Please read if spiro didn't work for hair loss, but something else did

Carimo · 08-03-2005, 12:12 PM

Hi,

This is my first post. I'm devastated by hair loss, and none of the success stories I've read give me any hope, as they are mostly clustered around the facial hair issue (which I have, but which is infinitely easier to deal with).

I am begging any U.S.-based woman who has had no success with spiro, but has found another medical answer - dutasteride or met, for example - to answer this. I don't mean to be harsh, but I'm seeking responses from dry-eyed straight shooters only. I am more heartbroken than anyone knows about this, and things like "hugs" and crying emoticons make me feel sadder, and take the fight out of me and I really don't have the fortitude for that right now. I know that such expressions help others, but they don't help me. Again, I don't mean to be a jerk, but I want comfort in terms of content only - I want to read about the specific med and dosage that saved you in this area, after spiro failed. I need some ammunition for doctor's visits - I want at least anecdotal evidence for something effective.

Hoping to hear from someone,
Carimo

ScaredSally · 08-03-2005, 12:22 PM

Hello there fellow hair loss sufferer

I am going to be straight with you in regards to MY situation and the hair loss.

I have seen a dermatologist, endocrinologist and numerous so called experts I have tried Spiro, Diannette, Androcur adn am now on Proscar and Metformin and Rogaine 5% and numerous vitamins my hair loss situation is progressively woresning and I am now considering cosmetic options ... I currently wear hundred hair extensions as I have male pattern its ok at the moment becaue the top, although thin, can cover the bonds.........

From my experience (and please don't quote me), from www.heralopecia.com and wigsupport forum there really is nothing that can stop the hair loss .. have you been diagnosed with what type of hair loss you have ? I have androgen genetic alopecia which is when the follicle shrinks and dies .. my temples are bald and I am desperate to get a good hair replacement.

My life was turned upside down in teh last two years once I was diangosed .... I considered suicide and was so depressed I could barely function and had to do temporary work to make ends meet as I was not "stable" enough to work full time ... I have eventually (touch wood) come out of that dark place and am now focusing on other ways to improve my hair... the shedding has never slowed and in my case I have given up on medical intervention and will proceed into hair peices that are bonded to the scalp.

If you want to read more go to www.heralopecia.com the forums have so many of us on there... I go under Scaredsally so if you want to chat feel free to PM me or write to me at sc@eashaw.com.

I hope I havent disheartened you and you may be a lucky one .... its just my experience

tess987 · 08-03-2005, 12:37 PM

Hi Carimo,

You should consider something called flutamide, or eulexin as the medicine is formally known. A lot of women have had success on that, although it is a pretty strong medication, far more potent than spiro.

Also, have you tried using Nizoral shampoo? It really helped slow down the shedding for me. You can get it over the counter in 1% form, or by presciption in 2% form. (although there is debate whether the 2% is any better than the 1%.)

also, are you on any kind of bcp at the moment?

ScaredSally · 08-03-2005, 12:44 PM

Yeah Diannette (Diane35) slowed mine down but due to high blood pressure I had to come of it .... I asked my Endo about Flutamide but because it can cause swelling of the liver he said he was reluctant unless I get really desperate (which I am of course).......

The hair loss in my case is so severe that even if it stops I would not walk aorund wiht my natural hair so I kinda given up on my case.

StarMaiden · 08-03-2005, 03:29 PM

Quote:

Originally Posted by Carimo

I am more heartbroken than anyone knows about this...

Nope, others of us DO know.

I don't do emoticons, and I like to think of myself as a "dry-eyed" straight-shooter, as you put it. All the researc, evalution, and critical thinking I've done in dealing with this problem has led me to the conclusion that there is no very effective medical treatment for androgenic alopecia, which is the kind associated with PCOS usually. I haven't seen any convincing evidence on a trustworthy clinical scale that ANYone is growing their hair back and keeping it.

You want anecdotes, they are out there. You could follow up on the many anecdotal suggestions one at at time you may well find something that works. The posts in this thread have already mentioned the treatments most likely to give you any results, and the treatments that a doc is most likely to present to you.

Dry-eyed straight-shooting? I got a hairpiece, and I love it. No looking back.

guineapig · 08-03-2005, 10:05 PM

I just wanted to say, if you find anyone in the US to prescribe you Dutasteride, let us know.

I have been to 17 doctors and the best they will prescribe for me is Spiro, and suggest Rogaine. Yeah, thanks Doc.

guineapig · 08-03-2005, 10:12 PM

StarMaiden, if you don't mind me asking, how does your family / S.O. feel about your hair piece? Or do they not even know? I am thinking of ordering the "wiglet" on a headband for my male-loss. you're welcome to pm me if that feels more comfortable!

StarMaiden · 08-04-2005, 12:14 AM

Guineapig, I certainly don't mind your asking! I don't have a SO, and I was divorced about a year before my serious hair loss started. So I don't have the potential issue of dealing with a man in my life and how he would feel about my hairloss. I'm not dating yet, and I don't mind saying, I'm afraid for the future, of how I will deal with the issue. I only hope that when I have to deal with it, I will do it with my usual sense of humor and determination. It really does worry me sometimes.

The reactions from the other folks at the Wig Supprt website who have special people in their life, is that most of the guys honestly don't care that much. Those who are married all seem to have devoted, supportive husbands, or partners, who aren't bothered by the hairpieces one bit.

Other family members, my bro and sis and sisters-in-law know. They are sorry this happened to me, and one sister, who looks like it's starting to happen to her, too, is a little freaky about it. The others, are all proud of me that I took the problem in hand and found a way to deal with it, and think I am really courageous.

My nine year old niece doesn't know. Simply because she has ZERO discretion. I'm not rabid about my privacy in this regard, but I am not ready to discuss it yet with the entire city, and if my neice found out, believe me, everyone would know.

If you want to learn about hairpieces, please come over to Wig Suppport at http://groups.msn.com/WigSupport/general.msnw . The group is great, supportive, and the information is fantastic!

ScaredSally · 08-04-2005, 07:43 AM

Hey there Starmaiden

I know I ask you a lot of questions on wig support but I have been told by my hair stylist (or supplemental hair lady) that I would be a good candiate for hair transplants... at the front (saying that I am thinning all over the top and the crown too so I cant figure out HOW its going to look good). but have you ever considered hair transplants ? your loss sounds very much like mine

Carimo · 08-04-2005, 11:24 AM

Thank you everyone for your replies. I think I've had a similar experience to that posted here - 200 mg spiro is given as the way to go, no matter how ineffective. I've been on Yasmin and 200 mg spiro off and on (lack of insurance coverage) for 3 years, and I haven't been helped in this area.

Of course, if there's nothing that stops and reverses the loss, I suppose most practitioners are doing what they think is best. I had no idea that doctors were so loathe to prescribe dutasteride - I mean, I understand it, but - I don't even know what to write. I can't adequately convey the level of desperation I feel about this to my doctor - that is what I meant about no one knowing how I feel because I don't express it, which probably ain't too healthy. I'm afraid that if I'm not perfectly composed, my doctor will just write me off as a whack job and well, that's that. It feels a bit demented to try and compel a doctor to prescribe diane 35 or flutamide or dutasteride - how does one approach that? I guess I'm spinning my wheels.

Well, thanks again for the responses. Take good care. If I hit on anything positive, I'll post it.

ScaredSally · 08-04-2005, 11:59 AM

Dianette (Dian35) certianly helped slow the loss in my case ... and my sister is having good holding with it ... I would just say to your doc that you want to try this pill because you have heard of its advantages. .. as for Flutamide i am too aware of the health risks ....

Please let us know hwo you go

StarMaiden · 08-04-2005, 02:58 PM

Quote:

Originally Posted by Carimo

I'm afraid that if I'm not perfectly composed, my doctor will just write me off as a whack job and well, that's that.

Oh, Carimo, I know what you mean! I was lucky to once have a doctor for eleven years, that I could go to, and totally lose it in front of him, and he was fine with it, and didn't think I was nutz. And on the other hand, I could also order him around and tell him, "I'll be doing this........." and he was fine with that too. I wish all docs were like that. I certainly wish my current ones were.

So what I have done in the past, and now, when I go to the docs, is I write stuff down, and give it to them on paper. You can start out by saying, "This is an issue that I'm extremely upset about, and I'm not sure I can discuss it with you easily, so I've brought in my questions. Would you take a look at these meds I've written down, and tell me if you think these would be right for me?"

Good luck. ( I DO know the bottomless pit feeling of desparation about this.)

guineapig · 08-04-2005, 02:58 PM

Diane 35 is also "illegal" in the USA. Because the cyproterone acetate is banned, you see...although I heard it is pending approval for mens prostate problems. But dutasteride and finasteride both cause *severe* birth defects so that's why they are unapproved for women. Of course spiro is no joke on male fetuses either, but docs seem more willing to prescribe it.

I have never talked to a hair transplant doctor, but I think I'd be a good case...my hairloss is stricly male-pattern receding hairline, like an old man. The back and sides are still bushy and grow out of control and would easily be able to handle donor strip areas. The front/bang area of my hair grows like 1" per year, while the back literally grows a foot. Male pattern stinks! I am going to get a transplant when I graduate (and then can get the money by working cause I don't have 4000-12000$ now) unless a drug does some miracles first. I think Kat grew back a lot of her hair on flutamide, if I recall correctly...But in the meantime, the wiglet is neat and only like $20 so I'm gonna try that. Plus I get to sport bangs for a while without chopping them off and taking 5 years to regrow.

StarMaiden · 08-04-2005, 03:02 PM

Quote:

Originally Posted by ScaredSally

... but have you ever considered hair transplants ?

Well. I've had a little ongoing fantasy at times that I could have a nice healthy hair transplant right across my front hairline, so I could wear my topper set back and my own hairline showing, like Merry does. But the cost of a hair transplant will never be in my budget, so I've never seriously considered it or researched it. So I honestly don't know much about whether it works for us. Have you asked this at Wig Support or heralopecia.com ? I'd be interested in the answer too.

Carimo · 08-05-2005, 01:11 PM

Hello to everyone. I hope you are all well. Star Maiden, that is very good advice to write things out. I'm going to do that in the future. It's otherwise very difficult to organize my thoughts, and to get out what I must get out in a doctor's visit.

I have what may be an unanswerable question (and regardless, it's certainly a long question - I never know what to leave out), but I would love feedback.

I spoke with my doctor yesterday. He's prescribed Proscar, and won't give me eulexin or dutasteride. I have been a patient of this doctor for only 2 weeks, as I am searching for someone who takes my insurance. I have made 3 appointments with 3 different docs between now and October, because I'm trying to find a good fit. This doctor is a gyno/reproductive endocrinologist, and is listed as a hirsutism specialist. Okay. So with him, I began spiro at 200 mg/day, to supplement the Yasmin I've been on pretty consistently for 3 years. I have been on 200 mg spiro for most but not all of those 3 years, because for a while I had no prescription coverage, and without it, spiro was over $100/month, while the Yasmin price was $40 versus $20.

So, after about 2 weeks on spiro, I'm feeling bad. I felt this way - very weepy, very, very depressed - the first time I started taking it, in 2002. What's different now is that in the past few months, I've had a very strong increase in seborrhaic dermatitis, both in my scalp (which crusts daily, and often bleeds when I scratch because of the itching) and my left eyebrow. I've also had an increase in body odor. And my hirsutism and hair loss haven't been helped, at all. So while I can't say that I've been on these meds continuously for 3 years, it has been in my bloodstream at the requisite levels for a while.

My question: should I start with the Proscar, or wait and see if I can get someone else to prescribe eulexin or dutasteride? Is it at all common for spiro not to work but for proscar to work?

I know I am spinning my wheels. I know that no one can tell me it will work. I just feel scared to make a change. And I'm so angry at myself, that I didn't figure out some way to get the money to take the spiro for every single day for the past 3 years, so that I could look at myself and know that I tried, and that it failed me and not, maybe the other way around. I hate myself so much.

I'd appreciate any feedback.

Thanks,
Carimo