Posted by Saachi on May 13, 2014 at 1:42am in Main
I'm planning on trying the UVB treatment, and I was wondering if anybody can give me some insight on it. I know how it works for the most part, I was just wondering how effective it was for you, how you went about doing it, if you had any side effects, etc.
Also, if you could let me know what size/brand of the device you believe to be optimal. I've heard that the full body one is a good investment. I've also heard that you can get good devices off of ebay. I'm planning on doing it at home, but I'm not quite sure what is best to buy.
PUVA and UVA are said to be good, but not so much so as UVB. Has anybody tried either PUVA or UVA? Also, I'm not quiet sure what the difference between "BBUVB" and "NBUVB" is. I think "NB" stands for narrowband, but I have no clue what BB stands for. Does anyone know?
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I checked out the website. All the supplements indicated there are good stuff. I take some of the Vitamins and supplements indicated there. It maybe worth a try.
Callumae product has the same idea. It does not contain supplements as extensive as this one. Website for Callumae is
Bamsegutt > Syed Wali HaiderMay 22, 2014 at 11:41am
The professors cream the theory behaind the crem is right,in reality NO NO NO it doesnt work it doesnt reduce the oxdetive stress and helps to repig,she claim 95 % repigmentation she had about 2000 patients if it Works that most get good result by now every one could have known some one or we could have been advised by many ,very few ppl get repig by combining it with Deadsea,accthually it is the Deadsea which helps to repig not the cream, there are clinics who gives climathrapy for vitiligo and it helps for some ppl in some degree ,for some it is temporary.
I have been her patient and I know many who travel every year who still have vitiligo...for Dark skin Pl you can see rapid good result at dead sea.
Thank you for sharing your experience with using PC-KUS. Based on my reading I thought that this was a highly effective way to repigment. Sadly your experience has been negative. Have you found an approach that worked for you?
I am thinking of creating a post to see if other members of the forum have had any experience with using PC-KUS.
I have started the NB UVB light therapy at home for a little over two months. I will have to see what results I have in another month or two. From every thing I have seen in the literature, NB UVB is the way to go.
PUVA is used with oral intake of Psoralen. Some people do not tolerate this well. This uses a broader wavelength of light compared to UVB. I have not heard of BB UVB.
My Vitiligo is quite widespread so I ended up buying a full body unit from UV Biotek. There are other good companies who also sell such units like National Biological and Daavlin. Any one should be fine.
If you have just a couple of spots, you can buy a handheld unit for about $300.
Most of them are about the same. They use the lamp from the same manufacturer and they have a timer. There is one on Amazon for $249. Most of them are made in China and their user manuals are awful.
Have you seen a dermatologist and did you consider using Ellidel or Protopic cream first if your spots are not widespread?
I have vitiligo since I was 13 and now I am 42. I stopped all treatment some 10 years ago as none seemed to be working. I recently (last month) went to see my GP as I read that some people are getting good results and guess what - she said there is no cure so it would be a waste of time to start a treatment. Sometimes don't really know who to believe.
I understand the frustration. It is very confusing. I believe that there is cure available through Ayurvedic and Homeopathic medicines but for this you have to find a doctor who is knowledgeable and has cured this problem. There are no cookie cutter treatment with these approaches. I have tried both but did not have any success.
You may look into a supplement called Callumae and try it. Look it up on the Internet. I have not tried it myself. Sadly most of the "guaranteed" cures for Vitiligo advertised on the Internet are absolutely bogus.
The best I can tell, UVB is effective in repigmenting but is not a cure. It is more like a maintenance program. The same is true for Ellidel/Protopic creams. The most effective treatment for repigmentation as far as I know is the combination of PC-KUS cream along with UVB therapy developed by Dr. Karin Schallreuter in Germany. Again, it is not a cure. You may like to read about it on Internet. If you can't find it, I can send you the link.
The problem with the handheld UVB unit for you will be to make sure that it is being applied to the right spots. It covers a small area (2 inch by 5 inch). You will have to wear UV protection goggles. It will be hard for you to see where exactly you are applying on the face and on the back of the neck. You will have to repeat this several times to cover all the spots which will be tiring and time consuming.
Bamsegutt > Syed Wali HaiderMay 21, 2014 at 9:34am
@Syed You say "The most effective treatment for repigmentation as far as I know is the combination of PC-KUS cream along with UVB therapy developed by Dr. Karin Schallreuter in Germany."
I have been her patient about 2000 ppl have tried it it is not very succesful treatment.
Replies
Anybody have tried fiveday+
I came across this website but I don't know if it is a scam. I hope not.
http://www.vitiligoprotocol.co.uk/the-supplements-that-worked-for-m...
Nalini:
I checked out the website. All the supplements indicated there are good stuff. I take some of the Vitamins and supplements indicated there. It maybe worth a try.
Callumae product has the same idea. It does not contain supplements as extensive as this one. Website for Callumae is
http://www.progressivehealth.com/catalog/natural-vitiligo-treatment/
The professors cream the theory behaind the crem is right,in reality NO NO NO it doesnt work it doesnt reduce the oxdetive stress and helps to repig,she claim 95 % repigmentation she had about 2000 patients if it Works that most get good result by now every one could have known some one or we could have been advised by many ,very few ppl get repig by combining it with Deadsea,accthually it is the Deadsea which helps to repig not the cream, there are clinics who gives climathrapy for vitiligo and it helps for some ppl in some degree ,for some it is temporary.
I have been her patient and I know many who travel every year who still have vitiligo...for Dark skin Pl you can see rapid good result at dead sea.
Thank you for sharing your experience with using PC-KUS. Based on my reading I thought that this was a highly effective way to repigment. Sadly your experience has been negative. Have you found an approach that worked for you?
I am thinking of creating a post to see if other members of the forum have had any experience with using PC-KUS.
Hello Saachi:
I have started the NB UVB light therapy at home for a little over two months. I will have to see what results I have in another month or two. From every thing I have seen in the literature, NB UVB is the way to go.
PUVA is used with oral intake of Psoralen. Some people do not tolerate this well. This uses a broader wavelength of light compared to UVB. I have not heard of BB UVB.
My Vitiligo is quite widespread so I ended up buying a full body unit from UV Biotek. There are other good companies who also sell such units like National Biological and Daavlin. Any one should be fine.
If you have just a couple of spots, you can buy a handheld unit for about $300.
I hope this helps.
Hello Syed,
I have my spots mainly on the face and a big one on the neck.
I am thinking of starting the treatment - is there a specific hand held one you could recommend?
Thanks
Nalini:
Most of them are about the same. They use the lamp from the same manufacturer and they have a timer. There is one on Amazon for $249. Most of them are made in China and their user manuals are awful.
Have you seen a dermatologist and did you consider using Ellidel or Protopic cream first if your spots are not widespread?
Thanks for the quick reply.
I have vitiligo since I was 13 and now I am 42. I stopped all treatment some 10 years ago as none seemed to be working. I recently (last month) went to see my GP as I read that some people are getting good results and guess what - she said there is no cure so it would be a waste of time to start a treatment. Sometimes don't really know who to believe.
I understand the frustration. It is very confusing. I believe that there is cure available through Ayurvedic and Homeopathic medicines but for this you have to find a doctor who is knowledgeable and has cured this problem. There are no cookie cutter treatment with these approaches. I have tried both but did not have any success.
You may look into a supplement called Callumae and try it. Look it up on the Internet. I have not tried it myself. Sadly most of the "guaranteed" cures for Vitiligo advertised on the Internet are absolutely bogus.
The best I can tell, UVB is effective in repigmenting but is not a cure. It is more like a maintenance program. The same is true for Ellidel/Protopic creams. The most effective treatment for repigmentation as far as I know is the combination of PC-KUS cream along with UVB therapy developed by Dr. Karin Schallreuter in Germany. Again, it is not a cure. You may like to read about it on Internet. If you can't find it, I can send you the link.
The problem with the handheld UVB unit for you will be to make sure that it is being applied to the right spots. It covers a small area (2 inch by 5 inch). You will have to wear UV protection goggles. It will be hard for you to see where exactly you are applying on the face and on the back of the neck. You will have to repeat this several times to cover all the spots which will be tiring and time consuming.
@Syed You say "The most effective treatment for repigmentation as far as I know is the combination of PC-KUS cream along with UVB therapy developed by Dr. Karin Schallreuter in Germany."
I have been her patient about 2000 ppl have tried it it is not very succesful treatment.
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