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Elmiron//Bad hair/side effect????

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  • Elmiron//Bad hair/side effect????

    Hello ladies. I was just diagnosed in February and have been on Elmiron since then I read the side effects and I think that it is really messing with my hair. I have not had any of the other side effects. My hair has become very brittle and is splitting terribly. This has to be the meds..
    Has anyone had this happen. Who knows maybe this is the time for me to finally cut my hair short...... Looking forward to your replies..


    Sara

  • #2
    Sara,
    Sorry you're having problems with Elmiron and your hair. I've been on it since Nov 2006. I still have really thick hair like I did before. I see a lot of hair come out in my brush but I think that's pretty much the same as always and I don't notice any difference in how much hair I have or the texture. I haven't really noticed any help from it either.

    I know there are some members on the board who have had some problems with hair loss and stopped it. I'm sure they will chime in. I hate the stuff because it's so expensive but I'm afraid to stop it because I'm worried it is helping and I won't realize it until I stop it!
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      Hi Sara,

      I was on Elmiron for over a year when I noticed a change in my hair. My usually long, curly hair was becoming brittle. My hair began thinning noticably.....I stopped the Elmiron and went into a flare within 2 weeks...it was HORRIBLE.......BACK to the Elmiron.....I decided that I was better off taking the Elmiron than worrying about my hair. I got my hair cut short and also was fitted for a wig.

      Some people believe the hair thinning is caused by the stress of having this illness, and some people don't experience any side effects from the Elmiron.

      Speak to your doctor about your concerns!

      Take care and feel GOOD!!

      BETH
      IC diagnosis 1999
      Meds: Elmiron
      hydroxyzine hcl
      DMSO as needed
      valium as needed
      librax 3x day

      TENS therapy



      Thanks to all on the boards - YOU have helped more than I can say!



      A person's true wealth is the good he or she does in the world.

      Comment


      • #4
        My hair was really thinning after about eight months on Elmiron. It also caused breakouts on my face and in my hairline along the temple area. Basically, I was losing so much hair, especially in my bang area, that I stopped taking it. I am going to try instilling it and see if that helps me with the hair loss problem
        FOR THE RECORD: IT TAKES SIX WEEKS FOR HAIRLOSS TO STOP AFTER YOU STOP TAKING THE ELMIRON. (I put that in big letters in case someone is doing a search in the future, then it will stick out ) There was another member on this forum that started losing hair badly at the same time as me. We both kept track of the day we stopped it. Both of us went to the dermatologist. Her doc. said it could take up to six weeks. Mine basically said nothing except sorry you have this problem, now give me my hundred bucks . Gotta love those guys with the great bedside manner.
        I noticed textural changes and split ends as well. However, I had my hair straightened with a chemical straightener about four to six weeks before I noticed the texture thing. I really attribute the splitting and brittle hair to the straightener. I hope all this helps. Feel free to PM me for further info.


        Blessings and Hope, Vicki
        Blessings and Hope

        Current Meds.
        OFF MY MEDS
        Vivelle Dot: .10 changed every 72 hours
        Compoounded Progesterone 25mg/night

        Current Supplements
        Hydroeye: 2 pills AM

        Diagnosed
        1995: Endometriosis
        1998: Interstitial Cystitis
        2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
        2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
        2012: Laparoscopic Removal of Adhesions and Staples

        Comment


        • #5
          Well... dry brittle hair can be caused by many things. As the hair grows out, it is the environment that affects it. If it is by the root, your diet or meds could be affecting it. I wouldn't say Elmiron is the culprit off the bat until you examine your diet. Since the IC diet is so terrible, you may be deficient in some helpful nutrients for your hair...
          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

          [

          Comment


          • #6
            It may be the Elmiron

            I've been taking Elmiron consistantly for over a year and my hair has changed. I still have thick hair but it is much thinner around my temples. Also I lose so much of it during washing and styling it. Hair is all over the shower, floor and sink. My hair is also more brittle and dry. I too, like many others, am too scared to stop taking it. Hope this helps, Rachann
            When life hands you lemons make lemonade. But when life hands you a load of crap, don't make anything. Trust me on this one.

            Diagnosed in 2001
            Meds
            Elmiron, Elavil, Atarax, Ditropan, Prosed DS, Hydracodone when needed

            Comment


            • #7
              yes

              dull lifeless hair was the step RIGHT BEFORE it started to fall out.
              it happened about 3 months into the elmiron.

              it started to fall out..when it was dry...you know..just running my fingers threw it.
              but it was in the shower...that i could no longer deny it..
              it was comming out.

              i stopped the elmiron.
              and it took exactly 62 days after being off elmiron to STop falling out.

              it has not grown back in yet..its about day 95 or so.

              i didn't all fall out or anything
              not just one spot.
              more or less an overall thinning

              i am having much luck w/ Cystoprotek
              Quit ELMIRON due to hair loss
              Cystoprotek ROCKS!

              find me on FACEBOOK -
              search my email [email protected]

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

              Comment


              • #8
                It's weird, but I noticed the same thing. My hair was much more dry and brittle. It didn't actually split and most of my hair loss occurred right in the beginning I think. After 10 months without getting better I stopped taking it. I might go back on though because I don't know if I gave it long enough.
                When I did stop, my hair felt soft again within a couple days - very strange.

                Comment


                • #9
                  Like someone else said, I noticed the dry and brittle stage for a while, then it began falling out. I had been on it for five months when it began falling out - just an overall thinning over my whole head with the area around my forehead the worst. I have lost over fifty percent of my hair.
                  However, if the Elmiron had worked for me, I wouldn't have cared. I would have stayed on it anyway. It didn't however, and I had other bad side effects, so I got off it. My hair has yet to grow back, five months later. (and yes, as someone said, it continued to fall out for about 7 weeks after I stopped the drug)

                  Comment


                  • #10
                    This is not good news. I have already lost so much hair in the last 6 years due to age/genetics/stress..I cannot afford to lose one more hair off of my head! I think i only have like, 6 left total

                    I've always felt that my hair is my crowning glory..my mama used to tell me that! I know there are much worse things in life but I love having long hair and i already lose tons everyday!

                    I just started Elmiron..nothing to report yet other than i get very crampy after meals even with Prelief and I am more headachey than usual.
                    Mimi~

                    Currently battling:
                    Migraines
                    IC
                    Panic attacks/Anxiety Disorder


                    Current Treatments:
                    Pain Meds and Anxiety Meds
                    Gentle Physical Therapy
                    Yoga
                    Heating Pad~my best friend
                    Lots of hot baths w/ Epsom Salts & Baking Soda
                    Tens Unit
                    Prayer

                    Comment


                    • #11
                      I have been on Elmiron since 1997- have had no side effects including the losing hair. So I don't know where you ladies are standing at with the hair issue, sorry I can't help. good luck in your decision.

                      Comment


                      • #12
                        Uro being resistant about Elmiron

                        I wonder if it's purely the risk of side effects that's making my uro resistant to giving me Elmiron now and wants me to keep trying the Enablex. I called his office today and said I'd like to start on the Elmiron ASAP. I ended up talking to his nurse who was clearly resistant, told me to double the Enablex dose to 15mg. She also mentioned the possibility of DMSO and I told her I am not doing that. Upon my insistance, she said she'd talk to the Dr. about the Elmiron and I did tell her that I was aware of the risk of side effects. Is this anti-Elmiron attitude common and/or sth to be worried about?

                        Has anyone here been helped by Enablex at all??

                        I also started on glucosamine yesterday until my Cystoprotek gets in. Not sure what it'll do.

                        I already made an appointment with a uro in the city to which I'll be moving in a month.
                        Spring/summer 2009 - diagnosed with H Pylori and vitamin D deficiency (both treated successfully), hormonal imbalance, and food allergies
                        July 2007 - PFD confirmed by physical therapist
                        June 2007 - start of IC symptoms.
                        May 2007 - start of significant IBS symptoms
                        Summer 2005 - migraines became chronic

                        Conditions: IC, IBS, PFD, migraines (currently under control), back problems

                        Current meds: bio-identical hormone creams, vitamin D, zinc, Captomer, magnesium oil, D-Mannose, FemDophilus, magnesium ascorbate

                        Other treatments: massage, mind-body healing

                        Comment


                        • #13
                          Wow, this is interesting. My GYN thinks Elmiron is the best drug for IC (I just started it.) I am wondering what side effects he is concerned about? Do you happen to know?

                          Good luck!
                          Mimi~

                          Currently battling:
                          Migraines
                          IC
                          Panic attacks/Anxiety Disorder


                          Current Treatments:
                          Pain Meds and Anxiety Meds
                          Gentle Physical Therapy
                          Yoga
                          Heating Pad~my best friend
                          Lots of hot baths w/ Epsom Salts & Baking Soda
                          Tens Unit
                          Prayer

                          Comment


                          • #14
                            No clue

                            He didn't say anything. He just said he wants to try the Enablex first and would put me on Elmiron later if that (and perhaps other OAB meds?) don't work. I feel like maybe they want to make sure it's not a regular OAB problem? I really don't know. I also have IBS symptoms, the whole package, so my odds at this point of having anything other than IC (post-kidney CT and GYN ultrasound) are tiny, in my view.
                            Spring/summer 2009 - diagnosed with H Pylori and vitamin D deficiency (both treated successfully), hormonal imbalance, and food allergies
                            July 2007 - PFD confirmed by physical therapist
                            June 2007 - start of IC symptoms.
                            May 2007 - start of significant IBS symptoms
                            Summer 2005 - migraines became chronic

                            Conditions: IC, IBS, PFD, migraines (currently under control), back problems

                            Current meds: bio-identical hormone creams, vitamin D, zinc, Captomer, magnesium oil, D-Mannose, FemDophilus, magnesium ascorbate

                            Other treatments: massage, mind-body healing

                            Comment


                            • #15
                              Joining the club

                              Well I think the uro took pity on me. He prescribed Elmiron after all and I just took my first pill. I hope it won't give me headaches or make my stomach worse (am in an IBS mini-flare). I'll definitely tell you guys how I am doing on the Elmiron. Also just bought glucosamine with MSM, will try it later.
                              Spring/summer 2009 - diagnosed with H Pylori and vitamin D deficiency (both treated successfully), hormonal imbalance, and food allergies
                              July 2007 - PFD confirmed by physical therapist
                              June 2007 - start of IC symptoms.
                              May 2007 - start of significant IBS symptoms
                              Summer 2005 - migraines became chronic

                              Conditions: IC, IBS, PFD, migraines (currently under control), back problems

                              Current meds: bio-identical hormone creams, vitamin D, zinc, Captomer, magnesium oil, D-Mannose, FemDophilus, magnesium ascorbate

                              Other treatments: massage, mind-body healing

                              Comment

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