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: https://www.vitiligosociety.org.uk/treatments/protopic.html
Hi my daughter is African American and hers is on her eyelids to the dermatologist prescribed protopic.03% to her so please post your results from this medicine. Thank u in advance
I just purchased 30g of Protopic at Costco for $75. I was delighted since my doctor said it would be upwards of $100. Now I hope in the next 6 months that I’ll see results. I’ve had Vitiligo for over 20 years and would sure be nice to have my own color back!
Where did you get it for $200? I was almost charged $300 this morning, but helf off buying it.
Thanks,
Rich M
I have had vitiligo since I was child only on my leg & underarms but 2 months ago I noticed new spots on my chin, my derm prescribed protopic and told me to use it at least 2 times a day, I was doing it more like 4 though and after 1 month it completely repigmented! I am so happy and relieved I am now trying it on my older spots.
I just recently bought PRO TOPIC without insurance, 200 dollars.
I have had vitiligo for 5 years now. I have been trying to educate myself online on treatments available. I dont have insurance and I was wondering what it would cost to purchase these ointments such as protopic? If anyone knows or is buying these treatments, can you please let me know. Thank you
I am a brown-skin African American female with Vitilgo on my right eyelid and under my right eye. I have had Vitiligo for >10years. I have been using makeup coverup (Loreal and MAC) for the past 5 years with great result. Recently I was prescribed Protopic, just started using it today. Hopefully it works for my complexion. I guess I’ll let you guys know how it worked in about 6 months or so.
I had a small vitiligo spot on my right leg when I was 12 years old and the doctor in Indonesia prescribed psoralen and exposure to the sun. It worked well after several months. Only small pale spots remain.
Now I live in America and I am 52 years old. I had small vitiligo spot on my neck last year (3/2011) and used protopic and laser treatment. Not much success there. Only 10% of the skin repigmented. Last month (2/2012) three additional small spots appeared on my neck and chest.
I was so devastated. But thank God they are only small spots. I have been using protopic and undergoing laser treatment. I wish my doctor had prescribed me psoralen since it worked 40 years ago. But I thank God that it does not appear anywhere else.
salam ça va
Hello all,
I’m a 30 year old woman and I’ve had vitiligo for 10 years now. I tried treating it years ago but nothing worked. My dermatologist just prescribed me Pro-topic. I’m going to start using it this week. Hope it works, I have a lot of spots all over my body.
Julie
I know how you must be feeling. I am having vitiligo for past 10 years now. I tried a lot of medicines, but did not get good results. But recently I started applying Protopic 0.01% and it is showing some sign of improvement. Just a suggestion, I even sit in sun early morning. Sun is not hard early morning.
trust me.. i know how you feel i have it on my face too.. and im 19years old.. ive been using the cream from 7months now.. and it did get a little better.. i say try it.. its better then not doing anything ;)
Hi I found out I had vitiligo about 9months ago.. feels like its been 2days :(… I have been using 0.01% for about 7 months now, and it did not re-pigmented my skin but its not as pale as before. My doctors tells me I should keep using it for a full year… She says its better then it was but I find it still shows.. Should I keep using it twice a day?
I had quite a lot of pigmentation around the eyes mainly. First my GP told me there was nothing that could help me. For other reasons I changed my GP and the new GP was also a skin specialist. He advised me that the earlier treatment is applied, usually the better the results as the skin cells are still in a revivable state. He also said that if left too long they are more stubborn to get results. I was prescribed Protopic 0.1% for 6 months initially to be applied twice daily. For the first month or so there was none or very little improvement. I continued using the ointment and by 6 months my skin had almost fully repigmented. As there was still a little patch under one eye, (Around the size of less than 4mm patch) my GP advised me to continue the use of Protopic for another 3 months but only once a day for the first month and then just twice a week for the other 2 months, with monthly check ups. Looking at my face now you would not tell that I ever had Vitiligo. I have not used Protopic for around 6 months now and the results have lasted.
I would advise anyone to try Protopic. I know that GPs can be reluctant to prescribe it. My sister had exactly the same type of Vitiligo and I told her to try harder to convince her GP to allow her to use it and she has had the same great results as me. That too was after she had given up with other treatments offered by her GP.
This is my experience and I hope it is of some help.
Hi Dinky,
how often are you supposed to apply the ointments? if only once per day, i suggest putting them on at night so your skin has time to absorb the oiliness. Did your dermatologist explain how to apply the 3 products?
Happy New Year!
nathalie
I’m a 16 year old male and I was prescribed protopic and hydroval. I used protopic tonight and i don’t noe how im gonna put hydroval and put lotion on it after. and i go to school!
I have vitiligo for past few years. There is a great amount of re-pigmentation. But my patches are light brown in color not white. (this was the reason I ignored it initially). But now I am using protopic and sunlight, as recommended by my dermatologists and it works wonder. I saw some progress on my face.
Hi Nathalie,
Just a note, the stronger one is 0.1% not 1%.
Protopic worked great on my face. I had spots next to my eyes and the corner of my mouth. Protopic cleared 100% of it in about 1-2 months. I’ve combined it with sun exposure.
It also worked on the genital area, also had 100% success there. There were 2 spots, one about 1x3cm and the other is 1x1cm.
I still have all the pigment after 3 years.
It didn’t work that well on the other parts of my body. Now trying to treat the neck area, although I can see a little improvement, that’s not that fast as the areas mentioned above. That’s the oldest spot I have, about 10 years old.
Hello everyone. I’m a 20 year old male Caucasian, and I’ve had vitiligo for about eight years now. I’m very lucky, as my vitiligo is only triggered by very intense skin irritations, such as severe dermatitis or bad sunburns. I only have one patch of skin on my lower abdomen that is de-pigmented, which appeared after a severe allergic reaction I had to a belt buckle as a child. For years I never thought anything about it, because I never developed any other areas of de-pigmentation. I finally decided to see a dermatologist about it this spring and he confirmed that the vitiligo is focalized to that small area and wouldn’t re-appear anywhere else on my body, thank goodness. He prescribed me Colbetasol Proprionate ointment (a powerful steroid) and Protopic ointment in the 1% potency. I alternated between the two, two weeks one, two weeks the other, using each twice a day. I’m very pleased to say that my vitiligo has almost completely repigmented after 4 months, and continues to progress every day. I think by November the skin will be 100% re-pigmented. If anyone is suffering from hypopigmentation, I would very much recommend Protopic ointment.
i am 25 and i have vitiligo since i was about 10 years old its been very hard on me i have them all over my body and face i recomend u use deep dark self tanning lotion or go spay tanning it works great to me but u would have to apply every 2 days i love it it makes me feel pretty also mac foundation works great if u use the taning lotion under
I’m 19 years old i hav vertiligo on my face under the left eye i have only this patch in my body and my skin colour is black, cn u imagine how visible it is?.some times i feel bad thinking that i have this white patch on my face.i’ve tried some medicines i do not any changes in my skin now i do not have idea which medicine can i use that can work..please help…thanks in advance
Hi, I am a 31years old female Asian. I confirmed I have vitiligo 6 months ago. I have two white spots on my right cheek , one small on left , my jaw is all white and couple small tiny spots on my forehead,My dermatologist prescribed elidel . I have been using it for 4 weeks. I see little bit repigment and the color of white spots start to fade. I hope elidel work for me. Good luck for everyone and myself!
Hello, I am 29 and have vitiligo. I am using protopic 1% and have noticed a signifcant change in my pigmentation. I am also having a severe case of acne, I have never suffered from it whil growing up. I am wondering has nyone suffered wwith acne due to the ointment. My face has become very oily and I wear makeup so it looks and feels nasty .Does anyone know what I can use for the acne?
Thanks!
HI everyone, since vitiligo usually starts in childhood i am not gonna say when and how long has it been now and how many treatments have applied already,
But UV rays definitely works but it has some side effects , when i started going for UV rays after 2 weeks i got bumps on my legs and it was very itchy also my skin stared thinning where i had vitiligo.
but i did notice coloration on my knee it was covered too fast, i gave up because i had to go for treatment twice a week,
I went back to ointment ,my derma prescribed me protopic before the UV ray treament,after the treament he changed it to amcinonide 0.1%( Topical corticosteroid).
topical corticosteroid is very effective for me if i use it the way Derma has prescribed me twice daily , not on weekends,
i have started using on my legs , but unfortunately i started to see some spots on my face, On face i am using protopic because its more safe( Less side effects unlike Topical corticosteroid)
its just a matter of time and one has to be very consistent, unfortunately I m not very patient.. So when the spots become more visible i apply it on my face when it gets dull i stop applying.
its been more than 15 years LOL they play hide and seek with me….
I pray that not even my enemy get this disease ever in their LIFe.
hi Mikey,
i am so encouraged to read your post. i have had some repigmentation after using protopic and literally thank God every day because I know it’s by his graces that I am being healed in His time. I firmly believe that through faith and proclamation you too will see complete repigmentation!
I went to see a skin specialist for 3 white spots I recently discovered and he says its vitiligo. The Dermatologist prescribed me with Protopic and says it works best in areas where skin is not thick.
Lets not forget that only 1% of the worlds population have this condition so lets all thank the lord for this unique condition that we have and lets not give up in our search for a solution because for every question theres an answer and for every disease, illness, condition, etc… there is a cure.
I think the best solution is to cure the condition from within so lets eat and drink well and stay away from bad food and drink O and smoking.
I have a strict healthy diet and exercise 3 times a week with lots of running and with my faith in God I will be cured (God willing).
have any of you noticed itching while using protopic (or elidel)? Does that mean anything like repigmentation may be on its way..or does it just seem to itch because it’s a sticky kinda thick ointment on your face? haha…let me know if any of you have experienced that!
hey RA, omg, i feel so happy to hear about your results i am definetely going to see my dermatologist about this because i only have minor patches around my body and i am muslim so im pretty much covered up anyway so i dont mind very much, its just my face that annoys me lol i am really happy for you, i feel that those who have normal skin, absolutley beautiful skin who complain about spots and dry skin i kinda flare up inside thinking DAMN i WISH i had your skin so stop complaining lol so i cant imagine how you must be feeling :D thanks for sharing :) :)
Hi h,
I have not used Protopic so I am not sure about the side effects. I am also a South Asian female in your age group and have had vit. since i was 7 as well. I have been using UVB since the August of 2010 and have seen amazing results. My vitiligo is very extensive but it’s clearing up very very fast. The next time you see your derm., ask him/her about UVB and if it is suitable for you. It’s the most amazing feeling when you have had to hide under heavy makeup to cover vitiligo, and now that it has cleared up, people ask me what I use on my skin because it’s flawless and glows (according to them) I never thought I would be the girl to get compliments on my skin but I guess miracles are possible :). Good luck!
i wonder if anyone has tried black seed oil…..
i couldnt take the smell otherwise would have tried it
hi, im 20 years old, south asian female. ive been suffering from vitiligo since i was about 7/8 years old, i used protopic 2 years ago but stopped because my gp said i could get skin cancer? so ive been so scared to use it again. but, praise be to god, it worked when i used it and im finding it so hard to constantly wear heavy make up to cover it. i have it on my face and around my body, hands, thighs etc. its developing in the same areas again where i used protopic to repigment.
im using aloe vera gel directly from the plant, as ive heard it works on someone, but will take months too see any differences, i will let you know what happens. ive only been using it a few days now.
i have little brown spots on the actual patches but this is from using bio oil? i use it twice a day as a face moisturiser, could this be helping it spread?
anyway now i feel to go back to a dermatologist and get the protopic again im unsure what to do….
Jack have you try UVB?
I am a 51 year old male, and I have had vitiligo since my mid 20’s. I was always told nothing could be done. It was no big deal since it was mostly on my hands, arms and feet, but in my mid 40’s is was starting on my neck, chin and hairline. A friend recommended Protopic. I used it for several months (6-9 months — not sure exactly). I got almost perfect results on my neck, chin and hairline — it took a while, but all were completely repigmented. My arms and hands were a completely different story — little if any improvement.
I used the stronger ointment (1%?). I was supposed to use it twice a day, but I really only did it about once a day (in the morning after shaving).
I have stopped using Protopic and I have noticed depigmentation on my neck and chin again (after 18-24 months), so I guess I will start using it again.
Hi Amy,
In response to your last line, you don’t have to carry any guilt about whether or not you could have done more for your daughter. Vitiligo is either there, or it isn’t, and it doesn’t go away. i’ve recently posted the whole story of a little girl named emily who, through changes in diet and other means, repigmented. If you’re interested you can start reading it here httpss://vitiligocover.com/emilys-vitiligo-part-1/
Another idea: if the vitiligo is bothering her, perhaps using a light coat of bronzer or foundation, or cover lotion, on her face may help. This is not meant to encourage her to feel ashamed about her vitiligo, but as a tool to cope and keep building her self-esteem.
I have a 5 year old daughter, and she was diagnosed with vitiligo about two months ago. I noticed two small white spots on her face when she was around 3 years old. I immediately took her to see her pediatrician. He said it was scar tissue, and to just keep it moisturized with a good lotion. I saw no changes, and decided to take her back. This time he said she had eczema, and prescribed triamcinolone ointment and hydrocortisone cream.
Over time the spots spread all over her face,legs and her feet. I did research, and I figured it was vitiligo. I took her back and asked that she be referred to a dermatologist. The dermatologist confirmed that she did have vitiligo. She prescribed protopic ointment o.1% and locoid lipocream 0.1%. I’m really hoping this will work. I know that people can be cruel sometimes. I don’t want her to suffer with this for her entire life. I wonder what would have happen if I’d taken her for a second opinion a long time ago.
I have had vitiligo for 25 years on hands, knees, elbows, chest area, etc. I started using .1% protopic once a day about 6 months ago on my chest and hand area. After 3 months I was getting frustrated because I saw no improvement. My dermatologist told me to give it time and I’m glad I did because the chest area in beginning to repigment after 6 months. No improvement on my hand, so I will give that a little more time. So, my point is, it make take a little longer for some people to have repigmentation. Be patient!
I’m Hispanic and 27 years old. This is Feb 2011. In Nov 2010 I had multiple small spots under both armpits. No one in my family has vitiligo or auto immune diseases. I have taken multiple blood tests and I also have no auto immune diseases. So I am a case of no hereditary or illness component. I was prescribed Protopic 1% and have noticed almost complete repigmentation under both arms with the exception of one spot which has actually gotten whiter. I am darker skinned so the contrast is noticeable. I have been using it for 2 1/2 months twice daily without fail and am so happy about the results. Since it is in my armpits they get no sun exposure (plus it’s winter) so I’m going to try to make it a point to even just hold my arms up when I’m in the car lol and maybe it’ll repigment that one larger white spot I still have.
Hi Kat,
I am really sorry to hear your experiences. Any trauma to the skin can cause vitiligo, including, sunburns, regular (fire) burns, cuts, or even tight clothing. Self blame is never helpful. It will make you feel worse. For some people chlorine seems to be a problem so you might want to be cautious when going swimming. I have never really looked into that because I am a terrible swimmer and with extensive vit. have never wanted to wear bathing suits. I have been treating using UVB and it has been very helpful. Try not to stress about them because the more you do, the worse the vit. might get. See a derm. and see what treatment he/she suggests for you. Also, I find that communicating with others who have vit. like on this website, has helped me ALOT. Good luck with everything!
Hey everyone
I’m 19 years old and have had this problem ever since I went through my sunbedding faze when I was 18 and 100% know this to be the cause. I regret nothing more. I was blessed with a lovely ‘translucent rather pale porcelain skin’ and why I wanted to be brown I don’t know.. I’m very upset about this as I have now ruined my skin and am covered with these white-no pigmentation spots. I first noticed one very obvious one on my back recently another one i’ve noticed there. I have little ones all over my arms and legs the other day after going in a pool I suddenly noticed a huge one on the right side of my face..checked the other side there was nothing there then lastnight I noticed another huge one on the otherside. My skin has been unbelievably sundammaged due to the sunbedding and I can’t believe over a year after (I avoid the sun now) that things are still popping up left right and centre. The other day for once I went on a day trip to the hot pools I wore sunscreen yet I got servely burnt I wasn’t exposed for long which is strange as before the sunbedding I hardly ever burnt but now it seems I can’t get the slightest amount of sun even with sunscreen I just burn get pigementation freckles moles sun spots broken capilleries the white spots lines countless things its all stressing me so much I don’t no what to do. I advise no one to ever use sunbeds!!!!
Hi! I have vitiligo for about 6 months, but recently went to go see the doctor a month ago, who prescribed me to used protopic. I have it right above my eye, and it stretches up to my forehead. Luckily, I have bangs which are able to cover it.
It hasn’t shown much signs of pigmentation yet though. I have heard that using chinese herbal medicine works well, so I will try that out after I go see my doctor again and ask if I can use chinese medicine while using protopic.
Hi,
My daughter has vit. So I’m trying to get as much info as possible. When you say protopic with 30mins sunlight, what does that mean? Do I just let her get some sun exposure or should it be just on the spot? How is that possible? Thanks guys. YOu guys are great!!
John
ZZ no i am not TC i live in the USA and i am not chinese
HELLO EVERYONE I JUST RECENTLY DESCOVER I HAD THIS AND I HAVE HAD IT FOR ABOUT 6 MONTHS. IT STARTED OFF ON THE SIDE OF MY EYES AND IS SLOWLY GROWING. MY DOCTOER GAVE ME PROTOPIC 0.3% BUT IT DIDNT WORK SO MY DERMATOLOGIST GAVE ME PROTOPIC 0.1 BUT I DIDNT SEE MUCH OF A DIFFERNECE SO NOW I WENT TO A DIFFERENT DERMATOLOGIST AND HE GAVE ME ELIDALE AND HYRDOVAL WHICH HAS TO BE APPLIED TWICE A DAY IF ANYONE HAS TAKEN THIS MEDICATON PLEASE LET ME KNOW ! I HAVE BEEN USING IT FOR ABOUT 4 DAYS. ALSO IF U EAT FISH AND DRINK MILK IT IS A CAUSESES IT. EAST INDIANS BELIVE THAT DAIRY PRODUCTS AND SEAFOOD DONT MIX WELL TOGEGTHER THEREFORE LEAVING WHITE PATCHES AROUND THE FACE AREA, ALSO LEMONS, BEEF , SEAFOOD CAN CAUSE THIS TO SPEAD
zz why you changed your user id to ww i like zz better
hey my doctoer gave me hydro val and elidel to apply twice a day . does any one have this same product and if so has it helped?
ww: sure whats your msn?
Lee Ha: I don’t avoid any foods per se as whilst doing research i found that different websites offer different opinions, ranging from citric acid to bread to chocolate – basically everything.
I have cut down on shellfish comsumption though as I am wary that my siblings used to get allergic skin reactions to shellfish. Not really sure if thats played a role in its improvement at all.
ww: – Yes in UK and chinese. I’m based in Manchester. What about you. I agree its very difficult to talk about this, especially in Chinese culture. But a quick search on the web and we realise that its actually quite common. Still no real consolation though i guess.
TC do you avoid any certain foods?
For anyone who is interested :
I am 25, chinese and developed 2 spots of white patches on my face at the start of the year. 1 was a size of a UK 5pence piece, while the other was a 7×1.5cm stretch along my jaw line. It became more ovbious after i spent a week in the sun in March.
I became very self concious about it and in June I started using protopic, twice a day for 2 hours. I’ve not suffered any reactions from it.
Initially i saw no real improvements for about 3 months even though i was putting it on religiously. But from September onwards, i noticed that the jaw line stretch was starting to become a pinkish colour, whilst the 5 pence piece mark was starting to colourise also.
Although pink is not my natural skin tone – it is much better than white! Slowly it is helping with the vitiligo and i am very pleased about the results.
After researching vitilgo, i realise that realistically i can’t expect a complete reversal but at least i am now much less conscious about it all!
Hope this helps for anyone who is deliberating about using protopic
For anyone who is interested:
I am 25, chinese and developed 2 spots of white patches on my face at the start of the year. 1 was a size of a UK 5pence piece, while the other was a 7×1.5cm stretch along my jaw line. It became more ovbious after i spent a week in the sun in March.
I became very self concious about it and in June I started using protopic, twice a day for 2 hours. I’ve not suffered any reactions from it.
Initially i saw no real improvements for about 3 months even though i was putting it on religiously. But from September onwards, i noticed that the jaw line stretch was starting to become a pinkish colour, whilst the 5 pence piece mark was starting to colourise also.
Although pink is not my natural skin tone – it is much better than white! Slowly it is helping with the vitiligo and i am very pleased about the results.
After researching vitilgo, i realise that realistically i can’t expect a complete reversal but at least i am now much less conscious about it all!
Hope this helps for anyone who is deliberating about using protopic
BTW: Since I have it on my neck and face, I use Colortration on the spots as a base and use “regular” make up such as Clinique or Revlon to go over the Colortration and regular color on my face to even out the skin tone. Colortration comes in a pump so it’s very easy to use. I also use the Colortration barrier spray so the make up on my neck does not rub off on my clothes. You can find Colortration online.
Hi, I’ve been using Protopic and Excimer Laser treatments twice a week since August 2010. I had a large spot on both sides of my face near my ear and jawline. I also had it on my forehead near my hairline. I have about 90% repigmentation.
Hi…I developed vertiligo earlier this year. It was on my face near the right corner of my mouth, about 2 squares inches, an irregular patch. It developed within about three weeks and was very noticeable. The dermatologist prescribed betamethasone ointment for 4 weeks and then Protopic after that. The first 4 weeks on beta, I didn’t notice much change, but when I went on the Protopic, after about two weeks the color started coming back. It took another three weeks and now you can’t tell I had vertiligo at all. Absolutely amazing!
Hi
Hi, I have had 5 mm depigmented area in my testes for over ten years and today the dermatologist told me it is vitiligo,since my father has vitiligo and the Dr prescribed Protopic 0.1% for me and I will start my tretment tommorow and God willing, it will work and I will let you know guys the result.
Thank
used it for several months and had zero success.
Hi, I have had vitiligo for over ten years now, I am only 22, and have really not tried any treatment for any prolonged period of time because I was always told nothing could be done. I am going to see a dermatologist and hopefully begin uvb treatments or laser treatments. Does anyone know which would be better in their opinion? Also, I would like to tell the doctor about protopic and the success it has had with treating vitiligo, but I am unsure how to go about this. Based on my experiences with dermatologists, they can sometimes be very stubborn, and will not take suggestions from patients. Any ides would be helpful.
Hi!
2 of my daughters were diagnosed with Vitiligo. My youngest daughter, who is 2 years old, has lost pigment in patches above her eye, on her chest and back. My eldest daughter, 6 years old, has one patch on her stomach.
The Peditric Dermatologist who confirmed the diagnosis has prescribed Protopic 0.1% for both my daughters. He explained to me that he is prescribing the adult strength, but the advisory that this strength should not be used on children has me worried. His rationale is that we may as well give it our “best shot” with the higher concentration, but I’m concerned. The girls are both quite young, and I obviously don’t want to do anything to hurt them.
Any thoughts or advise would be greatly appreciated!
Thank you.
Thanks Tom, It is 2 days since my earlier post and I would like to add that I have carried on with the Protopic treatment and the burning sensation I got after the first application has completely gone. It does tingle a little for the first couple of minutes after application but that is all. I am going to carry on with the treatment up until possibly 3 months or as long as my GP advises.
Another experience I would like to share is my efforts today to try and take pictures of the condition. After numerous attempts with a digital camera without any reasonable success I resorted to drawing a picture of my eye outline and drawing and colouring in around it the pigmented areas to the size and shape of the Vitiligo. I have dated the picture and will in a week or so draw another picture beneath the first one for comparison. People have stated in earlier posts that as we look at it every day we find it difficult to see variations. Hope this might help others too.
As my earlier posts indicate, I’ve used Protopic for two symetrical spots on each side of my chin (just below the edge of the lips). These spots relapsed after an absence of almost ten years. I then had 100% success with Protopic and vitamins. I tend to believe the Protopic made the difference, but I have, of course, no scientific evidence to butress this claim.
I am happy to report that after six weeks of twice daily application and at least 30 minutes sun exposure daily the spots have filled in and are now barely noticeable.
I’m also taking vitamin B12 and Folic Acid in accordance with the nutritional guidance from Dr. Leopoldo Monte’s Book, Vitiligo: A Nutritional Approach. If nothing else, these supplements keep me healthy and can’t be bad.
I’ve read a lot of medical literature on the disease and believe I had a genetic predisposition (a cousin has it) and the trigger (PTSD and depression). I really believe there’s an emotional component, i.e, stress, involved. I’ve learned to calm down a lot, meditate, and restrain the competitiveness of my Type A personality.
Hi, I have been developing Vitiligo mainly under my eyes for the last three years. I am a 37 year old male. My GP at the time told me it was not treatable and that I should just keep an eye on it. I have since changed GP and my new doctor also happens to be a dermatologist. He also warned me that treatments are available but effective results are rare and difficult to achieve.
He prescribed me Betnovate 0.1% cream to apply twice a day for only one month. He told me not to book a follow up appointment as the results (if any) will be seen later on after the treatment ends. I left the surgery with little hope and started the treatment. I didnt notice any change within the four weeks I used Betnovate.. but for the following two weeks I noticed freckled and filling in of the white areas. Upto 30% improvement!! I went back to the GP hoping I would be allowed to carry on using Betnovate as I had no side effects and was seeing good improvement. He said as Betnovate was a steroid cream he wouldn’t advise me to carry on using it but to try Protopic, (twice Daily) for upto 3 months. I applied it for the first time last night and it has been burning the skin around my eyes ever since. I am sitting here now wondering whether to apply it again and see if the burning subsides with time or to give up on its use. If anyone has any advice please put up a post.
I will make another post with developments.
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!!
zdraveite na 21.08.2010,profesor izpisa protopic na moia sin .protopic + 15 min. uv laci.lechenieto za sega e 3 meseca.
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
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 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 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!!!
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
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?
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.
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 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 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 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 just need help i have been on protopic for two days.thankyou
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!
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
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.
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?
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 ?
Hi Tash,
Hope the Protopic treatment works! I read younger people have better response to topical creams. Keep us posted!
Vitiligo has no permament cure, it can only be controlled by some medications.
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!
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. ;)
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?