Elmiron and hair loss - Interstitial Cystitis Network Support Forum

Ratchada · 10-07-2004, 01:31 AM

Help! I have been on Elmiron for almost three years. Last spring my hair began thinning out. I thought it was a reaction to anaesthesia after surgery ( it has happened before) but this time it is continuing. My question: Does anyone know whether Elmiron can cause generalized hair loss (which is my situation) or is it manifested in just one spot? I am also on Tamoxifen, but cannot find anything that would pinpoint the cause to that medication. If anyone can steer me to the right information source it would be most appreciated. Thanks. Ratchada

vm · 10-07-2004, 02:30 AM

I think I have read in the Elmiron literature that it is generally in one spot, but I think there are people who feel it caused overall thinning.

OK, I went and found this on the Elmiron site:

Quote:

Alopecia is associated with pentosan polysulfate and with heparin products. In clinical trials of ELMIRON, alopecia could begin within the first 4 weeks of treatment. Ninety-seven percent (97%) of the cases of alopecia reported were alopecia areata, limited to a single area on the scalp. http://www.orthoelmiron.com/hcp/section_j3.htm

liznazz · 10-07-2004, 02:34 AM

Elmiron can cause hair thinning, but the percentage is low (3-4 percent). I am on my 6th month of elmiron, and still worry about this issue. HOWEVER, there are other factors to consider. For example, when talking to my urologist about the hair loss factor, he told me you should also take into consideration hypothyroidism (which I have), age related issues (menopause, peri-menapause); and nutrition. If you are not getting enough protein and vitamins through your diet (or supplements) this can inadvertently cause some hair thinning. I don't know your age, but I am in that peri-menopausal group. I would advise you to call your M.D. or dermatologist and perhaps they can give you more information on the other meds you are taking and whether or not it causes hair thinning. I hope this helps you a little. You're not alone--I worry about it too!

Teach2 · 10-12-2004, 03:42 AM

I have been on Elmiron for 3 months and I am experiencing alot of hair loss and thinning to the point that I am stopping the drug. The IC diet has really helped. I am going to give it a go without the Elmiron for awhile.
I already have baby fine hair so this hair loss has really effected me.

TammyM · 02-23-2006, 02:46 PM

I am also experiencing hair loss with Elmiron. I've been taking it for little over a month now. I haven't noticed any bald spots yet, thank goodness. But my hair seems to be thinning all over. I am really concerned but continue to take the Elmiron for now because it seems to be the only IC drug that I can take right now. I stopped taking the Elavil after almost a week because it had an insomnia effect on me. The Elmiron is helping with the pain & frequency to where it's tolerable. I will continue to watch my head and hope that the hair loss slows up.

pattig89 · 03-07-2006, 03:10 PM

I just talked to my uro about starting the Elmiron instills and asked what the
side effects were to this kind of treatment and she said hair loss...NOt sure
if that is the same thing as taking the Elmiron orally but thought that would help
you...
Patti G.

hollipop · 03-07-2006, 03:27 PM

I agree with liznazz about the nutrition and other factors. After I delivered twins, my body was so anemic that my hair just fell out all over. It was so thin that I had to cut it off short. It was terrible. Then my next pregnancy, I made sure to take my vitamins and ate a lot of protein, and had no hair loss at all. Another example is my grandmother...she's always eaten a balanced meal and lots of protein, and when she went through chemo for breast cancer, she barely lost any hair at all. Amazing what nutrition can do for you. Now that I'm eating healthier because of the IC, I can tell how much healthier my hair/skin/body is now. It's almost as if IC was a good thing for me. I feel better than I have ever felt physically.

Pac168r · 03-11-2006, 04:28 PM

I had to stop Elmiron after 3 months due to hair loss. It started slow at first then increased as to there was no doubt that my hair was falling out. It thinned all over ,there was no one bald spot.

I just got back from Mexico and it was the first time ever that my scalped burned, it's been 3 months since I quit Elmiron.I no longer have hair loss but it hasn't filled in yet.

Since quitting Elmiron my mood has improved. I don't know if it was depression or the drug. I felt like a weight was lifted off my shoulders. I wasn't on it long enough to know if it would have helped my IC.

trytosmile · 03-12-2006, 03:26 AM

When I was on Elmiron I experienced hair loss. I had to be taken off the drug after 5 months use because of the side effects.

angelgirl · 03-13-2006, 01:09 PM

I am almost positive I am experiencing hair loss. I see tons of hair in the sink every time I style my hair, the texture is different, and my mother and sister can feel the difference. Ive only been on it a month and I dont think Im willing to see what will happen in three months. Im really bummed out. I'm taking cystoprotek and neurontin so maybe those are helping and not the elmiron. Ive felt pretty good for a week.
Of course, I expect my doc to say oh this is rare and it probably isnt really thinning like you think, but I know my hair!! I knew if the percentage was rare I'd be in it!
I gotta say too, so many on this board have described same thing, I wonder if it really isn't all that rare as they say!