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dawnfawn
05-07-2007, 04:47 AM
:welcome:
In light of the following facts why elmiron works at all is a mystery. any comments.

Pharmacology
Pentosan is believed to work by providing a protective coating to the damaged bladder wall. The critical flaw of the medication, however, is its exceptionally poor bioavailability when taken orally. Research presented late in 2005 by Alza Pharmaceuticals (Metabolism of [3H]pentosan polysulfate sodium (PPS) in healthy human volunteers. Xenobiotica. 2005 Aug;35(8):775-84.) demonstrates that more than 84% of the medication is excreted, intact, in feces without providing any beneficial effect. Their research found that only 6% was excreted through urine. Thus, it must be taken for several months for most patients to achieve some benefit. More recently, however, Elmiron has been studied as part of a "rescue instillation" which is placed directly in the bladder and can, perhaps, provide better effectiveness. C. Lowell Parsons has presented a research study which shows a 90% effectiveness in reducing the symptoms of IC patients by using this instillation.

amartaingirl
05-07-2007, 05:16 AM
i quit elmiron 7 weeks ago due to hair loss
and my hair is still falling out today.

so, it guess its still in my system

everything else is normal

GWENDOLYN
05-07-2007, 11:52 AM
I have been taking elmiron for 2 months and I use a shampoo called nioxin(sold only in salons), and so far I have not noticed increased hair loss.
I don't know for sure if the nioxin is why, but I use it as a preventative measure!

sami4
05-07-2007, 12:39 PM
That is exactly why a lot of Uro's are putting their patients on 6 Elmiron a day as a base dose instead of the usual 3.
I have been on Elmiron for a year and my hair actually seems thicker than it was before. I also carry a higher estrogen level and my theory that elmiron may block estrogen, hence an increase in androgens and possible hair problems is just my pet theory, but I wonder?
Sammi

vm
05-07-2007, 01:37 PM
My thoughts are that however little of this is actually "retained" in the bladder helps some of us immensely. It is a mystery, but one I am extremely grateful for. Very cool that so little of the med can still help some of us so much.

born2swim
05-07-2007, 03:11 PM
I am doing Elmiron 3x/day orally and the first week I had 3 instils. and then weekly after that for a few months (until the Elmiron works in my body). I have noticed a little bit of hair loss and tried Nioxin. I had an allergic response to it. They said your scalp may be red or tingle for a little. It was on fire and my neck/back/shoulders/arms were red and itched... for 3 days. It was terrible. I guess Nioxin is a no go for me. I think the instils help (the lidocane mostly, but Elmiron into the bladder is a good thing).

Mel53H
05-07-2007, 03:17 PM
Elmiron works for me. The only hair loss I have noticed is on my legs and my under arms. I have not shaved my legs for months and there still isn't much hair there. That goes for my underarms as well. I am not sure if it is the Elmiron that is doing this, but I'm not complaining. :smile tee

born2swim
05-08-2007, 06:36 AM
Mel53H, I noticed some shedding on my head, but the hair loss isn't all that noticeable to anyone else (except when wet during a hair cut the stylist saw it). Anyways... I hope my legs and arm pits experience hair loss! Talk about an unexpected benefit!!!

I wonder if the hypothyroidism you have affects your body hair...

RAS6
05-08-2007, 07:39 AM
I was one of those who had no relief after 8 months on Oral Elmiron and dealing with nasty side affects. By the time the Uro I was seeing thought of putting it in installs, my insurance wouldn't cover it. So I have moved on to a new Doc and trying new things. I am thankful that Elmiron has helped many people here though. Perhaps they will be able to make it more effective in the future.....