Success with out Elmiron!

[Renate]

I was wondering if anyone has had success controlling their symptoms without the use of Elmiron and with other Drugs or Alternative Medicine! The reason I ask I was just Diagnosed in April and the only Drug I am taking is Elmiron and I have been taking it for 6 weeks now and my hair is Falling out like crazy and it is already looking thin I have fine on the thin side hair already! I am thinking of quitting it the Doc who presribed me Elmiron thinks this is a stupid reason to stop a potentially beneficial drug but I am so sad and cry and don't want to sound Superficial but i don't want to lose all my hair! Any thouhgts! Thanks

[Briza]

I am one of many who have managed their symptoms without the use of Elmiron. There are many treatment options out there.

Others may feel differently, but if it were me, I'd consider hair loss an unacceptable side effect.

[Engtch29]

I've heard...

I've heard that, for some, the side effects go away with time. I'm not sure how long you're willing to wait and see or how bad it is.

Thinking of you.

[ICNDonna]

There are many treatment options available --- I had side effects and had to stop taking it and I'm doing fine.

Donna

[Renate]

Thank yo so much for the Reply's. I have decided today I am not moving forward with Elmiron and trying other things! I went to the hairdresser today and she said I don't want to hurt you feelings but your hair is falling out like crazy in the shampoo bowl! I started to cry I could not control myself and was Embarrassed.

[kadi]

I couldn't take Elmiron because it made my IC worse. Thanks to the treatment plan in my signature, I work fulltime, exercise, travel, have a pretty good quality of life. My IC is pretty severe without treatment, but with the treatments listed below, it's managed.

[earthlady]

I'm also one who didn't take Elmiron, and so far am doing well. I had been taking Benadryl, prelief, Surmontyl, Quercitin, and Hyaluronic Acid along with diet, epsom salts baths, ice packs and moist heat. I'm now only taking the Quercitin, using prelief and watching my diet. I haven't needed the other meds for a good while and am currently without symptoms.

[ginaaa22]

I also dont take elmiron. I started cystoprotek and it works better for me. It has less side effects. You might want to consider trying that if your afraid of going without elmiron. When I was first diagnosed I took my elmiron for about a year and it didnt help so for about 2 years I didnt take anything at all for my IC.

[wagamama]

Thank yo so much for the Reply's. I have decided today I am not moving forward with Elmiron and trying other things! I went to the hairdresser today and she said I don't want to hurt you feelings but your hair is falling out like crazy in the shampoo bowl! I started to cry I could not control myself and was Embarrassed.

The good news is that it should grow back. I am on Elmiron and have had no side effects, but some do and it's your body, so you need to decide how comfortable you are with the drug. There are alternatives.

As a side note, I love all of these doctors who say the hair loss is no big deal and that it's not a reason to stop taking Elmiron. Isn't there a multi-million dollar industry devoted to helping men restore lost hair?? I don't think they think it's no big deal!!

I do know a woman in my IC group who opted to just cut her hair short when she started losing it due to Elmiron, and the hair loss did stop after she had been on it for a while. But that was her choice; we all see thses things differently.

[Golden Girl]

I have had no problems whatsoever from the Elmiron. I normally dislike intensely taking perscription drugs, particulary ones that need to be taken on a long term basis. I decided to try Elmiron because nothing else I tried helped, and I tried lots of other things, including aloe vera. The aloe vera was way more expensive because insurance didn't cover any of it. The other people in my local IC support group though it made them much less food sensitive. That is certainly true for me, but it took a long time to gradually get better. I know now I should have taken Elmiron immediatly after diagnosis. My Urogyno, who is very open to alternative treatments and doesn't seem like a pill pusher type Dr. has said he has only seen hair loss twice at the most. No change in hair for me or anyone else I've ever meet on Elmiron. (PS My hair is overly thick now, but it has always been that way.)