Latest Blog Article: New Bladder Pain Treatment In Development - IC Clinical Trial Seeks Women with Moderate To Severe Bladder Pain
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  1. #1
    ICN Member intensepnchick's Avatar
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    Nov 2011
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    South Carolina
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    Elmiron does make your hair fall out

    I was taking Elmiron since December 2011. just stopped taking it in March. It obviously wasn't helping and it was making my hair fall out. Just wanted to let IC forum know that I believe the hair loss side effect of Elmiron is more common that doctors will lead you to believe. They told me that it is rare and they haven't seen any patients with hair loss. I've seen some on here and it happened to me. Here is the proof. I haven't seen the back. my hairdresser is looking tomorrow and will let me know if there are anymore patches. I started taking Biotin in February to counter the possible side effect but it hasn't helped. Sooo depressing.
    Attached Images Attached Images
    Diagnosed with: Endometriosis 2010 Interstitial Cystitis and Pelvic Floor Dysfunction 2011

    SURGERIES:
    Tubal ligation 3/2010 found endo
    Diagnostic Lap. 2011. Found intestinal scar tissue
    Cystoscopy 2012- nothing found
    Hydrodystention 6/2012 - found that the walls of my bladder bleed and confirmed IC
    Hysterectomy 7/19/2012- more scar tissue around my intestines and more endo lesions. Helped with the period pain. No more periods.

    I am in constant pain. No one around me understands the daily fight I have just to get out of bed.

  2. #2
    ICN Member intensepnchick's Avatar
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    P.S. I am only 29 years old....

  3. #3
    ICN Member
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    I believe you my eye lashes have fallen out and the hair on my head is half the thickness it was last fall.

    I mentioned this to my doctor and he asked me why I thought it was Elmeiron...I said what else could it be, he just walked away from me.

  4. #4
    Support Leader kadi's Avatar
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    I'm not doubting you, but I do want to point out to new patients considering Elmiron, that it is not a side effect that everyone or even most patients get. For the patients it does work for, it can be an absolute miracle and it's just about the only medication from which I consistently hear that patients get back the ability to eat more normally.

    Male pattern baldness can begin in the twenties, it did for my dad (no Elmiron!) - here's an article on genetics on it. It seems to be mostly inherited from the mom's side of the family. So for guys, look at that also... I would also imagine the stress of IC could have an effect on it starting earlier if there's a genetic link already in the family. Just another factor to look at, if the Elmiron is working otherwise...
    http://www.webmd.com/skin-problems-a...aldness-on-mom

    For new patients I recommend cleaning a hair brush, using it for a week before taking the Elmiron and saving the hair collected into a ziplock bag. Then you can compare your normal hair loss with hair loss while on Elmiron...

    What I'm trying to say is to new patients, please don't be scared to try Elmiron, especially if your IC is significantly disrupting your life and damaging your quality of life and relationships. Elmiron can cause hair loss, but it's usually minor (not like chemo), it does not occur very often, if it does happen - it usually stops when you stop the medicine, and it's too valuable a treatment to rule out.
    Kadi

    -------------------------------------------------------------
    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 60mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic to prevent UTI infections from 2x daily catheter use
    -Colace & Senna to treat chronic constipation from meds
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

  5. #5
    ICN Member
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    Intensepnchick I am so sorry Elmiorn seems to be causing loss of hair. My Elmiron did not kick in until at four months. Many say it takes 6 months. I did lose hair (spotty) so I cut it all off and wore a wig for about six months or more. Anyway The Elmiron worked for me as well as the diet and pain meds to get me through terrible flares. I am able to sleep through the night now instead of getting up once an hour at the begining. No it does not work for all. I am just saying it worked for me and took me to a comfortable place with my IC. My hair grew back in and is gray and may I say very pretty. I use to dye it auburn but would never use a dye now as I feel it might be like a acid to my bladder. I want so much for you to have relief. I have no good advice but can only share what happened to me. Sending warm hugs, Ziggy

  6. #6
    ICN Member Jinny Jean's Avatar
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    Sicamous, British Columbia, Canada
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    I had a bit of hair loss for sure in the beginning too, so I do believe you that it happends!!!!. Only I could tell thankgoodness, but it was still a little nerve racking whenever I would take a shower and comb my hair. It felt like I was covered in shedding hair! It lasted for about 3 months and then stopped completley. I don't have any hair come out now more than is normal; and my hair is very long and just fine An increased shedding seems to be fairly common? I have spoken to a few others who have had an increased shedding in the brush and the shower, but nothing crazy like it coming out in handfuls or anything. Thankfully mine stopped after awhile. Elmiron has been completley worth it to me though, even if my hair was still coming out more than normal I think I would still take it no matter what. It is the only thing I take for IC and it makes an incredible difference in my normalcy level

    I really do hope you feel better soon, and Im sorry you have had troubles with your hair!

    Jenn
    25 yrs old,

    Flaring: 20-25 x's, raw feeling in my urethra just before urinating.

    On a regular day: My frequency is normal 5-8 x's

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 14 months now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil and PROBIOTICS!



    Me in my graduation gown!


  7. #7
    ICN Member
    Join Date
    Mar 2010
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    103
    Quote Originally Posted by kadi View Post
    I'm not doubting you, but I do want to point out to new patients considering Elmiron, that it is not a side effect that everyone or even most patients get. For the patients it does work for, it can be an absolute miracle and it's just about the only medication from which I consistently hear that patients get back the ability to eat more normally.

    Male pattern baldness can begin in the twenties, it did for my dad (no Elmiron!) - here's an article on genetics on it. It seems to be mostly inherited from the mom's side of the family. So for guys, look at that also... I would also imagine the stress of IC could have an effect on it starting earlier if there's a genetic link already in the family. Just another factor to look at, if the Elmiron is working otherwise...
    http://www.webmd.com/skin-problems-a...aldness-on-mom

    For new patients I recommend cleaning a hair brush, using it for a week before taking the Elmiron and saving the hair collected into a ziplock bag. Then you can compare your normal hair loss with hair loss while on Elmiron...

    What I'm trying to say is to new patients, please don't be scared to try Elmiron, especially if your IC is significantly disrupting your life and damaging your quality of life and relationships. Elmiron can cause hair loss, but it's usually minor (not like chemo), it does not occur very often, if it does happen - it usually stops when you stop the medicine, and it's too valuable a treatment to rule out.

    I agree with Kadi. People should not be scared to try Elmiron. I have been on it for 2 years now. Most days, I have no IC symptoms and I can eat and drink whatever I want.

    I have always lost a lot of hair. I clog the shower drain pretty regularly. But there's been no increase since Elmiron. I also color my hair and chemically straighten it. I was nervous the first time I straightened while on Elmiron but it didn't cause an increase in hair loss.

    Elmiron is the only medication I take daily. I have prescriptions for atarax but I don't think it makes much of a difference but I usually take it too. I have a prescription for elavil but only take it during flares. It helps me to sleep but I don't need it every day.

  8. #8
    ICN Member Jinny Jean's Avatar
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    Apr 2011
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    Sicamous, British Columbia, Canada
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    Yes for sure, I agree, people should definatley NOT be scared to take elmiron. I was at first I can definatley say that, the idea of being on a medication my whole life scared me a bit, but I can honestly say that elmiron is the only thing that works really well for my IC and gives me back the kind of life that I had before. It is the best thing, and I am sooo happy now that I got over my fear and accepted my condition enough to go ahead and try elmiron. For the people that it does work for it is incredible I am very thankful for it every day.

    Jenn
    25 yrs old,

    Flaring: 20-25 x's, raw feeling in my urethra just before urinating.

    On a regular day: My frequency is normal 5-8 x's

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 14 months now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil and PROBIOTICS!



    Me in my graduation gown!


  9. #9
    ICN Member mary124's Avatar
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    Hutto, Texas (30 miles or so outside of Austin)
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    4,164
    I have been on Elmiron since 1997 and I have no hair loss. The only thing that kicks up now and then is my IBS and that is managed with medication. With all the meds that both my husband and I take I stopped looking at the side effects a long time ago as that started to scare me but my husband and everyone else I know told me that it happens to a small percentage. Like Kadi said you shouldn't be afraid to try it, if you start having these SE than by all means stop the medication.

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