HI everyone ,I have not been to this site since I was 21.I am 25 now and my vitiligo is almost all gone.I have had vitiligo since I was 13 and know how painful it is to be different.I have been using a medicine called Elidel (pimecrolimus) 1%.The medicine has given me great results.I have been using it for 8 months and my face is almost completely covered.I thought I would always have vitiligo and had given up hope.I have tried all the pills and diets on the internet with no results.This medicine works trust me but you need a prescription for it.My face will probably be completely covered by the end of the year.I don't even recognize myself sometimes.Don't give up hope guys this medicine works.Any questions you have just let me know I'm here to help.
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I was wondering if you can tell me how long it took for you to notice results with the elidel. My son has been on it for 3 weeks and I haven't noticed any changes yet. Thank you
Shelley
Dear Ish,
I'd like to sing praise to your post -- to the rooftops! Your feelings are exactly like mine on this topic. It is so important that I'll quote it below because I cannot reply directly to you. A reply button was not available so many levels under the initial thread.
YOU ARE 100% mirroring my concerns about the immune suppressants. It is heart wrenching that on top of Vitiligo you have experienced severe and debilitating side effects I was so worried about. You see, people who don't have this condition tell us to do this and that in its totality if things aren't working. Otherwise, if we do not, or are unable to follow some complex barrage in its totality, we are seen to have given up.
YOU HAVE EXPERIENCED the red and tiny brown repopulation as a result of these drugs, as I have, only to have them disappear. WE will be BLAMED on here for "giving up" or not trying things in their totality. That's a load of manure, frankly, dispensed by people who don't walk in our shoes or who haven't experienced this disease long enough to have had the treatments fail and the disease revert back to its white patches. I hope their recoveries are permanent. I also hope they are not further harmed by the potions and methods prescribed by well-intentioned docs and "people on the Internet."
Thank you, Ish. You have my sincere thanks for posting the following. I hope and pray you have a full return to health.
Friend,
Tom
Thank you for your kind message. I'm glad we have this space to discuss treatment options. I feel we sometimes get carried away by the promises made by often well-meaning professionals who are excited by the possibility that they may be able to give us some of our melanin back...It's either that or being faced with professionals who don't care and are totally dismissive....
If I can help someone by sharing my experiences, I'm happy to do so. I don't want anyone to feel they can't celebrate the success of the remedies they've invested in,heart and soul. I just want to urge caution because there is no known cure for Vitiligo. I sometimes wonder what my life would have been like, if I'd not allowed myself to be lead from one promise of a cure, to another-ricocheting from the highs and lows of repigmentation.
I have resolved to depigment and began in January this year. I just want to conclude this chapter of my life-where I am torn by not having enough pigment-that somehow denotes to not being whole.
I wish everyone the best-just urge caution. Living our lives solely aimed at recovery and being disheartened when the pigment you recover is lost to you, time and again-is incredibly tough. Everyone on here is unique and we all deal with our Vitiligo in our own unique ways. We all have one thing in common-we all want the same thing-a cure. Until that exists-we can support one and other.
Best wishes,
Ish x
Dear Ish,
Your wisdom is written on your heart, and your heart is shared with us in these last two messages. To me what you have written is profound and any Vitiligo sufferer would be deeply touched by it. It's trials are tattooed across all of us. I wish everyone could read what you have written here, as it describes a journey I have experienced, only to a degree but have experienced, and I have seen with others here.
Thank you.
Dennis I want to know-
How was your overall health during the 8 month period you applied the ointment which resulted in the improvement?
Did you have any of the side effects? Is its long term usage safe?
Were you prescribed any medicines along with the cream?
Like immunosuppressive drugs are to be taken for life by transplant patients whether application of Elidel can be stopped after a period of time (improvement)?
I don't want to scare you but just want to know if it's safe enough to apply for myself.
Hi Saurabh Misra, I understand your concern because any medication taken for an extended period of time is bound to have side effects. I have experienced no side effect from this medication aside from getting sunburned once or twice after long exposure to direct sunlight. I was only prescribed this medication by the doctor.She said to apply twice daily and avoid direct sunlight.During this process, I have had my physical done and results came back that I'm in good health. I have not gotten sick during this time and my immune system seems to be working properly. I can't say this medication will not give you side effect because everyone is different but I can honestly say that this medication has only improved my life. I feel so much better than I did before I took it because now I'm more social instead of hiding my face afraid to talk to people for fear of ridicule.I hope this helped any other questions just let me know.
Thanks for your reply to my query.
I too used Tacrolimus ointment which is available in India by the name of Tacmod Forte Ointment 0.1 % and known elsewhere as Protopic. It is similar to Elidel. My dermatologist also prescribed an oral pill which too was a mild immuno suppressant. But unfortunately in my case after 15 days of application and taking the pill I started to feel weak and lethargic. I am 36 and was otherwise healthy. I discontinued the treatment after researching about the pill and ointment I was using. I got a bit scared after I read that the treatment would work by weaking my immune system.
Everybody is using Protopic and Elidel ointments for Vitiligo. Hearing from you I feel that my side effects were due to the pill I was taking and not the ointment. I will now reconsider if I should apply just the ointment and not take the pill.
Wishing you all the best with the treatment. Keep us updated.
Saurabh, I had similar concerns after reading the warnings for Tacrolimus or Protopic.
I told the doc the labeling warns about lymphoma, etc. He said "Tom, they use this stuff on children. Just use it and stop worrying.
Well, it suppresses the immune system and therefore makes us vulnerable to cancer, etc. I'd rather have the Vitiligo.
Hi Dennis,
thank you so much for sharing your inspiring story with the rest of us. I am so glad for your progress!
Dennis, I have patterns like yours on my face, but not at my eyelids.
Your pictures give me hope.
By the way, consider a career in motion pictures. You're a dashing young man!
Keep up the good work, and thanks for sharing.
Pics are of my chest and under the arms. These areas, like others, are growing despite various things. Like you, and like all of us here, I've tried so many things and combinations.
I have not tried Elidel!
Thanks,
Tom
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