Forum

Protopic and oral psoralens

Posted by preeti deshpande on August 22, 2012 at 4:49pm in Main

Hi all! I just bought protopic for my face. Firstly I got extremely scared reading the information that comes with, since it talks about increased risk of cancer and other things.

Secondly, it talks about limiting sun exposure and any oral psoralen therapy. I wanted to check if any one of you out there has any idea about this?

Thanks in advance!

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Replies

  • Nancy Hickey August 27, 2012 at 12:57pm
    Hi, I'm new to this forum, but have had vitiligo for sixteen years. Most of my face has vitiligo. I just saw a new dermatologist in NYC this weekend and was prescribed pro topic as well. She also recommended the narrowband treatment. I am following with another dermatologist closer to my home with that, but need to discuss at the appt. Does anyone out there have really good results with that treatment? And what about hands, etc. Are you applying pro topic around your fingers, etc.
    • preeti deshpande > Nancy Hickey August 27, 2012 at 2:12pm

      I Nancy, i have tried a number of treatments, most of them have been misses rather than hits :( !!

      I am going to start with protopic soon and keep you posted. 

      • Nancy Hickey > preeti deshpande August 28, 2012 at 1:51pm
        Thanks Preeti, I'm just uncertain that I want to bring back my original skin tone To my face because at this point it is mostly done. I have been pretty lucky finding a makeup that works well. I have been actually applying a medication since march to the darker areas to try to lighten so it will blend in until it goes to vitiligo. I'm just starting to get upset about my hands starting to get spotty. :(. Any recommendations?
        • preeti deshpande > Nancy Hickey August 28, 2012 at 1:57pm

          Hi Nancy,thats the toughest to deal with, as it is the hardest to bring pigment on boney areas. 

          I am happy to hear that you are comfortable with your face being depigmented. For us Indians who are a dark brown, any shade of white, light or dark, is never going to blend in :(, so the contrast is really visible!

          I hope some miracle medicine comes out, if they can treat all other diseases, why not this?

          • Nancy Hickey > preeti deshpande August 28, 2012 at 2:14pm
            Hi Preeti, I agree with you. It's not like I am at all happy about my fCe. I am Italian and have a very tan complexion to begin with! I usually get very very dark. I have black hair. I have found a make up called Colortration that I buy on line. It is a stage makeup. I have to blend to colors to try to match, but it is never perfect. I spend lots of time on this. But oncei do my eyes and lips, I feel somewhat ok. I never leave my house without it. Now for the hands, etc. My mother got vitiligo in her forties. I started At age 33. She is now 83. Thyroid issues and some other isssues as well with my mom. So far, my thyroid is still ok.
            So, I can feel,for you being dark complexion. Do you have coverup? How far has itnspread and how long? I'm just trying to finally meet people who have dealt with this. Thank you for sharing. :).
            • preeti deshpande > Nancy Hickey August 28, 2012 at 2:32pm

              I just had small spots of vit on my hands, feet and elbows. But last year went through some huge personal problems and it spread like wildfire. In last few months I got in on my face, neck, chest, arms, thighs and legs....huge patches....stress leads to vitiligo which leads to more stress and more vitiligo :(( So yes I use makeup (even while going to the gym ;)) !! Once you look better, you feel better and my theory is that will help you heal faster. Most makeup runs on the clothes and is never a perfect match but still helps!! I have no other health issues...hopefully some cure will come in the future so that it is not so tough atleast for the future generations!

              • Nancy Hickey > preeti deshpande August 28, 2012 at 3:40pm
                Oh wow, thanks for sharing....I do also believe stress has lots to do with this. I noticed it more these last few years as well. Being a sole caretaker for my mom, her healthcare, surgeries, etc and working and taking care of my own home and other issues. I have been stressed! I agree,once you look better, you feel more confident. I really do pray that there is a cure for this sometime soon. I worry about my two daughters, age 21 and soon to be 25 . I do not want them going through this. My face, down my neck and chest is affected as well. It is so nice talking with you! Let's keep each other informed.....good luck to you!
  • Phil August 24, 2012 at 12:37pm
    Hi, ive used protopic on and off on my face for a few years now and it does seem to work quite well, i have not used it in combination with anything else though and when i stop the colour does tend to go again eventually. I think the trick is to use every day until you get good results and then maybe once a week as a maintenance programme as long term regular use is probably not advisable.
    Hope it works for you!
    • preeti deshpande > Phil August 26, 2012 at 2:26pm

      Thanks Phil! Its funny how there is not enough research on Vitiligo, and we the affected seem to know more about it than any dermatologist out there! Just because it is not fatal and does not cause physical pain, it has been completely ignored by the medical fraternity....so frustrating!

  • preeti deshpande August 23, 2012 at 2:38pm

    Thank you DJ. Were you taking any medicines orally along with the protopic? I have started taking LUKOSKIN which is a formulation recently launched in India. I have been on it for one month now. It contains psoralens. I was wondering if I should try protopic along with this or not.

    Anyone has any experience with this?

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