Please please give me any advice about hair loss with Elmiron - Interstitial Cystitis Network Support Forum

Natsy · 11-24-2009, 11:50 AM

Hi guys

I am feeling so down about hair loss from elmiron. I've been on it for over 6 months and the hair loss seems pretty continuous. I just touch my hair and strands come away, without running my fingers through it or anything.

I feel like I am being so shallow by letting this get to me so much. But I really like my hair - it is naturally thick, dark, wavy and long. I would always get compliments on it. Now is is just getting thinner and thinner. I cry about it often and I'm worried about my hair for the wedding in a few months. My fiance said that my hair was the very first thing he noticed about me so I wanted to have my hair out for the wedding. I think that by then I am not going to have that much left. I've never had a pony tail this thin in my life. It feels like I've lost 1/4 to 1/3 of my hair.

Why and how does Elmiron cause hair loss? Do the manufacturers know? I thought that maybe if I could find out why it makes the hair fall out I could work out how to combat it.

Can you recommend anything to help?

I'm going to try biotin. Any other tips? Does the two week break from Elmiron really help with hair loss?

My urogyno said he'd never had any of his patients complain of hairloss before.

Any advice would be greatly appreciated. This one is really getting me down. I am at home recovering from surgery for endo and all this hair on the bed is so depressing.

Thanks

x Natalie

***ICNDonna*** · 11-24-2009, 12:19 PM

Is the elmiron keeping your symptoms under control? Sometimes we have to make some difficult decisions. I have heard, but don't have any confirmation at all, that taking a break from the elmiron helped some people. I also know several people who stopped taking it due to hair loss.

I had a different side effect (headache) and had to stop taking it.

Donna

vm · 11-24-2009, 05:40 PM

I'm so sorry you've had that side effect. I have heard others say the 2 week break made a difference and then for others it did not. I don't think you are being vain at all - it would bother me, too.

jlturner88 · 11-24-2009, 05:54 PM

I am currently going through the same thing with Elmiron. I was on it for 7 months and had to stop due to cost issues. I started again 2 months ago and 2 weeks ago my hair dresser found a thinning spot that within 2 days was a huge bald spot. I have naturally thin fine blonde hair so you can easily see my scalp where it is thinning, so my styling options to cover it are limited. Being a college senior and looking for jobs, hair loss does not help my confidence or my stress level. I called my urologist today and he told me to go down to 1 elmiron a day and start taking Biotin 3 times a day. Unfortunately the hair loss seems to be getting worse everyday so i'm not sure how much it will help.

I would suggest asking your urologist if you should slow down or stop taking it depending on your situation. It is supposedly a side effect in 1-4% of cases but it does not specify the severity. It is supposed to stop after you stop the meds but I've heard people having hair loss for months after stopping. I also experience headaches with the Elmiron, so I am considering stopping all together and trying another approach.

Hopefully we can both figure something out and your hair will look beautiful for your wedding. I'm to the point of considering a wig while my hair grows back. Let me know what your urologist says about your hair loss.

Zygala87 · 11-24-2009, 10:06 PM

Natsy your fiance will not stop loving you becasue of your hair. I can only imagine how you feel just the same. I lost big patches of my very think auburn hair 6 month into taking elmiron. The horror of my IC pain and the help the Elmiron gave to me made me deal with it whatever it took. I had all my hair cut off and wore a wig for a year. I used a scarf around the house. When my hair grew back it was not as thick but OK. One can buy hair add-ons such as a pony tail. The help Elmiron gave me was worth it. I'm doing very well right now. I'm so sorry this is happening to you at this time in your life. I doubt anything I could say would make you feel better. I'm just letting you know of my own experience. I care very much but I have no good advice to help you. Hugs, Ziggy

123456 · 11-25-2009, 06:01 AM

Also try fish oil supplements.

Natsy · 11-25-2009, 11:01 AM

Thank you for all the support. It is nice just to know that there are people out there who understand. I don't know anyone personally who has IC so it makes hard when there is nobody around who knows what you're going through. Thank goodness we have this place to come for advice and support.

I'm not due to see my urogyno until Feb for my post-op but maybe I will try to get in touch with him before hand. He is a busy guy and hard to pin down. I would ask the regular doctor's but they don't know anything about Elmiron!

I wish that the people who make Elmiron would give a little more info about this hair loss. They must have done so many studies and trials before the drug got out there.

Donna asked does the Elmiron help me. I think so but it's hard to be certain. For one, my IC was not at it's worst when I started taking it. Secondly, it seems to take effect gradually so it is hard to be sure. I haven't noticed a masssive improvement but I have definitely noticed some improvement.

I'm sorry to hear that others among you have suffered from this too. Losing your hair really knocks your confidence. Luckily, my fiance is really kind and supportive. He always tries to reassure me I still have plenty of hair left but I still worry just how much more I am going to lose. It worries me that even if I stop Elmiron it could be some time til I get the hair back.

I think that I might have to consider other options. How long would one ideally continue to take Elmiron for?

Thanks for your kind words. It really helps and is comforting to know that others understand.

xxx Natalie

dawnja · 11-26-2009, 03:00 AM

Hi Natalie,
I'm so sorry this is happening to you. You are really young, and this illness can just feel so unfair! I was taking Elmiron and started noticing lots of hair clumps in the shower. This has always happened to me, but it seemed like more hair loss than before the elmiron. A couple of weeks ago, I started Cystoprotek and aloe at the same time, and it seemed like they did more for me than the elmiron did anyway, so I quit taking the elmiron. I still lose clumps of hair in the shower, but it seems like less than before.
I'm not really trying to give you medical advice, but it is always nice to know what works for other people, so you have lots of options to consider. I wish you the very best!
Dawnja

maryla · 11-26-2009, 04:15 AM

Have you tried instilling it directly in your bladder? Dr. Rackley at the Cleveland Clinic says that when it is ingested orally, you are only getting about 3% of the affect anyway. Also, because it is NOT going through the digestive tract, you do not get the general side affects. It could be something you take to your uro?

Hope this helps!! Hugs and blessings!

Happy Turkey Day!!

Glenda2 · 11-26-2009, 04:42 AM

I was only on it about 3 weeks and due to the bad side effects I had to quit.

The entire back side of my scalp is thin.

LithEruiel · 11-26-2009, 05:54 PM

Natalie, I think you have some really good questions/concerns - you should seriously call the manufacturer of Elmiron or write them a letter. Here's their contact info: http://www.orthoelmiron.com/contact-elmiron.html

I'm sure you'll look great for your wedding. If you're worried about it maybe get some extensions...I think if their done professionally you can't even tell, or do an updo maybe. I'm sorry that's happening to you...like having IC isn't enough! That side effect scares me some...I'll periodically have much more hair than normal stuck to my shirt and I'm like 'oh no' even though I'm pretty sure Elmiron isn't making my hair fall out...I have very thin hair to begin with so it wouldn't take much for it to be noticeable (I've been on it over a year so if it was going to fall out it would have by now). I say that's it's helped me so much I wouldn't quit taking it even if it did, but I'm not in that situation, so I don't know how I'd really feel about it. Elmiron seems to be a problem for so many people, I wish they'd come up with someone that more people could tolerate and get relief from.

Talula · 11-26-2009, 06:47 PM

I have asked my urologist about elmiron and hair loss, and she said just 3-4 percent of people lose hair. I am supposed to be going on it, if they can confirm that I have IC, next week. I have been losing my hair for two year already for some unknown reason(I'm only 30), and am sure I will be prone to the hair loss. I have heard the elmiron hair loss isnt permament though. If it helps you alot, I'd say it be worth it. You might want to wear a wig or start wearing scarves on your head. Thats what chemo patients do, also medication induced hair loss. What's happening to you is not so different, except we are lucky, that we will not lose our lives from this. But on the other hand, we can't make I.C. go away. I know what you'r going through, losing hair. Short bangs, scarves, a hat or down the road a wig can be your freind! Just make them a part of your personal style and be proud of who you are!