hair loss

[amartaingirl]

Hair is thinning...after 2 months
Question...I am considering going from 3xday
down to 1xday

do you think that will help with the hair loss?

[topcop229]

It could, but you have to weigh the hair loss against the possible benefits that you might lose by taking less Elmiron.

There is another post around here about hair loss, and many noted that while it seems to be a great deal when you're in the shower or brushing your hair, sometimes it's not as much as we think. If possible, I would try some of the other possible remedies before changing your meds, but if you do, make sure to talk to your doc.

Good luck!!
Claudia

[laker46580]

Me Too!!!

Hi there,

I to am seeing some hair loss after 1 month of using 1 pill twice a day. My hair has become very thin above left ear in one patch. I am really scared but most say it usually in one patch and thats it. I have very fine thin hair anyways.
I had 2 visits to emergency rooms and countless office visits before being diagnosed. I am somewhat in remission I think. I am wacthing what I drink and somewhat what I eat along with the elmiron.
I haven't heard of many people saying they have lost much hair. I hope and pray that's true. My uro/gyno said she only had one complaint and it was very minor.
Hang in there. I feel the help outways the side effects so far.

~Mary

[humpieumpumkin]

How soon does the hair loss start? My fiance told me this morning my hair looked like it was thinning and like I was wearing a wig. I was upset but I also got concerned. The shocker is it has only been 6 days! Is this a coincidence or should I call and let my doctor know? Thanks!

Erika

[amartaingirl]

six days!!!

six days has got to be a coincidence!!
it took me about 2 1/2 months
and then, its not a whole lot

[humpieumpumkin]

Well thats good! Ill tell him to go shove it. It was just a bad hair day!

Erika

[Claredale]

I was on Elmiron for several months and started losing my hair. I have been off of it for probably 3 years now. I never really saw any benefits from the elmiron and my hair is slowing growing back in after several different treatments. It came out alot around my forehead and my right ear. I also have a patch that started at the back of my neck which moved upward.

There are several threads about this subject and some of the remedies that have helped restore hair growth. I started wearing a wig last summer which took away alot of stress from trying to style my hair just so that my bald spots wouldn't show. I still get alot of compliments on my wigs (I have 2 different styles now!)

One strange thing that I have noticed is that alot of the new hair is coming in gray, but Clarol can take care of that when necessary!

I have also had some doctors say that the hairloss could have been due from the stress of the IC as well as all of the meds that I have been in throughout the 18 years dealing with IC.

[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.

[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

[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.

[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.

[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!

[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...

[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?

[~*~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