Spiro or not?

[missy33]

Well after trying many things to stop my hair loss, none of which has worked, I think I am going to talk to my endo about Spiro. The problem is- I've hear so many horror stories about side effect when people went on it that I am a little scared. Do those of you who are taking it or took it think it is worth it?

Thanks for the advice.

[calamari3633a]

My endo prescribed spiro and I've been on it for 2 months. I was worried about the side effects that it tends to cause stomach upset since I have digestion problems and acid reflux. Luckily, I did not experience further digestion problems. I get thirsty. That's about it. I checked with my internist before going on spiro and she was encouraging. It seems to be a mild medication.

[Lyric]

I have been on it for years. The side effects I noticed when I was on 150 mg were sore breasts sometimes and increased urination. When I switched to 200 mg four months ago, I was surprised that the side effects seem to go away.Don't know why but I'll take it. Even when they were more apparent, it really seemed quite minimal to me. Everyone reacts differently though.

[VictoriaG]

I took a very low dose for nine months and had no side effects at all. But one thing you really will need to watch, if you take it, is your potassium levels. Just have your blood checked every few months, please, to make sure your levels stay where they should! Good luck.

[missy33]

Thanks for the replies- Vicki- about the potassium- does that mean I should not eat foods that have a lot of it (like bananas and potatoes)- or just not overload on them?

[VictoriaG]

Hi Missy - I would start by just not overloading on the known high-potassium foods, like the ones you mentioned, and OJ. It's tough to avoid them altogether (I was constantly sneaking a french fry or two from friend's plates), but if you get your blood checked periodically, you'll get a better idea how your body is handling it. Some people eat as always and do just fine; my doctor kept warning me to be careful, so I pass the info on to others. I hope it works for you!

[Kippy]

I've been on 200mg spiro/day for 8 months now. I can't say it doesn't come with a price, however, it is SO worth it. I have had great results. The shedding gradually slowed down after about 4 months of being on it, and around 7 months I noticed baby hairs popping up. I have good days and bad days on spiro. The biggest thing it did was cut my appetite down so much that I was at a very low weight for a long time (to the point where I had to force myself to eat). My appetite seems to have returned for now, so that's better. Other side effects are I definitely have to go to the bathroom more, I get very dehydrated at night, and I'm tired a lot more than I ever was. However, I believe the side effects are worth it for my hair. It's all manageable, just annoying.

As for the potassium, my doctor had told me not to worry too much and that the important things were to drink lots of water and salt my food. In the beginning I stayed away from high-potassium foods. Now I will have them occasionally and it's been fine.

[missy33]

Kippy- did you have a diagnosis when you started the spiro?

Also- for those of you who started spiro- did you notice an increase in shedding for a while? If so- how long did that last and how much higher was your shed? I just want to be prepared so I don't freak out and stop taking it.

[calamari3633a]

..........

[Kippy]

Kippy- did you have a diagnosis when you started the spiro?

Also- for those of you who started spiro- did you notice an increase in shedding for a while? If so- how long did that last and how much higher was your shed? I just want to be prepared so I don't freak out and stop taking it.

Missy- I was diagnosed with androgenic alopecia and started taking spiro that same day (yes that's how eager I was to fill the prescription!). I did notice an increase in shedding and it really scared me and I called the doctor a couple times but he kept assuring me that was normal. It's hard to say by how much more, but basically every time I ran my hands through my hair, out came tons of hair. The shedding started to slow after about three and a half months of being on spiro.

[topaz]

Kippy-
Have you seen any re-growth since being on spiro? Did you have a receding hairline (I do), and if so, has that changed at all? I tried spiro for three months, but saw no results so I gave up. How soon after you started it did you notice improvement? Sorry for all the questions, but I'm desperate. Thanks..

[Kippy]

Kippy-
Have you seen any re-growth since being on spiro? Did you have a receding hairline (I do), and if so, has that changed at all? I tried spiro for three months, but saw no results so I gave up. How soon after you started it did you notice improvement? Sorry for all the questions, but I'm desperate. Thanks..

Ask all the questions you like! I completely understand your desperation, I was the same way when this all started. I was losing hair right behind my hairline, my part was widening, and I was noticing spots on my head that had very scarce amounts of hair. I started off with an incredibly thick head of hair and I'd say I lost roughly half.

I started seeing less shedding about 3.5 months after I started the spiro. Around the 5 month mark my hair had completely stabilized and was only shedding the normal daily amount for any person. I've been on spiro for a total of 8 months now and roughly 4-5 weeks ago I started noticing baby hairs popping up on my scalp. I take 200mg/day of spiro and not once have I missed a dose--I take that stuff religiously!

Do you have a strong enough dosage? I've heard that a lower dosage of spiro isn't all that helpful. The only disadvantage of a higher dose is that it does come with its side effects. But IMO, it's worth it for your hair.

[NoraBe]

Hi I just have a question after reading some of your posts regarding spiro. Well I started taking 50mg in December increasing my amount to 150mg a day. around beginning of March I noticed a decrease in my shed THEN I did skip a few doses waiting for my prescription to get filled again and randomly forgot my afternoon dose. I took 50mg morning 50 midday & 50 at night. Anyway I started shedding really bad in March and now here we are beginning of May & my shed is worse than it EVER was. I now take my 100mg in morning & 50 mg at night & never forget have done this way since around beginning of April. So it's been a total of over 4 months I've been on spiro. Did u see any sort of shed? I'm desperate & praying this will stop my cure. My dr doesn't want to increase my dose.

I started losing my hair exactly 1 year ago as a result of taking a progestin only mini birth control pill. That I took for a year until I realized it was making my hair fall out.

anyone who read this I thank you, I feel alone during this journey, but I'm not giving up hope just yet, I just need someone to respond with more hope:) thank you!

[Kippy]

Hi I just have a question after reading some of your posts regarding spiro. Well I started taking 50mg in December increasing my amount to 150mg a day. around beginning of March I noticed a decrease in my shed THEN I did skip a few doses waiting for my prescription to get filled again and randomly forgot my afternoon dose. I took 50mg morning 50 midday & 50 at night. Anyway I started shedding really bad in March and now here we are beginning of May & my shed is worse than it EVER was. I now take my 100mg in morning & 50 mg at night & never forget have done this way since around beginning of April. So it's been a total of over 4 months I've been on spiro. Did u see any sort of shed? I'm desperate & praying this will stop my cure. My dr doesn't want to increase my dose.

I started losing my hair exactly 1 year ago as a result of taking a progestin only mini birth control pill. That I took for a year until I realized it was making my hair fall out.

anyone who read this I thank you, I feel alone during this journey, but I'm not giving up hope just yet, I just need someone to respond with more hope:) thank you!

Hey NoraBe,

I have never skipped a dose so I can't really tell you my experiences with that. However, my doctor did tell me that even though for the moment my hair isn't shedding like crazy, I may still experience periods of high shedding during the first year or so on spiro.

Also if you have androgenic alopecia (like I do), the hair sheds pretty evenly and it is very rare that you would go completely bald.

Hope that helps :)

[NoraBe]

Wow thanks for your response! It's great to know I actually have someone to communicate with who can relate. After reading some of my previous posts, I realized my shed had stabilized only after 2 months on spiro & did this for a month then I got flaky on my dose & I'm now back on...I'm wondering did u have a "dred" shed on spiro in the beginning at all? I wonder if my shed is normal right now?

I'm praying it's just a normal shed (although it's lasting way too long) and then my hair will stabalize....did u see any pattern. If my hair will just stop shedding I can deal with that....
thanks for listening:)

[Kippy]

Wow thanks for your response! It's great to know I actually have someone to communicate with who can relate. After reading some of my previous posts, I realized my shed had stabilized only after 2 months on spiro & did this for a month then I got flaky on my dose & I'm now back on...I'm wondering did u have a "dred" shed on spiro in the beginning at all? I wonder if my shed is normal right now?

I'm praying it's just a normal shed (although it's lasting way too long) and then my hair will stabalize....did u see any pattern. If my hair will just stop shedding I can deal with that....
thanks for listening:)

No problem! I am happy for the correspondence as well. I'm doing fine now but I know this is something I'll always have so I don't know what's down the road.

Yes I had a dread shed when I started spiro, to the point where I had 2 separate people ask me if I had cancer because that's how much hair was falling out of my head. Everywhere I went I'd leave my hair and every time I looked down at my shirt there was tons of hair on it. I'd wake up in the morning w/my pillow covered in it. I called my doctor nearly in tears one day and he told me I needed to just wait it out. About 3.5 months later my shedding started to slow :)

If you want a really good doctor I'd suggest Dr. Redmond in NYC. He has treated over 5000 women w/the same problem and has had a very high success rate. He costs an arm and a leg (doesn't take insurance) but IMO it's definitely worth it.

[NoraBe]

I LOVe his book...just ordered me some finasteride. Do you have Dr. Redmonds contact #? I'd love to speak with his office. I can't make an appt though I live in CA with 2 young children no way mommy can get away:(

Thanks though maybe the office can answer a few questions?

[missy33]

Kippy-
I know you said you you lost a ton of hair for a while on spiro- were you using a concealer or a wig at the time, or did you just keep your hair natural during this time? How bad did it look?

Sorry for all the questions- but my hair already looks so bad I can't afford to loose much more without wearing a wig and I just want to be prepared.

[Kippy]

NoraBe-- here is Dr. Redmond's website, it has all his contact info and there is also a lot of other info about hair loss.
http://www.hormonehelpny.com/

missy33-- I was lucky enough to have a super thick head of hair. I lost about half my hair (which on a normal person would have been most of their hair) but I ended up just with thin but still normal looking hair. I did notice wide spots/spots with scarce hair but they were easy to cover up with other hair. I did however treat my hair really nicely. I didn't straighten it, use pony tail holders (always kept it down and loose so that there was nothing pulling on it), no blow dryer, I used a very loose tooth comb instead of a brush, and I used all natural shampoo/conditioner. While these things will not make your hair grow back, they do help keep the hair you still have nice and healthy.