hair loss

[sacausa]

It took 2yrs after stopping Elmiron for my hair to return to "normal"

[amartaingirl]

ok ladies

ladies..for all your posts

i quit elmrion for 5 days
feel great!!

but the hair is still comming out in the shower

how long till it stops falling out?

I couldnt find this answer anywhere??

[Claredale]

Your symptoms sound like mine except I noticed the first thinning along my neckline. They it started on my forehead. I started cutting my bangs more and more and kept my hair in a pony tail. They I started noticing it falling out along both temples especially the right side. I have been off elmiron so long now, that I have gone through several tests to see if I have elipecia as well, but my hair is finally showing signs of growing back especially on my forehead. I still need my wig, but I am hoping that by this next summer, I will be able to feel comfortable swimming. We have a pool and I have either swam with a cap on or only with my family around.

I used to have great hair as well. Most of the hair that is growing in gray except for 2 little patches of brown on my forehead.

Tracey

[sunspot127]

I've been taking Elmiron for a year and a half and have noticed that I'm missing a lot more hair from my forehead hairline than I used to. As a solution, I got some beautiful sweeping bangs. Nobody takes my Elmiron away, receding hairline or not!

I have also noticed that my hair might be thinning about an inch in from each temple. This concerns me more, but not enough to give it up just yet. It's done so much for me, I'm not sure that it would be worth giving it up. Even though I'm only 26 (and darnnit if I don't have some great hair)!

[PenguinK]

I've been on Elmiron since Nov. 2004 and have had hair loss. I too saw the 4% statistic and cried that I was in this little of a statistic.

I had VERY thick, dense hair before. Luckily, it's not falling out in patches, more or less an all over affect, but significant loss. I think I've lost about 1/3 of my hair. No one says anything, but my hairdresser (I worked for heir for years so she knows my hair) said she can tell, but it still is ok because I started with so much hair.

I went from 3/day to 2/day and didn't notice a change. I do notice a lot more loss when I am stressed. I think that plays a roll in it, but is not the whole thing. I hate when Doctors blame stress for everything they can't explain!!

I use Volumizing shampoos, mouse, etc that I never dreamed I'd need in my mid thirties and they seem to help fluff it up. I don't plan to quit the Elmiron until I find something that positively is the same without the hair loss.

My husband once said -" you can grow more hair, you can't grow a new bladder..."

Good luck, hope it helps.
KK

[madsbrittsmom]

hair loss

I had major hair loss that started exactly 2 weeks after taking Elmiron. I have written about my case before on these boards and after researching these boards it seems to me that there are many people who have this happen to them, I think it depends on your luck. Don't even try contacting Elmiron for a solution or advice, I did and they are no help. My doc says about 10% of her patients have had this effect. It was quite depressing for me and took about six months before I started seeing my hair start to fill out again. My hair loss was all over, not one spot. I bought hair extensions which definietly helped and I refused to wear my hair down for a long time. I cried a lot, I think it also depends on how vain you are as well. It was very traumatic for me I will never get on Elmiron again. I am being treated symtomatically now. I take urimar-T and potassium citrate which neutralizes the acid in the urine. These two things work quite well for me.

[Claredale]

I have been taking the Biotin for a few months and fish oil for a couple of years. I really started seeing some hair growth in the last couple of months. Especially close to my forehead. The main balding spot (trying to give you a visual) is like a U on the back of my head. I don't have much hair at all at my neck line and on the left side it goes up about 3 inches on the right side it goes almost to my crown. Like people have said that the precentage is low, but I used to have very thick hair and when I started the Elmiron is when I started noticing some bald patches by my neck. When I would vaccuum my bathroom, I would find so much hair in the beater bar. Everytime I washed my hair, there would be a clob at the drain. I had pretty long hair at the time, so I decided to cut my hair short thinking that maybe the weight was too much as well. The hairloss continued. I went to the dermatologist and was put on a couple different treatments. Nothing seemed to work. I have been using either a prescription shampoo, Nioxin (beauty stores) or the Burts Bee for several years. I never blow dry or use any other treatment on my hair. I use a comb as well. Like one of the about replys my doctor has explained the life cycle of our hair, but agrees that mine is definitely on the extreme side. I really believe that Elmiron started the process, since it was about 2 months or so after I started on the Elmiron. I stayed with it for a short time since I new it took several months to see the effects, but by about 6 months with no change and less hair, I stopped.

Like I said before, there are probably other issues with my hairloss since it has taken so long for hair to grow back including stress, meds, hormone changes, etc, but I am still hopeful that my hair will continue to grow back in. The wigs have made my life much easier.

[~*~Christine~*~]

yep, you pretty much have to weigh how well it works to how important hair is.
I've lost at least half my hair in the past 7 years but have recently researched ways to help it from falling out that I wish I knew years ago since I wouldn't have lost as much hair.

*Taking biotin (vitamin for hair growth and strength)
*Stopped using brushes and switched to wide, wooden, combs since they don't rip hair as much as brushes do.
*Stopped using shampoos with SLS (they're hard to find since most shampoos have SLS in it; I use Burt's Bee's) since they dry out and weaken the hair shaft, causing it to break easy and grow in unhealthy.
*Sleeping on a satin-silk pillow instead of cotton since cotton can cause your hair to stick to it and tear
*Stopped brushing my hair when it's wet, since wet hair breaks easily
*Adding more protein to my diet

[rachann]

white hairs

I've experienced the hair loss as well. I first noticed it in the shower. I actually have thick crazy hair so I don't mind the hair loss. I am concerned about getting white hairs. I am only 27 and I am getting snow white hairs in my crown. Is anyone else experiencing this?

[Huntermommy]

Hey there.. I just went to my uro doc and he said that hairloss is usually within the first 4 weeks of taking elmiron and that it only happens to about 1 out of 100 women. I too am experiencing hair thinning. I have been on elmiron for 8 months. he told me to stop taking it for about a month and see if it makes any difference. Needless to say, it is not making any difference and I am flaring up more often. I will be starting the elmiron back in 2 weeks. He said that as we get older our hair goes thru stages, healthy and strong to weak and feeble back to healthy and strong. I am also letting my hair grow out and using a straightener on a regular basis which is harder on my hair. I have switched shampoo and I am now using Nutri-Ox...Nutri-Ox is something that my hair stylist recommened and I bought it at a beauty supply store. It is a serum that you put 2 droppers full on your scalp and massage into your hair. I have noticed, I do not have as much hair coming out when I blow dry now. Hope this helps you...

[Berkshire Road]

Freeze-dried aloe, available in tablet form in the ICN Store, may have a similar effect on the bladder as what Elmiron is supposed to do, but without the hair loss. Might be worth a try.

Judyblue -- I've been on Elmiron for two years with no hair loss, but you're exactly right: If my hair were falling out, I would not be comforted by the knowledge that 96% of other patients were being spared. Actually, I think I'd be even more irritated! You do what you need to do. Just make sure you're communicating with your doctor and that he/she knows you've stopped the Elmiron. Experimentation with different combinations of treatments is something we've all had to go through, but it should be done under the supervision of a competent physician. When I mentioned aloe to my doc, she had never heard of it, but she got online right then, looked it up, and said, "Go for it."

Good luck. Keep us posted!

[judyblue]

In my perspective the statistics go like this:

If Elmiron does not make your hair fall out, the stat on this side effect is 4%.

But if Elmiron makes your own hair fall out, then for all you care, the stat is 100%.

There are other answers out there. I really wanted Elmiron to work for me, but I can wait and try it again or if I decide I need more relief than I am getting now, I will continue to investigate other routes.

[mary124]

I've been on Elmiron for 12 years now, taking anywhere from 3 caps aday to now taking 6 aday. Never notice hair loss. I think like someone else has said here there are other posts and somewhere its mentioned that only like 4% of patients lose their hair, which is a very small amount.

[Zygala87]

Hello Friends. Just a thought. I believe dyeing my hair for about 45 years caused a lot of chemical toxins in my body that it sure did not need. When I was young I think my body was more able to deal with them. Now that I am older my body said "that's all I can take" I was DX with IC last Summer. Went on Elmiron, lost some hair and asked myself maybe I should let my hair grow out to it's own gray self. I say gray due to the look of my roots. I had my hair cut about two inches long, bought a very nice wig and will wait for my own hair to grow out. I am lucky that I am one that Elmiron helps. I will stay on it if I go bald. Never want to return to the horror I was in at the begining yet I know I could flare at anytime. I often wonder if that is why more women get IC then men. Hair color. I sure don't know. Ziggy

[judyblue]

I stopped Elmiron today, hair loss was one of the reasons.

In the 5 weeks I have been taking Elmiron, my hormones have gone even crazier than usual. I have had 3, yes, 3 periods in the past 6 weeks! I started to have night sweats and had my first daytime hot flash. The seborrhea on my face broke out so bad, I had to get out the steroid cream. While at first I thought I was imagining the hair loss, I could no longer deny it when I had handfuls of hair after applying styling gel.

I have stopped to see what happens with the hormones, and also because the aloe vera I started nearly 3 months ago has really kicked in and my bladder feels much better. I used soy supplements before IC to keep my hormones in balance, I have restarted them and so far no side effects from them.

I have read extensively throughout this forum about hair loss and methods to work on hair regrowth. I appreciate all of the advice and wisdom and I am using many of the suggestions.