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  • Elmiron and hair issues

    Ok, let me preface this by saying I am not bald! Anyway, although Elmiron has caused a little hair loss, the real issue I am noticing is that my hair texture is changing. My hair is becoming increasingly brittle and breaking off very easily. I have been on this medication a month and have already noticed a big improvement in my symptoms so I am determined to keep taking it. I guess my question would be if any other people have experienced this and if they have, what treatments/remedies helped combat the dryness? Perhaps shampoos, home remedies, hot oil treatments...any suggestions would be appreciated!

    Thanks!

    Lauren

  • #2
    The description for the hair loss that is associated with Elmiron is alopecia(sp?) which is hair loss in one spot. Not breaking or changing of texture. In one month your hair should have grown approximately 1/4 of and inch, so your hair beyond the root is known as old growth. Nothing you take will change that portion of your hair. The amount of oil your scalp is producing could be changing and stress from IC can cause things like that. You might try a good conditioner and try not to wash your hair as often.

    I would say don't stop your Elmiron and I am glad that you are seeing help with it!!

    Take care,
    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      Thanks for the response. You make a valid point about my hair problems not being related to the Elmiron. I actually saw my stylist today and he made me feel a little better about this situation....I tend to be a hypochondriac and immediately experience every side effect for medications! I am definitely NOT stopping the Elmiron, I already feel better and it hasn't even been a month. Last night I actually slept the entire time without having to wake up to go to the bathroom.

      Lauren

      Comment


      • #4
        Haha! I think we all get a bit freaked out by medication side effects. Years ago my Grandmother had one of those pill books that tell you all about medications, even those extremely rare side effects. I was looking at it one day and she told me to take that "stupid book" with me, she said that it had scared the witts out of her!! I have to agree, sometimes we pass right over the part that says "rare" as in 1 in a million! It is good to watch for side effects but I am glad that it seems you were wrong on this one and you are having good results.

        Sandra
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment


        • #5
          Hi Lauren,

          I have had alot of breakage myself this winter and discovered with my hairstylists help that too much protein in conditioners makes it worse. (This first started after a keratin treatment.) The tough thing is these days almost every conditioner has protein in it even when it says moisturizing. I switched to an all natural shampoo and protein free conditioner made by jessicurl and the breakage is MUCH better. I only use a protein conditioner now every week or two. This may not be your case but thought I'd mention it as something to look into.
          Cindi


          Gelnique for frequency/urgency - works great
          Macrobid after sex
          Prilosec, continuous birth control pills
          synthroid .088mg, mucinex-d, restasis

          Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

          Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

          IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
          AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
          AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
          Great treatment flowchart on page 19 of the pdf

          Comment


          • #6
            lauren
            my hairstylist was mentioning the nioxin brand of haircare to someone with the same concerns the other day.i just looked at their website and their products claim toimprove texture,prevent brittleness,breakage or oilyness.their product is also supposed to prevent the hair from falling out.it looks like it would be expensive but totally worth it considering something for my hair myself as the elmiron is also causing me to shed alot plus stress.ive also had success in the past with v05 hot oil treatments prior to IC.
            Newly IC diagnosed as of February 2011.

            Medications I'm on that seem to work:
            Zoloft- one once a day
            Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

            Failed Meds:
            Elmiron-after 4 months,digestive side effects got to be too much
            tramadol-allergic
            DMSO treatments(5-6)
            probiotics

            THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
            AROMATHERAPY-candles,incense
            Village Naturals Aches and Pains Peppermint Bath Salts
            Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

            ACUPUNCTURE/HERBS
            Significant pain relief so far.

            MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

            Add me on facebook Angela Hasic

            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            Lord, make me an instrument of your peace;
            where there is hatred, let me sow love;
            when there is injury, pardon;
            where there is doubt, faith;
            where there is despair, hope;
            where there is darkness, light;
            and where there is sadness, joy.
            Grant that I may not so much seek
            to be consoled as to console;
            to be understood, as to understand,
            to be loved as to love;
            for it is in giving that we receive,
            it is in pardoning that we are pardoned,
            and it is in dying [to ourselves] that we are born to eternal life.

            Comment


            • #7
              Thanks for the replies ladies! Thats so funny because I bought the Nioxin shampoo but my stylist says its harsh on hair and would dry it out even further...lol, who knows what to believe! Anyway, he convinced me to start using the Aveda dry remedy shampoo and conditioner..in the mean time he cut a lot of dead and brittle ends off of my hair so I am already feeling better. Sometimes its hard to tell if my side effects are actually occuring or if I am just obsessing On a side note...I seem to be experiencing more bruising than usual. I literally have huge bruises on my legs and I don't even remember bumping into things. Is that a possible side effect of Elmiron?

              Comment


              • #8
                I just started Elmiron a week ago, and I am already terrified of losing my hair!!
                Doe anyine know the actual percentage of people who have this side affect? I have only been on thi drug a week so cant really tell if it helping yet, but I have a feeling it will!!!!!!!!! I am hopeful. The only side effect that I have had is BRUISING, but I can live with that...
                28 yrs old,

                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 4 years now!) HOT showers!!!

                Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                Me in my graduation gown!

                Comment


                • #9
                  It is a very small percentage of people that lose their hair only 4%. If you have the loss it will usually show up in the first month and be in one spot. Your hair will grow back if you stop the elmiron. It is a mild blood thinner which might account for the bruising but I think you should let you Dr know.

                  I hope you have success with the elmiron!
                  Link to the patient information, everything from What is IC? to Disability
                  http://www.ic-network.com/patientlinks.html

                  American Urological Association Clinical Guideline
                  Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                  http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                  Comment

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