, it's more than likely going to take more than 3 months....but I guess I'll try and remain optimistic...miracles do happen or so I've heard.

[etuc]

I have never tried it, I have had liver damage from a different med so I shy away from anything with potential for liver problems.

If I were in your shoes I would show her the studies and tell her that if you don't see results in 3 months and you are not having any liver problems that you want to continue trying it for another 3 months.

Best of luck to you!

[GlitterStar]

Thanks. I was thinking that same thing. I have some studies already printed out and I'll keep digging around for more to take with me that show it may not be enough time. She's starting me out at liver testing every 2 weeks for the first month and then once a month after so hopefully it won't be a problem.

[Hezzer]

But she will only let me use it for 3 months. She says that if it doesn't do what it's going to do by then then it's not going to work at all and there's no point in risking liver damage.

All the studies I've read suggested eight months to see results. I found many studies through this site and was prepared to present to my doctor if she refused to prescribe flutamide. Interestingly, she spend almost 15 minutes during our appointment doing her own research online while I watched and waited and she finally agreed to prescribe. I'm the first woman in the whole practice (3 doctors and 2 NPs) to receive it.

Even if it's working, you might not actually *see* the results in just three months. What you might want to do is present all your findings to her and tell her you want to take it for eight months to a year. Agree to do monthly liver tests to ensure that no damage is being done. Tell her if you don't see results between 6 to 12 months, then you'll discontinue. As long as no damage is being done to your liver, I don't see how she could consider that an unreasonable request.

So has anyone seen results that soon?

I started *thinking* that I was seeing results within 6 weeks or so, but I didn't want to say anything to anyone for fear I was just getting my hopes up. (I've done that before.)

I hadn't able to wear my hair back in a couple of years because the temples had gotten so bald, but then they filled in with all these whispy hairs. My part, which was incredibly wide, started to seem narrower. And the bald spot didn't seem as noticeable.

Shedding decreased. The ever present tingly, tickly feeling (the sign of DHT attacking follicles) that I had on my scalp went away. And my scalp pimples stopped. It used to be that I had anywhere from 4 to 10 pimples on my scalp at any given time. I think I've had only one since May.

It wasn't until both my husband and my doctor mentioned how full my hair was looking that I finally started to believe that I was actually seeing results. I started at 125 mg, increased to 250 mg., and am currently taking 375 mg. I'll be adding in another 125 mg soon to take me to 500 mg. I'm not sure if I'll go higher than that. It will depend on the results I see and my liver tests.

I don't fully credit flutamide, though. I started Metformin on April 1 and then Flutamide toward the middle of May. I really think it was the combo of the two that helped.

[kimm]

Hi Hezzer -

I can I ask you a few questions? I see a couple similarities between us.

I have been on flutamide 250mgs since oct. and have been thinning rapidly still. For a while I even wondered if the flutamide was playing a role but it seems to have calmed down a bit overall (picked up a tad bit recently but I'm really stressing about this and can't seem to calm myself down!)

I had awesome hair this winter but now it's down by half!!

Did you notice any difference once going up to 375? None of the docs I'm now seeing will up the dosage.

Also Did you notice any change in hairloss or facial hair from metformin alone? I have script for that too but haven't started it yet.

Lastly - I also was diagnosed with hypothyroidism. Did you notice any difference in your hairloss/growth, or facial hair once getting that balanced? (i understand getting your levels right might help with shbg levels) I just took my first dose of Armour this morning so it will be a while before I know if it's helping.

I know we're all different an nobody is a doctor, I'm just trying to get handle on all this.

I'm presently bouncing around 3-4 doctors to get answers and it's really frustrating!

Sorry so long! As you can see I have a lot to consider at the moment!!

Congrats on your success btw. I'm hoping I can say the same here too soon.

[mssaprl9]

So this may be better suited for the alternative meds section but it seems as though most of the discussions on the subject have been in here.

Anyway....I finally got a script for flutamide. And a pretty high dose....500 mgs. I didn't expect her to go that high with it. But she will only let me use it for 3 months. She says that if it doesn't do what it's going to do by then then it's not going to work at all and there's no point in risking liver damage. I can sort of understand her concept of thinking and I'd be willing to do that if she said 6 months, or 8 months or a year because from the studies 6 months is the minimum time that proves it's usefulness. So while I'm excited and hopeful....what's going to really suck is if nothing happens in 3 months and then it gets taken away from me =( She even admitted that it would take probably 6 months on it to regrow hair....so WHY she made a 3 month limit, I dunno.

So has anyone seen results that soon? I personally don't really think that it's gonna happen in just 3 months. I've been suffering the severest forms of hair loss that PCOS can bring for nearly 15 years so if there's any hope for me left, it's more than likely going to take more than 3 months....but I guess I'll try and remain optimistic...miracles do happen or so I've heard.

Glitterstar, What is the name of the Dr. who RX'ed you Flutamide? Since we live in the same area shes probably not to far from me! Im dying for this drug...thanks

[Hezzer]

Did you notice any difference once going up to 375? None of the docs I'm now seeing will up the dosage.

If I'm remembering correctly, I was still only taking 250 mg when I first noticed changes.

Also Did you notice any change in hairloss or facial hair from metformin alone? I have script for that too but haven't started it yet.

I don't have major issues with facial hair . . . mainly just stray hairs in my underchin area. That has stayed the same. I didn't notice changes during the six weeks I was only taking metformin, but then I wasn't really looking for them. When I first noticed changes in the head hair, I had been on Metformin for about 12 weeks and Flutamide for 6 weeks. I've always thought that only 6 weeks of Flutamide shouldn't have created such a change, so I do think starting the Metformin 6 weeks earlier to the Flutamide was also a factor.

Lastly - I also was diagnosed with hypothyroidism. Did you notice any difference in your hairloss/growth, or facial hair once getting that balanced? (i understand getting your levels right might help with shbg levels) I just took my first dose of Armour this morning so it will be a while before I know if it's helping.

It's funny that you brought this up. In other threads, I've mentioned that getting my TSH levels into normal range may be a contributing factor as well, but I failed to mention it here.

My doctor and I have spent the last year upping and lowering my dosage of Synthroid trying to find just the right balance. At times I was kicked into hyperthyroidism and couldn't sleep for three or four days until I dropped my dose back down. But when I did lower the dose, my blood work showed that I was still over what the normal levels should be.

It was around the same time that I started Metformin that we finally got the dose right. I have to take a pill, 1/2 a pill, and a 1/4 of a pill. It's a pain in the rear, but my TSH levels are finally within normal range.

So the combo of the normal TSH levels, the metformin, and the flutamide could have been the combo that worked. I posted my PCOS story and this hypothesis in this thread:

http://www.soulcysters.net/i-think-i...w-hair-251101/

[kimm]

Thanks for replying!

I guess I need to be patient.

I just thought I was getting better and then noticed such drastic thinning suddenly that I freaked out.

So now the shedding seems to be down a tad (hard to tell some days) and I think I see regrowth, but the overall effect isn't there yet (what I mean is I still see the same amount of scalp)

So I don't know if I'm staying the same, getting worse, or hopefully improving!

I also started seeing a bunch of doctors and now have too many answers! (one doc gave me flutamide, one found the hypothyroidism, and the last wants me on fortamet.

Hopefully as I gather more pieces to this puzzle I can get myself straightened out before it's too late!

Thanks again, hoping you have continued success!

- Kimm

[GlitterStar]

Hezzer:

Yep, I plan on getting together as much info as possible to discuss taking it longer. I figure 9-12 months and if nothing happens then I'll be satisfied that I gave it enough time. So hopefully I can now convince her of that. I'm the first woman my doc has given it to as well and it took ALOT of convincing and hoops to jump thru but that also probably contributes to her wanting only such a short amount of time. I don't think she's researched it fully enough herself to know.

I think the other reason she agreed was because I've been on 2000mg of Met for years as well as 100 mg of spiro and nothing changes. It doesn't do anything for me. So when I asked for flutamide and we started the discussion she made me redo all the tests, the transvaginals, blood tests, 2 hr glucoses, etc. as well as ruled out any and all other possibilities like cushings syndrome, thyroid issues, ovarian cancer. She wanted to be absolutely sure she was treating PCOS even though all other prior tests she got from my other doctors told her that. When all her own tests came back showing no improvement or even worse than it was originally and after years on meds to boot I think she realized that obviously something more needed to be done and was a little more willing to take the risk. It was 7 weeks from the time we first discussed flutamide to the time she finally agreed and wrote me the script and even as she was writing it she was trying to talk me out of it and I was so afraid before she finished writing that she'd end up changing her mind, but she didn't.

So I'm hoping that combined with the met it will end up being the right combo for me too! Although I am a little concerned about my dosage. Most people I see start out at 75 or 125 and work their way up to 375 or 500 but she started me out at 500 a day from the get go. I thought that was a bit much so I'm pacing myself. I'm starting out at 125 for the first week, 250 the second week, 375 the 3rd week and then 500. And actually, I may decide to spread it out more which means my 3 months of refills will last longer than 3 months. If I can take less and still have it work I'm good with that. Plus I'm afraid that just bombing my body with 500 of a drug I've never taken before will make me sick.

My husband and I took pics of my head hair as well as other problem areas and I'm keeping good track of my menses and other things that have been giving me difficulty and will chart the progress and see how soon, if anything, happens. I figure also if I can have visual and written proof of it working then all the better to take to her as a reason why I need to stay on it.

Thanks for your info.

[Hezzer]

My husband and I took pics of my head hair as well as other problem areas and I'm keeping good track of my menses and other things that have been giving me difficulty and will chart the progress and see how soon, if anything, happens. I figure also if I can have visual and written proof of it working then all the better to take to her as a reason why I need to stay on it.

This is something I regret not doing, for my own peace of mind.

When hubby first started commenting on how much fuller my hair looked and how my bald spot seemed to be disappearing, it confirmed what I'd been hoping for, but I really wish I had pictures to compare.

[GlitterStar]

Glitterstar, What is the name of the Dr. who RX'ed you Flutamide? Since we live in the same area shes probably not to far from me! Im dying for this drug...thanks

I'll e-mail you her info. but honestly, don't get your hopes up. I was referred to her thru my PCP and that was months ago. It took me having to gather all my medical records from all my prior physicians, going thru a boat load of her own tests and a million other hoops to jump. It was 2 months from the time I mentioned flutamide to the time she finally agreed to write me the script and I had been seeing her for a few months before that even. I don't want you to think it was easy and that you'll be able to make an appointment with her and walk out with a script just because she gave me one. I'm probably one of the more severe cases of PCOS which made her more willing and even at that, she was VERY leary to give this to me and like I said, I have a 3 month cap on it's use. I've had PCOS for 15 years and have literally tried every drug. Metformin, Spiro, BCP's, Provera, Aygestin, Actos, Avandia, Vitex, Saw Palmetto, Men's Strength Rogain 5%, special script shampoos, and many others and she made sure that every other possibility was exhausted before she would even listen to me say flutamide. I don't know how long you've been dx'ed with PCOS but if you haven't exhausted all the possibilities and seen NO results with those, I really don't think she'd write it. And I think she'll consider your amount of hair loss too. When I took off my wig and she saw that I literally have NO hair in the crown of my head, I think that also helped her a little with the decision to give it to me. So I don't know what the extent of your hair loss is but if it's still mild at this point, I'd almost guarantee that she'd make you try other stuff first.

[hopelina]

@GlitterStar,
I am taking Flutamide 250 mg/ day for over 6 months now. My shedding stopped directly after starting Flutamide but this only lasted for a few months and than the shedding picked up again and now I am shedding. It is better than without any meds, I just added yasmine this week so will we see. So even if my hairloss is aggressive and my hair is definetly A LOT thinner to me, i can still style my hair so that it is not noticable. (a shorter cut, volume mousse).
I showed my endo this study to get Flutamide:
http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

As you can see there after 1 YEAR FLutamide showed SOME improvement which is great because all this drugs a meant to STOP the hairloss, regrowth is a big bonus.
If you did not exxagerate and you really have NO hair in the crown of you head (I can only say what you wrote but I KNOW we see our hairloss a lot worse than other do) I wouldn't try Flutamide at all because from Flutamide you can expect, as the studies tell SOME improvement but not any wonders. So I would choose not to poison my body with something that powerful. I would definettly work hard to always have money to pay for GREAT european hair wigs that will look better as my hair ever did, anyway.
This is only my personal opinion, and what I WOULD DO. I would do that because I am not confortable knowing I am taking such a powerful drug everyday and I don't know what will happed when going off it. I am a thin cyster so losing weight won't bring me anything for regulating my hormones...there's really nothing I can do to help myself without this meds .....
I would no way take more than 250mg as I have read a study (from pubmed I think but I don't find the link at my favorites right now !!) where it was tested 250 vs 750 mg day and 750 mg/ day did not have ANY benifits compared to to 250....

[mssaprl9]

I'll e-mail you her info. but honestly, don't get your hopes up. I was referred to her thru my PCP and that was months ago. It took me having to gather all my medical records from all my prior physicians, going thru a boat load of her own tests and a million other hoops to jump. It was 2 months from the time I mentioned flutamide to the time she finally agreed to write me the script and I had been seeing her for a few months before that even. I don't want you to think it was easy and that you'll be able to make an appointment with her and walk out with a script just because she gave me one. I'm probably one of the more severe cases of PCOS which made her more willing and even at that, she was VERY leary to give this to me and like I said, I have a 3 month cap on it's use. I've had PCOS for 15 years and have literally tried every drug. Metformin, Spiro, BCP's, Provera, Aygestin, Actos, Avandia, Vitex, Saw Palmetto, Men's Strength Rogain 5%, special script shampoos, and many others and she made sure that every other possibility was exhausted before she would even listen to me say flutamide. I don't know how long you've been dx'ed with PCOS but if you haven't exhausted all the possibilities and seen NO results with those, I really don't think she'd write it. And I think she'll consider your amount of hair loss too. When I took off my wig and she saw that I literally have NO hair in the crown of my head, I think that also helped her a little with the decision to give it to me. So I don't know what the extent of your hair loss is but if it's still mild at this point, I'd almost guarantee that she'd make you try other stuff first.

Thanks, do you still have my email? My HL isnt bad, you probably wouldnt be able to tell that its thinned. It still bothers me though, and I want to try my hardest to keep it from getting bad!! I have tried everything (yasmin, spiro, rogaine) It stopped shedding for a while but now its back. She might say no, but its still worth a shot!

[GlitterStar]

Mine really is severe. I have no frontal hair line anymore, I have one small quarter size patch right in the middle of the top of my head and then the crown is all gone. I'd been doing hair replacement pieces for years and just recently switched to a wig. The hair replacement is VERY expensive plus the cost of monthly maintenance. A good wig that I can style and fix is also expensive. About 700 a wig, or more. I work very hard. My husband and I have no kids, no credit card debt, and no car payments but thousands a year on hair is still a struggle sometimes. Not to mention If you've never had to wear one or deal with it then you wouldn't understand. They ride up in the back, you can't curl, straighten, style, etc. And worst of all I can't stay active. I can't play softball with a wig falling off, I can't ride my motorcycle, I can't do any of that anymore because of the embarassment of the hair loss. And I can't go out with just a hat or kerchief on because my loss is so severe you can still see it with those on. If I get the synthetic, the heat of being outdoors damages it within one or two wears (heat ruins them and I live in CA) but human hair is really pricey. To me it's worth it to take flutamide. I'm not expecting any results because I'm not naive. It's been over 10 years since my loss started. I stopped shedding years ago because I have nothing left to shed. After that long of time, I don't know that it would be possible to regrow hair. But I'd at least like to try it. It's sort of the last and final ditch hope for me. If I only regain enough to give me a hair line again and just enough to be able to add extentions for the extra density, I'd be happy.

But I'm not just using it for the hair either. The studies show that it has helped lower LDL cholesteral and raise HDL. I have high cholesteral. It also is suppose to help with the belly fat that us obese PCOSers deal with and can't get rid of. Fortunately for you, you're thin and don't have to deal with that. I've been working with a nutritionist for 6 months. And I mean really working. I exercise 90 min a day 6 days a week and am on a 1500 a day calorie, low carb and high protein diet. In that 6 months I've only lost 15 lbs. Granted it's better than nothing, but that's very slow loss and none of it is from the belly fat. It's from my legs, face, etc. Having extra weight there isn't what causes the heart attacks. I just had to have my glucose tolerance done, waiting on the results but my endo thinks I've gone from IR to diabetic and getting rid of the belly fat will help with that. So for me, taking flutamide is no more poison that continuing to have these issues that I can't resolve thru diet and exercise. That's just as poisonous to my body, if not more so. If the flutamide will help with that and I can lower my cholesteral, lose weight easier and quicker, and get my sugars under control, and maybe regrow some hair too.....I'm all for it!

[GlitterStar]

Thanks, do you still have my email? My HL isnt bad, you probably wouldnt be able to tell that its thinned. It still bothers me though, and I want to try my hardest to keep it from getting bad!! I have tried everything (yasmin, spiro, rogaine) It stopped shedding for a while but now its back. She might say no, but its still worth a shot!

Yeah, I still have your email but actually, I think I'll post it in the recommend Dr. area so others can have it too if they need it. Even if she won't give every one flutamide I still think she's pretty good. Even if she hadn't given me flutamide I'd still see her. She's by far the best I've had so far.

Oh and BTW, have you checked with your insurance yet? I had problems with mine covering it and I think I read that a few others did too. Fortunately mine was quickly resolved and now they're paying for it but had they not it would have cost me $248.00 out of pocket. So you may want to get a head start on looking into that. I know for some people that meant the difference between being able to take it or not....I personally would have paid it either way, lol.