Are there successful vitiligo treatments? Yes.
There are a wide range of treatment options these days. I was introduced to several by dermatologists. The first treatment that I was prescribed was Narrow Band UVB Phototherapy for my vitiligo. On the website of the dermatologist I used it says that this treatment is a good option for widespread vitiligo, only takes a few minuets per session and has been successful for thousands of people. On the downside there is “long-term skin cancer concerns.”
Hmmm. Let’s consider this for a minuet. Your pigment will most likely regrow, though by no means is this a cure and in most cases when the treatment ends your vitiligo will spread and the trade off is increased chances of getting cancer which might kill you.
Increased chance of deadly disease for which there is no cure so that you can have some of your pigment back temporarily. You look better but you are this most closer to being dead from a painful disease. That does not appeal to me anymore. Also, the idea that the treatment sessions for Narrow Band UVB Phototherapy for vitiligo are short is false. They are short in the beginning. As the treatment progresses as it must, the sessions get longer. I was at the point where I was getting treatments 3 times a week and sessions we lasting 50 minuets per session. 4 hours our of my week for a more normal skin pigment and am increased chance of getting skin cancer.
I asked the nurse practitioners about the cancer risk. “Oh its not really a big deal.” Really? Its not a big deal. It is to me!
I should mention that the pigment did regrow after a couple months of treatment. When I stopped after 9 months the pigment started going away again. Would I have to spend quite a bit of time in treatment sessions continually, for the rest of my life to keep my skin looking normal? Also, I did get a nice tan on the spots that did have pigment. A plus I suppose.
How do we define success when it comes to vitiligo treatments. Normal skin pigmentation? Is that it? If the answer is yes, normal skin pigment is all we are after regardless of the side effects, then there are successful vitiligo treatments.
I think we ought to ask ourselves what is the price of being normal or beautiful. Are we willing accept a potentially shorter life in order to have a standardized skin tone? I am not willing.
That same dermatologist prescribed a topical immunomodulator called elidel also know as Pimecrolimus Topical. (You can read more about elidel/Pimecrolimus Topical on this National Institute of Health website maintained by the US Government. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000236/)
If you clicked that link you may have read the first line which I will include here: “A small number of patients who used pimecrolimus cream or another similar medication developed skin cancer or lymphoma (cancer in a part of the immune system).” The FDA required the drug manufacturer to place a black label on elidel because of the side effects that warned people of the risk. My doctor did not warn me about these risks.
I asked the nurse practitioner about elidel. I asked her: “What does it do?” She said, and I will never forget her response: “We don’t know. But we have found it to be helpful with vitiligo patients.” Really? You don’t know? We don’t know? Who is we exactly? The FDA seems to know something about what it does. The drub company that made the drug most know something. “We dont know…”
Curious about what elidel does? From the NIH website: “Pimecrolimus is used to control the symptoms of eczema (atopic dermatitis; a skin disease that causes the skin to be dry and itchy and to sometimes develop red, scaly rashes). Pimecrolimus is only used to treat patients who cannot use other medications for eczema, or whose symptoms were not controlled by other medications. Pimecrolimus is in a class of medications called topical calcineurin inhibitors. It works by stopping the immune system from producing substances that may cause eczema.”
“Stopping the immune system from producing substances that may cause eczema.” Seems fairly clear. As you may or may not know, vitiligo is an auto-immune disease. The bodies immune system attacks the cells that creates pigment. So, immunomodulators like elidel are helpful when you want to stop your skin from being depigmented by the immune system.
The dermatologist’s staff just lied to me. I should have walked away right then. I worked with that dermatologist and his staff for another 9 months or so. I should mention that this dermatologist is quite well established in the South Bay Area/Peninsula.
More cancer risk? Two treatments were prescribed that increased my risk of cancer. No warnings. They just sold me. They sold the insurance companies too on the the idea that increasing my risk of cancer was good for my health. Over the course of those months in treatment I cost my insurance company tens of thousands of dollars. What if I get cancer 20-30 years from now? How much will that cost an insurance company? Is this a wise course of action?
There are more options of course. The strange thing is that almost all treatments have serious potential side effects. You get treatment for a disease that is not at all life threatening and your chance of getting a deadly disease increases.
What is normal skin pigmentation worth? And can we get rid of vitiligo without deadly treatments? These are questions I would encourage anyone to ponder.
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9 Comments
For my vitiligo treatment I use a medication called Tacrolimus which is similar to the Pimecrolimus you mentioned in your article and I begun bleeding in both my eyes. You can see the pictures on my blog.
I therefore, had to ask myself the same question you asked, “What is normal pigmentation worth?” and it definitely was not worth blindness.
I therefore stopped the conventional treatments and I was cured after attending a healing service though I have been applying some essential oils to the affected areas.
What do you mean by “healing service”?
Does that actually work??
what is healing service, pls give us some details please….
My 5 year old and husband have Vitiligo. My hubs started showing it about 8 years ago and our 5 y.o. last year. It’s progressed so much in one year and I feel so helpless. She is okay with it and I’ve become okay too. I just truly hope she continues to be so positive. I’m so happy that you shared your experience with these treatments – I’ve been looking into them, and get very skewed remarks.
Hey Ann,
Thanks for stopping by!
I am glad you found my experience helpful.
Have you considered exploring if your husband and child have any food allergies? Getting tested would be a place to start in my mind. I have found the changes to my health substantial.
I bet that your child’s positive attitude is because of the job you are doing as a parent. Bravo! Keep up the good work. The sense of confidence comes from the knowledge of your love. That is a gift!
Have you read the emilys vitiligo story?
Here is the link: http://vitiligo.50webs.com/
Saw your website: looks like you are having fun as an expat.
Best,
Keith
I have not looked into food allergies… Is their a connection? Ironically, the hubs has an allergy test in a few weeks, I will have to ask about the food thing. Maybe I’ll get our 5 y.o. an appt. too. This is all so new to us. Of course, I’ve read about it, and we’ve excepted it, but I honestly don’t know where to start.
Thank you for sharing Emily’s story… I have it book marked and hope to read it today.
I’m not sure what the doctors are doing in the States… But here, in Germany, I’ve been told by our pediatrician and dermatologist that there is nothing that can be done. You just have to accept it. Not the answer, or compassion, I was hoping to hear.
I’m looking forward to reading your story and becoming a more active member of the Vitiligo community. Again, thank you for putting yourself out there!!
Hey Ann,
For me the connection between food allergies and vitiligo is this: vitiligo is a disease and the problem is unknown so its best to understand as much as possible about each individuals body. If someone is allergic to gluten, like may, might there be a connection between inflammation caused by that gluten intolerance and the inflammation that is vitiligo? Autoimmune is not well understood by the medical establishment and it seems as though the alternative medicine practitioners have better options. I guess is depends on your willingness to explore health in a broader perspective. There is not much science that is helpful for people like us looking to deal with vitiligo.
My goal is to be as healthy as possible, be as well nourished as possible and stay clear of treatments that may have long term side effects.
I saw a dermatologist that teachers at the Stanford School Of Medicine that told me the same thing as the doctors you talked to. There is no cure, there are treatments, yet those treatments all come with side effects that may or may not be show stoppers for you. Each person needs to make an informed choice. As a disease that is cosmetically damaging only, it does not get much research dollars.
So glad to have you as a member of the global vitiligo community. It is always great to hear from someone that is struggling with the realities of this disorder and life. Feel free to email me with any questions or please comment here on the site. Many people come back to the site just for the comments! Thanks for being here.
Best,
Keith
My 4 yrs old daughter is having vitiligo.First i had consulted one doctor and he suggested streoids and execare cream.We had applied same cream and streoids for 4 months but there is no improvement.Then we consulted some other doctor and this doctor suggested phototherapy UVB and Pimecrolimus cream.My daughter had three times UVB in a week .I could see some improvement .Do phototherapy UVB has any side effects?.
I was having a white patch on my right eye side since past four months.I am using a homeopathy cream Ammi Visnaga since two months.The 80% patch area has been covered with bit black marks(hypermelanan) .
But another patch at my right chin (the place where the jaw bone ends) which was only a faded sketch two months back ,became visible developed..
Then I went for allopathy medicine treatment.There they took some blood tests and then confirmed the case as Virtiligo.They refered a cream Tacrolimus and a sunscreen Suncros and asked me to undergo phototherapy with two times a week.
The doctor is saying that the sitting will recover the patch in three months.
However by going through your comments I am quite in doubt wheather to start the phottherapy i.e.PUV B exposure to be continued for three months.
Please help me and suggest honestly wheather I should undergo Phototherapy or NOT.
Please help.