questions about hair loss

[jeanniebug]

I have been on Elmiron for 5 1/2 months. So far I haven't notice any improvemnt with the pain. I also take Prelief tabs. But, I am staying on it because my doctor said it could take up to a year to start helping. I had read than hair loss can be a side effect of Elmiron. I had counted myself lucky because I didn't notice this happening to me...until recently! It seems that I have GOBS of hair coming out in the shower. I don't have any bald spots...yet....but this is really freaking me out! eek Is this a permanent problem after taking Elmiron? I am seeing a new uro in 2 weeks and will also be discussing this with him. Thanks!!

[vm]

I doubt it is from the Elmiron since you hadn't noticed it before, but I suppose it could be. The hair loss is not permanent - it is reversible when you stop taking the drug. :)

[ICB]

Elmiron can take 3 months to a year to work. You stated that you have not seen any improvement. Are you taking any other medication, in addition to Elmiron? The best way to treat IC is with multi-modal (more than one) therapy. Moreover, has your doctor checked to see if you have Pelvic Floor Dysfunction (PFD)? This condition affects 70% of IC patients and can increase degree of symptoms.

An alternative to Elmiron is CystoProtek. It is a dietary supplement and helps many IC patients. It can be taken with food and does NOT cause hair loss. You can find information on CystoProtek at www.algonot.com (http://www.algonot.com) or call 1-800-254-6668.

I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes,

ICB

[Teri]

Jeannie~I was on elmiron for a year. I did loose ALOT of hair but as soon as I stopped taking the medication (it didn"t work for me) my hair came back blink

[yorkyloverx3]

I am glad someone else asked about the side effect of the loss of hair. I am not loosing big hunks at a time but do notice more in the shower or on the counter when I brush. My biggest problem is my hair is getting very thin, especially on top, but all over too.
:confused: Anyone else have this problem?
I know stopping the elmiron will reverse this but I am in a major flare up now. :mad:
Has anyone just used the elmiron the instillation therapy and not taken it by mouth? Just wondering if that would have the same effect. I was taking 6 pills of 100 mg. But now just take 4 pills a day. 2 in the am and 2 at bedtime.
Another question........I have been getting a bad headache the next morning after I having an instillation. Is this just me (cause I get so uptight about have to go and be catherized) There should not be anything in the elmiron instillation giving me a headache if I have been taking it by mouth for 3 years. I don't see my ur until April 8th. :confused: Just wondering......or am I weird?
Denise

[tigger2]

I have been on elmiron for a year now, at first I was not loosing any hair, but when I started my DMSO treatments the first time around my hair fell out in chunks, I ended up with two bald spots in the front of my hair which now has thin baby hair, but i still loose a lot of hair in the shower and when i brush it. So you are not crazy.

After going through the treatments the next day I would be very sick, I would have fevers, sever abdominal pain, and I would be nausous all day, and it would last for 2-3 days afterwards. I also notice my vision going blurrier after each treatment. Has anyone ever experienced that? My Dr. told me that there are no side effects from the instilations, but i know what I fell, and I am not crazy.