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Does anyone here also have vitiligo?

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  • Does anyone here also have vitiligo?

    Hi,
    I have vitiligo and was wondering if anyone here has both vitiligo and IC. I was diagnosed with IC over a year ago (I've had vitiligo for over 20 years) and I noticed my vitiligo has gotten worse. Not sure if stress/diet changes for IC caused my vitiligo to worsen. I also take Prelief with certain foods and am wondering if the Prelief is causing my vitiligo to worsen.

    Thank you,
    Maria
    Last edited by mspinosi; 04-17-2011, 04:40 PM.

  • #2
    Yes, I also have Vitiligo. I have had it around 40 years. I have my own narrow band UVB machine (similar to what they have at a dermatology office) and have been have able to repigment significantly. The only depigmenting I have had since the onset of IC three years ago was in the beginning of my IC. I feel the three bouts of antibiotics before the IC diagnosis set off my vit. I have no medical proof that the antibiotics caused the spread, it is just my personal opinion.

    I do not feel Prelief has caused any spread of the vit.

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    • #3
      Irfran,

      What type of cost is involved in having your own UVB machine? I have a relative that has vitiligo and decided to quit doing that in the office because of the amount of time it took from her schedule. She is a mother and teacher so she is very busy. I thought I would let her know about this in home option.
      Thank you,
      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

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      • #4
        First of all your cousin will need a prescription for a NBUVB machine. I got mine from my PCP and not my dermatologist.

        Back in 2002, mine cost close to $2000. I purchased a wrap around unit from Daavlin (means I do my front and then turn around and do my back.) There are other companies that also sell the units.

        Some insurance companies will help pay for the unit. I never tried to get them to pay for mine. The company she purchases it from will deal with the insurance company for her.

        There is a wealth of information on vitiligosupport.org. There posts can be read and researched but you cannot post unless you are a member. I believe it costs around $25.00 per year.

        Comment


        • #5
          Thanks for the info, I will pass it along.
          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


          • #6
            Thank you for the reply. I am actually thinking of trying light therapy. I have vitiligo around my eyes and I was advised by my derm that it's not safe for eyes. I am trying to locate a doctor that provides light therapy for more information. Thanks again.

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            • #7
              My derm allowed me to not put goggles on my eyes. Of course, I keep my eyes shut. They repigmented rather quickly. Still have some on my eyelids but it is not very noticeable. Don't you just love raccoon eyes!!!!!

              The face is very easy to repigment. Hands and feet are very hard to repigment.

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              • #8
                Glad to hear that you repigmented quickly. I also wanted to mention that I had started eating more blueberries and pears since they are the safe fruits to eat with IC. I then found out these two fruits should be avoided if you have vitiligo. What are the chances??!! We should play the lottery!

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                • #9
                  Yes, I am aware that blueberries and pears may be a problem for vitiligo.

                  I do not like blueberries and rarely eat a pear. Strange that these fruits are okay for one disease I have and bad for the other.

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