To Take Elmiron or Not?

[emily22]

I was diagnosed last week as having mild IC. I was given Elmiron and took it for 3 days but stopped because I've been so scared about hair loss. My pain is not that bad, usually just at night. This has been going on since June. I believe the pain has a direct link to stress. When i was out of school for christmas break my pain completly stopped for 2 months. My uro said that he believes the elmiron can get rid of my ic and i won't have to take it my whole life, bc my case is so mild. I really am torn between taking the elmiron or not. On one side I would like to start treating my ic and not let it get worse but I really am worried about the hair loss. Since Friday I've cut out tomatos, citrus fruits, coffee, tea and soda. I was thinking that I'd see if the diet helps and if not than I will go back on the Elmiron. Any suggestions? Thank you!!!

[leelee88]

First, I highly recommend the IC diet and staying away from all the foods on the bad list of the diet..
Now about the Elmiron if you have just been Dx with IC and only have a mild case, then that should give you even a more reason to want to try Elmiron. Please know though if you have been Dx with IC there is NO cure. You can research this all you want.. But with early treatment, I do believe you have a better chance at treating it.. So there would be no harm in giving the Elmiron a chance and if the hair does begin to fall out. You can stop it. It should stop falling out soon after you stop taking the Elmiron.

[SandyRN]

I have to tell you that Elmiron doesn't "CURE" IC but it can help to control it. Your doctor misspoke when he said that just because you have a mild case the Elmiron will 'get rid of it'....there is no cure for IC, BUT, that being said, Elmiron, along with meds like heparin that coat the bladder lining can help heal some of the eroded tissue lining but there is no cure, period. I'm glad you have a mild case. Like leelee said I would do the IC diet. As for hair loss, well, this does happen in some people but not everyone loses their hair, and nobody I know of has ever gone completely bald. If you're going to lose any hair it is usually not that noticable except in some cases. It's like any other drug, there are always side effects but that does not mean that side effect will happen to you. It's up to you if you want to continue to take it, but if you notice your hair is thinning you can always stop it and find some other form of treatment.

Please do not be fooled by your doctor that there is a cure for IC because as of right now there isn't, unfortunately.

[llwd]

I've been taking Elmiron for 3 months and have had no side effects, including no hair loss. Don't let potential side effects stop you from taking a medicine that could help.

Lori

[Babs RN]

Elmiron is so individual. I never experienced a negative side effect, but it didn't help my IC. It is ultimately your choice, but I would go for it if you are armed with info.

Hugs,
Barb:hi:

[ICNDonna]

Only a very tiny percentage of people taking elmiron have any hair loss. I suggest you take a clean hair brush and brush your hair, then put the hair from the brush into a plastic bag and save it. That way you have a comparison if you feel you might be losing some hair.

And there is no known cure for IC! IC is usually controllable with diet and treatment, but so far no cure has been found.

Donna

[emily22]

I should have used a better word than get "rid" of the ic... the dr. just meant that he thinks i will eventually be able to go off the medicine and it won't bother me any more (go into remission). thanks for all the advice! im going to start taking the elmiron and keep up with the ic diet

[Agape]

My hair has thinned since being on Elmiron. However, it was thinning before too because of hormones just not as much. I hate that my hair has thinned, but hate worse having pain and discomfort with my bladder, so I continue with the Elmiron. I am praying for the day when I don't have to take as much as I do now and hope that will help with side effects also.

[DreamChaser]

Is it true you have to take Elmiron for at least 3 months before you see any benfits?

[sunfoodgirl]

Just a little comfort,

I've been taking Elmiron for almost five years with no side effects at all that I am aware of. Most of the doctors I've spoken with haven't seen people lose hair often, but one who did, told me that when his patient stopped the Elmiron and it began growing immediately. I've see Dr. Parsins at UCSD and he is a huge supporter of Elmiron (unfortunately not of narcotics, but then, his bladder isn't on fire *wink*). And now I've seen a thousand docs, some who went to school with Dr. Parsins and they all support it as well. I was told that one of the first doses of Elmiron given was 30 pills in a day! And that person had no side effects. It took a few months of Elmiron every day on an empty stomach with a full glass of water for it to begin working, but it really helped me. I feel like my IC has progressed or perhaps the Elmiron isn't working anymore, some docs say it stops after 4 years, others say thats hogwash; we just think it stops cuz when we feel better we stop taking it. I don;t know. But I definitely say its worth a shot :)

love and light

Shelley:pray:

[noirjezza]

I was started in Elimiron 3 years ago and really has changed my life! Although my case of IC is mild too- I now can eat, drink pretty much what I want (minimal coffee and no soda pop). I also can tell when I'm not going to feel well and ward off flares (most the time). I think that only about 4% of people on to Elimiron lose their hair, and it is reversible. I know that it would mean a lot you if it happened... but at least you gave it a shot.