How does protopic work on vitiligo?
I received a comment on a previous post in which I wrote about protopic being added to my excimer xtrac laser treatments. The writer asked how it works on vitiligo; upon reading the question I laughed at myself because I had no idea. Why on earth had I not researched protopic a bit more before using it?
So, here it is…more info than you may need about protopic 
What stuck out to me in this info:
1. no evidence of skin cancer has been associated with use of these agents in humans
2. it supresses the immune reponse associated with vitiligo
3. it’s not a steroid
4. works for some, but not all, cases of vitiligo
5. it’s not absorbed into the bloodstream or body
What is Protopic
Both protopic and elidel have been reported in the US to be associated with development of skin cancers in animals. This was with larger quantities of calcineurin inhibitor creams and there is no evidence that this finding has been associated with use of these agents in humans. Most dermatologists (even in the US) consider both elidel and protopic to be very safe in human use provided there is regular medical supervision.
Protopic (Tacrolimus) is a treatment that has mainly been used for atopic dermatitis (eczema). It is made from a rare soil bacterium found only on the island of Honshu in Japan which appears to have unique qualities in suppressing immune response. Over the last few years it has been used in clinical studies for the treatment of vitiligo.
Most experts believe that vitiligo is the result of the , mistakenly generating anti-bodies to the sufferer’s pigment cells, which attack and kill or weaken such cells. Protopic works to down-regulate (suppress) the immune response in a local area of skin, where the vitiligo is located; it has a similar effect to steroid treatment, but without the side-effects. The ointment is showing very good success in many (but not all) people who are using it.
Protopic can be prescribed by GPs for vitiligo, although it is not licensed for this condition. Often a dermatologist may recommend it but ask the GP to actually prescribe it.
The most common advice for patients by doctors is to apply the ointment twice a day with many doctors also recommending that their vitiligo patients expose themselves to natural sunlight a few times a week for 15 – 30 minutes. What is most reassuring to many users is that Protopic does not seem to be readily absorbed into the bloodstream or body, therefore keeping the treatment fairly localised. The product itself is available in two strengths .03% strength (usually for children) and also 1%.
One thing that should be remembered is that whilst Protopic is showing good results for many it can still take time for others to see any improvement. A period of three to six months is not unusual to see initial results and 100% repigimentation is still difficult, especially on certain parts of the body, such as the hands. Best results have been observed on the face. Even so once an area has re-pigmented it may be subject to a future relapse; some patients have reported long-lasting results whereas others have experienced a relapse.
There are some investigations into testing Narrow Band UVB Light Treatment in combination with Protopic and this combination has shown enhanced repigmentation in some studies. Further studies are required to determine the safe parameters for this combination.
resource: http://www.vitiligosociety.org.uk/treatments/protopic.html
The How does protopic work on vitiligo? by Nathalie Pelletier, unless otherwise expressly stated, is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Hi Nathalie,
Thanks for the sharing your research with us! Very informative! I’m just curious as to what your dermatologist said about Protopic when he/she prescribed it to you. Are you personally noticing any advantages when using the ointment? Any side effects? How’s the repigmentation process by the way?
hi sf,
actually, i asked him for the protopic and he agreed that it could help…i think it has. so far, there have been no side effects, but i do have to be careful to not apply it the night before a treatment because the skin will be to photosensitive.
the woman who normally does my treatment has been out for 6 weeks because she had a baby. when she returned last week, she couldnt believe how much pigmentation had occurred while she was away.
it’s so difficult to see results on yourself since you see your skin everyday, but her words made me take notice of the large amounts of new pigmentation.
we have just got back from seeing the dermatologist. my 13 yr old son has vitiligo as well as type 1 diabetes. (i know, what a bummer!!) we have been given protopic 0.1 and will let you know what happens!
Vitiligo has no permament cure, it can only be controlled by some medications.
Hi Tash,
Hope the Protopic treatment works! I read younger people have better response to topical creams. Keep us posted!
Hi I need help I’m 31 yrs of age and I have 2 white spots on my face the derm gave me some protopic cream, but I don’t see a change
it makes me feel so insecure at times, I have tried make up to cover – it doesn’t work my skin is a dark completion . I have a dr appts approaching I;m going to ask her about the Vit, cream lotion .
any suggestion ?
I have just started using Protopic for a small patch of vitiligo I’ve had for about 25 years. I was prescribed it by the dermatologist almost a year ago, but after I read all the warnings and possible health risks related to this medication, I held off using it until now. The dermatologist told me to ignore the FDA warnings, and that made me worried so I did some researching and decided after reading about the possible links to cancers, to use it only as a last resort. Well now it’s the last resort and I’m cautiously testing it out for a short time. I usually treat my body fairly good, I eat mostly organic food, and stay away from environmental toxins as much as I can, and using something like this goes against my better judgement, but I like most other people suffering from vitiligo, I’m getting desperate to rid myself of this condition and will try almost anything promising results. As far as results go, I’ve been using it as recommended on the box for over 3 weeks now with no apparent noticeable change yet. I really don’t want to have to use this medication for very long, especially since the warnings on the box say it’s not intended for long term exposure, and that the risks of cancer come from long term exposure. The cream itself is made of a toxic mineral oil base that itself would be harmful to use log term. Most of the research done on it with vitiligo though tell you to use the cream for at least 3 months. I think that’s crazy since it goes against the warnings of the drug company. I hope I see some positive results soon. I would be very disappointed, and angry at myself for exposing my body to something so toxic for nothing. Has anyone out there seen any results from Protopic after just a few weeks or have you had to wait months?
Dear Sir/Madam,
My wife is suffering from vitiligo. Her comments is given below.
“I am a 41 years old woman, suffering from vitiligo on my face, neck, hand and foot for many years. As well my mother and younger sister are suffering the same complication.
I have heard about Protopic and searched the Internet for the subject and found many comments. In my country dermatologists say that combined usage of protopic and UVB is useful for very small big spots where there are many spots in a certain location not for small and sparse spots.
Would you please tell me how should I use Protopic with some information about method and interval of use, or other instructions, how should i start it. Does it work with no UVB.
I would be appreciated for your kind reply.
hi all 6 years ago i had two white spots one in my face and the other in my leg they were about 1 to 2 cm each i used protopic with durmatic cream and the spots disappeared after few months the results satisfied me but now i have 3 more spots at the bottom of my back and on my leg I wanna use this medicine again but I think it doesn’t work without the durmatec
Hi everyone,
i just started using protopic 2 weeks ago…i have had viligo on my face–under my eyes, for the past 10 years. for the past 10 year, everyone dermatologist i have talked to said thre is nothing i can do, especially because the affected areas are right under my eyes. A few weeks ago a new dermatologist recommended protopic and ensured me it would be safe for my face and so near to my eyes. I have been using it twice a day. A few days ago, a good friend of mine said it looks a little darker under my eyes…today, i started to noticed it might actually be working. I am really excited and hope it continues to repigment, but i am also doing a lot of research on the long-term effects. i have a follow-up appointment next month, and my doc may also be starting me on the light treatments as well. But, he did mention that the skin on the face tends to be the most responsive to the treatments compared to all over parts of the body.
Good luck!
I just need help i have been on protopic for two days.thankyou
Hi everyone,
I have been living with vitiligo since i was in elementary school, and i am 28 years old now. protopic alone did not do much for me, however, i am now receiving the excemer laser treatment and was advised by my dermatologist to continue to use protopic so that we have more things working towards repigmentation, so i am trying to keep it up. the excemer laser seems to be working very well because it seems to be the only thing that i’ve tried so far that actually produced some repigmentation. this is very exciting!
for anyone looking for a makeup to cover the vitiligo spots, dermablend seems to be best out there to cover it up, for me at least.
hopefully this is helpful to someone out there!
I used Protopic 0.1% for two symetrical spots on my chin almost ten years ago. I exposed myself to natural sunlight about 30 minutes daily. The spots freckled at first, and then completely filled in. I thought I was done with Vitiligo.
Recently, after prolonged sun exposure the spots reappeared, along with a couple smaller white flecks. I’ve used Protopic for about two weeks now and hope to have success.
Hi Tom,
Good luck with the treatment. Protopic is supposed to work well for vit. Since there is no “cure” for vitiligo, all we can do is treat so once we stop treating the vit. can come back at any time. It is unfortunate but atleast you know that you can treat it. Hope things work out for you!
I have vitiligo on my neck, it is not just a spot but several, some lighter than others and some are small circles while others are larger. It is noticeable. I also have a few on my lower back less noticeable and a small spot on my calf. I am 17 yrs old and I’ve been having it since I was about 8 or 9. It appears that it has been the same ever since, no spreading.
My dermatologist prescribed Protopic 0.1% but it was my fault since I only used it for a month when I was told to use it for three and saw no noticeable changes. I went again and she prescribed 0.3%. I still haven’t started the treatment.
Meanwhile, I have been using MAC makeup to cover. However, it doesn’t completely cover it. My concern is if I continue to use MAC, that it will activate it and spread to my face.
Does using make-up activate vitiligo?
If I use Protopic again will it ‘activate’ it and spread?
Does getting rid of it for a while risk it coming back in a different place?
Can I use make-up over the ointment?
Also, what is the difference between both creams is one stronger and more effective than the other?
Please inform me of any side effects Protopic might have.
Hi, Evelyn,
I researched adverse effects of Protopic this time round. There was a warning issued regarding skin cancer, but it seems this been refuted–the incidence of skin cancer of those using Protopic is no more than the general population. Good luck!
Hi, RA,
I had discounted vitilgo ever reappearing, but, of course, there is no cure. I find exercising daily (especially cardio) and thinking positive thoughts makes this–and other–problems diminish.
I should also note that the first time the spots appeared I used a vitamin therapy outline in a book by Dr. Leopoldo Montes. Basically, it entailed high doses of folic acid and vitamin B12, which I injected b/c oral doseages aren’t absorbed well. I can’t say if this helped or not, but I’m confident Protopic did.
Thanks Tom! If any changes begin to occur, can you please inform me? I’ve never been so concern. I’m probably just being paranoid but it could be spreading. Do you think it is because I have now begun to use Protopic? How long did it take for the white spots to disappear the first time you used it? Also, you said you had sun exposure, doesn’t the ointment box messages says to avoid the sun? Was it just successful in your case or can I do it too?
Evelyn,
As I recall it took about a month for the spots to fill in. The ointment box does explicitly say to avoid the sun, but Protopic is not, I believe, officially approved for vitiligo, it’s indicated for
excezma. I live in the Netherlands now and I know the docs here recommend sun exposure with Protopic.
You can’t be sure if Protopic or anything else will work. At least for me, the best remedy is to get on with my life. I have very fair skin, so it’s not really that noticeable, but I know at your age appearance can be very important. It’s important that you do what you like and hang out with positive people. Don’t let appearance define you. You’d be surprised, but people don’t really care, or judge you, based on vitiligo.
If the treatment doesn’t work, check in with your derm once in awhile and on legitimate boards like this to see about new treatments. Don’t be fixated on trying everything.
Best,
Tom
Hi my 5 year old daughter just recently got diagnosed with vitiligo.. She only has a quarter size spot underneath her lip. Her dermatologist prescribed protopic for her 3 months ago!! I noticed small kinda freckles pigmintayion on her white spot… Now I’m new in this does this mean her color is coming back!!! I’m so ignorant to this subject and need help!! Thank u if someone coud orient me on the process of repimentation on the skin!!! Shecalso us a kid who loves the beach, pools, how much should she be exposed to the sun!!!
Hi Maria,
For most people the vitiligo “heals” by brown freckling in the depigmented spots. Some of my vit. just faded and blended in wih my skin tone but most of the patches freckle first then even out. So it is great news that you are seeing freckling! I have read the chlorine in pools may worsen the vit. so just limit the swimming. You may have to do more research. I don’t really swim much so never really looked into it.
Hi Maria,
About ten years ago, I experienced the same result from the Protopic as RA did. My spots on my chin below my mouth (one quite small, another quarter sized) first freckled, then completely filled in.
I read that with Protopic limited sun exposure is good. I’d do further research were I you, but I think at some extent a sunscreen is advised. Also, I’ve read some hopeful journal abstracts concerning Protpic and UVB or the excimer laser.
My spots have recently re-appeared, so I’ve been using the same strategy as before for about two weeks. I hope to have results soon.
Best of luck to you and your daughter!
Hi Nathalie,
I have recently acquired Vitiligo within the last 6 months but i saw one spot on hand then it began to move elsewhere. I noticed it in a small spot on my one hand then on inside of my forearm then under my chin (causing white hair growth) and then to top of other forearm as well as a few other places. I was bummed about it since I am Italian and never had it or at least never saw it. My skin is olive and I get tan easily, so it is noticeable even though the spots are small (nickle size) but increasing in numbers. I hope it doesn’t spread like crazy but I also hope to find the right method to combat or eliminate it.
I went to dermatologist and he confirmed it with a blue light, he gave me a script for pro-topic and I have been using it twice a day for 3 months but no changes at all with the spots. It just might not be the right method for me, I am due back in September. I was thinking about getting a script for a UVB Narrow Band hand held light as I’ve seen people say that it promoted new melanin regeneration in them but I will ask when I go back to doc.
I saw my grandmother when she was alive with it on her hands, so it might be hereditary but I also have diabetes, hypothyroidism as well and those factors might possible reasons for me getting it.
I did just find a few websites on Avita Medical in the UK talking about Recell and I was happy to read it, so hopefully that will make its way to being used consistently here in the US at some point.
I am glad that I found some sites such as this to help me stay on top of this disease.
Thanks
zdraveite na 21.08.2010,profesor izpisa protopic na moia sin .protopic + 15 min. uv laci.lechenieto za sega e 3 meseca.
Hi… My names katie… I’m only 10 years old and i got vitiligo as little as just about 5 or 4 months ago… i got it from mixing all these creams together cause i had mosquito bites on my lip and it looked like i had herpes. I was inpatient and stupid so i mixed pimple cream, itch cream, anti-fungal cream. I know, stupid. So i’ve been given protopic and i have segmental vitiligo on my face. Some dots have been appearing on the first week. I think thats a good sign. I hope this works in about 6 months because i have some very mean class-mates who say i am turning into micheal jackson and it hurts me that i feel like crying on the spot. Double crosses for this treatment working! Btw, the ointment was about $107.3 for 100 grams. A lot i know!!
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