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  1. #1
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    elmiron vs. cystoprotek

    hello all
    I am now contemplating whether elmiron or cystoprotek is better. I am not sure which one is the better option. I started the cystoprotek, along with 20mg hydroxine HCL, pyridium (as needed), Elavil, and percocet (as needed for pain)...I am not sure if I should add in the elmiron with the cystoprotek or if I should wait and see how the cystoprotek works first. I am just worried about the side effects of the emliron....any one have any good results with either one or both please ler me know you ideas. I am going to increase the hydrxine HCL to 30 mg soon.

    thanks
    jackie

  2. #2
    ICN Member amartaingirl's Avatar
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    cystoprotek

    did you just start the cystoprotek?
    i saw results in like 3 days

    elmiron made my hair fall out
    not all of it
    not in one spot
    just an overall thinning

    my personal theory..some others have agreed
    if you are the skinny girl in the office..who is always cold
    you will have hair loss

    the hair loss was just not worth it for me.
    never again
    $100 for the stupid pills .. i threw them out.
    i should have mailed them to one of you ladies..lol
    same you a few bucks

    hair loss will stop...it took exactly 62 days after being off elmiron to completely stop falling.

    it has not yet begun to grow back...i stopped counting, but i probably closed to day 90 now.


    dont get me wrong, elmiron helped an all
    i could even drink beer while i was on it
    but i just couldnt handle the hair loss..
    if only i was so vain...lol

    elmiron has helped a lot of people
    Quit ELMIRON due to hair loss
    Cystoprotek ROCKS!

    find me on FACEBOOK -
    search my email amartaingirl@aol.com

    Current Meds:
    AM Cystoprotek & ATARAX 50mg
    Dinner CYSTOPROTEK
    PM Elavil 25mg


  3. #3
    Angel watching over us born2swim's Avatar
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    I did get some shedding the first couple of weeks on Elmiron, which scared me... but that stopped and my hair is actually looking better (my whisy curly hairs that I have always had are getting longer and thicker). I don't know why, but they are. So... the initial hair thinning was scary, but it wasn't permanent. I do feel like my stomach is irritated and I take Prevacid at night to keep it calm. I don't know what is causing the upset stomach (Elmiron, Lexapro, Atarax, Ultram...)
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [

  4. #4
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    Quote Originally Posted by mamacox6977 View Post
    hello all
    I am now contemplating whether elmiron or cystoprotek is better. I am not sure which one is the better option. I started the cystoprotek, along with 20mg hydroxine HCL, pyridium (as needed), Elavil, and percocet (as needed for pain)...I am not sure if I should add in the elmiron with the cystoprotek or if I should wait and see how the cystoprotek works first. I am just worried about the side effects of the emliron....any one have any good results with either one or both please ler me know you ideas. I am going to increase the hydrxine HCL to 30 mg soon.

    thanks
    jackie
    Hey Jackie,

    My understanding is that these are not really similar. Cystoprotek is a nutritional support that reduces inflammation among other things. Elmiron is like a candy coating on the bladder (although studies show that most is excreted in feces, so efficacy has been questionable--seems like a lot of folks get it to work here!) I have tried Cystoprotek 2x, no luck. But then again, I think IC comes in many shapes and sizes. I think mine is more about nerve/pain pathways than bladder reactions per se.

  5. #5
    ICN Member mom_in_ma's Avatar
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    I've tried cystoprotek and flared from it. There's something in it that doesn't agree with me. Then again, elmiron didn't agree with me...nor do most of the typical drugs. So...I'm not the best person to ask.
    mom_in_ma

  6. #6
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    I stopped the elmiron about a month ago due to the fear of the long term effects it would have and started taking the ingrediants that cystoprotek have and it's a lot of pills a day but I think I feel much better and it's much safer in my internal organs I'm sure.

  7. #7
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    I have had cysto for 3 months and have not taken it. So thank you for the good info as I think I will give it a try. Elmiron didn't work out for me.
    BBB - Diagnosed with Moderate/Severe IC (age 12), Severe PFD and V V (age 21), IBS (from birth) & Gastroparesis (age 42)

  8. #8
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    I am just wondering if you have heard of any documented long term effects from elmiron. I am taking it 3x's a day by mouth, it makes me nervous to think of being on it for a long time.

  9. #9
    ICN Member an0bgobeloba's Avatar
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    if you can afford both, that's what i would recommend trying. i take both now but hope to be off the cystoprotek soon if the elmiron is working. i didn't realize how much the cystoprotek was helping until i stopped taking it! ouch!!! i've tried twice now and without success. i started taking the elmiron because daily the cystoprotek isn't helping enough...i want to feel better than this! i haven't had any side effects from elmiron. most people don't, but it's only the ones that do that we hear from. but everyone is different and there's no way to know until you try it. good luck and let us know your progress!!
    Current: -pelvic floor therapy, -weekly uracyst instills

  10. #10
    Angel watching over us born2swim's Avatar
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    Quote Originally Posted by sgoodrow View Post
    I am just wondering if you have heard of any documented long term effects from elmiron. I am taking it 3x's a day by mouth, it makes me nervous to think of being on it for a long time.
    I haven't heard of major problems with Elmiron. The only stats that I have heard are these:

    4% of patients will experience some hair loss (and it ranges to a bit of shedding/thinning to actual bald patches). I lost a bit (you could see my scalp in some patches, but it is growing back well since stopping it). I know others that have bald spots but Elmiron helps so much that they life with the alopecia. Nioxin is something people use, but I'm allergic to it.

    40% of patients get noticible/significant improvement after taking Elmiron (and you must give it ample time... up to 1-2 years for some people).

    Liver enzymes may be elevated in some patients and if they are high enough or stay elevated, Elmiron must be stopped. My uro did bloodwork every 3-6 months and around 9 months, we found my enzymes to be up... and with hair loss that was getting worse and no improvement with my IC, we stopped it. Enzymes were back to normal a month later.
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [

  11. #11
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    Jackie,

    I was diagnosed in mid-January and decided to start Cystoprotek in mid-February. I also started DH aloe vera around that time too. Since then, I've noticed a significant improvement in my symptoms- mainly frequency and burning, as I've not had a lot of pain. But to give you an example, at it's worst my frequency was about every 30-45 minutes. Now, I commonly go 2-3 hours before needing to go. My urologist thinks we should continue this route as long as I'm continuing to improve. I opted not to try Elmiron first to see if I could get relief without it. I'm hopeful that I will continue to improve, as it takes 4-months or so to get full benefit from the Cystoprotek.

    Goodluck with your decision! Hopefully you have a good doctor that can direct and advise you!

    Kelley

  12. #12
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    Cystoprotek

    I've had a bottle of Cystoprotek for several months--but I'm afraid to try it! I'm afraid it will make me flare! I'd like to hear from people who have tried it--did it work for you? If it would help me, I should be taking it, but I'm scared!

  13. #13
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    I ran out last week and had a bad flare. Coincidence??? I believe it is helping me. Kim

  14. #14
    ICN Member amartaingirl's Avatar
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    helped

    helped me a great deal

    so i think you should try it
    it if flares you...then stop...its just a flare...so it will pass

    Quit ELMIRON due to hair loss
    Cystoprotek ROCKS!

    find me on FACEBOOK -
    search my email amartaingirl@aol.com

    Current Meds:
    AM Cystoprotek & ATARAX 50mg
    Dinner CYSTOPROTEK
    PM Elavil 25mg


  15. #15
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    As you see from my post above, Cystoprotek has definitely helped me. I know even more now, because we've started trying for a baby and I've had to go off of it. It took several weeks/month for me to notice a difference, but I definitely have.

    Good-luck, and as one of the previous posters mentioned, if it causes a flare, the flare will end at some point. For me it was worth a shot!!

    But, it does take up to 4-6 months to reach the full effect. You may not notice improvement immediately, as with Elmiron, but keep with it (assuming it doesn't bother you).

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