NB-UVB Progress, Successful but slow and adding treatment.

Hey Guys just wanted to share a bit of my progress using NB-UVB lamp alone. I'm a bit nervous posting pictures of my vitiligo online but many of you have been so brave so why not. What you see here is about 1.5+ years of using just my NB-UVB lamp that I had purchased online. Honestly I couldnt give you an exact amount of time because I have been quite depressed and not really keeping track of time. I have to say that seeing any progress has been great but now this last bit is VERY stubborn and I have not seen much progress in some time which leads me to what I am adding to my treatment and I will discuss.

During the time I was using NB-UVB and before I have to admit I was eating quite a poor diet and would drink alcohol quite a bit one of the only things that really help me relax and feel better (I know its bad).

Now this all leads me to where I am now I am feeling a bit better in general and really want to get serious about getting rid of my vitiligo so recently I have improved my diet greatly. I have basically tried to cut out all meat, dairy, alcohol and sugar from my diet I will admit that I slip up on it but I am feeling much better overall. On top of that I am taking vitamins and supplements that I have outlined in another post but they are mainly Green Tea extract, D3, Folic acid b-12 Fish Oil and NAC. Also I am taking a probiotic in the morning and before bed.

This brings me to the last part of what I am trying to do to clear up this last bit of vitiligo. I have heard of the benefits of the dead sea in Jordan and the cream PC-KUS from the german doctor. For financial reasons I am not able to travel to Jordan so to try and mimic the benefits of dead sea bathing I have purchased a bag of dead sea salt online and have bathed in it a few times not quite sure how much I should be using or the frequency of bathing but I think I will try to do it quite often to try and give my skin what it needs to heal.

Now as for the PC-KUS I have purchased the powder ingredients from a shop on ebay and mixed it at home. Through testing with hydrogen peroxide the solution is showing to have catalase activity so I am confident it will have the same activity in the skin. I am applying the solution to my skin 2 times a day and "activating" it with a few minutes of NB UVB radiation from my handheld lamp. I am also trying to get some natural sunlight as well as I think this will help my body produce what it needs.

So now I have only been with the dead sea salt and PC-KUS treatment for about a week I really hope to update you guys in the coming weeks with some progress. I apologize if this wasn't easy to read I'm not great at writing. If you guys have any questions or just want to talk feel free to leave a reply or message me.

Good luck on your journey everyone I hope we can all try and keep a positive attitude I know its easier said than done but It definitely helps lessen your overall emotional stress. <3

As far as my PC-KUS application goes it is basically as follows.

In the morning or afternoon apply the PC-KUS to affected area and treat it right after with my NB UVB lamp for about 1:30 seconds on each area. The shape of my vit doesn't allow my wand light to cover the entire area so I do the lower part then the top.

Then at night do exactly the same thing with the PC KUS and NB UVB sometime before bed.

This is enough time to get it pink without burning but the time can vary depending on many different things I imagine. Such as wattage of the light or bulb type even things specific to each person.

I can do a small update even tho it hasn't been long at all I'm seeing something I haven't seen before.

Apologies for the photo quality I know its not great. Now the very top part has not filled in its just quite pink and covered with a bit of white hair as I'm avoiding shaving often to reduce unnecessary irritation in the area. But just below that what started as a small freckle is now a quite larger hyperpigmented area I have heard that this is normal and the color will lighten with time. This is the first time that I have had "hyper" pigmentation of this nature in this area so I can Imagine it easily being attributed to the PC-KUS usage or possibly recent diet changes. The lower middle freckle I think has also shown some progress but it is definitely hard to tell overall progress in such a short time

I really hope to have a better update in a few weeks.

Replies

Baxter Wellington April 8, 2015 at 2:29pm

I have a quick question, after doing some research on the top "vitiligo cure" oils and whatnot I have found that many have the same ingredients, coconut oil and a psoralen. Basically a psoralen is a compound that makes your skin more sensitive to sunlight. The psoralen in the popular "Anti vitiligo oil" is called "Psoralea corylifolia" or Babchi/Bakuchi oil which I have found and purchased for much cheaper online than "Anti vitiligo oil" along with liquid coconut oil. I plan to add this to my treatment as well.

I found an article on a study that showed positive results with Psoralen + NB-UVB treatment which can be found here.

http://www.ncbi.nlm.nih.gov/pubmed/24118425

"The extent of repigmentation in the P-NBUVB group was statistically significantly greater in face and neck"

So basically my question is does anyone have experience with psoralen + NB UVB? and is there any reason that I shouldn't be adding this to my treatment? For example could it interfere with PC-KUS in some way there isn't much info on the two together. If anyone reading has any thoughts or concerns feel free to share.
- Robot > Baxter Wellington April 8, 2015 at 2:41pm
  
  You can combine both. But you have to pass the herbal solution after the PC-KUS+UVB-NB exposure at night (before bed).
Syed Wali Haider April 7, 2015 at 3:51am

Thank you for your post. I would suggest that instead of making your own PC-KUS solution with the powder you purchased on e-Bay, you may consider buying Vitiligo P-142 from Amazon. It is manufactured by Viagard. It is supposed to mimic KC-KUS. If you are using some form of PC-KUS solution, it is important that you follow the exact protocol of using it with NB-UVB light therapy that the German doctor uses. I do not know what that protocol is.

I have Vitiligo which is quite widespread throughout my body. I purchased a full body NB-UVB unit and have been using it for a year now. The progress has been slow but I see a lot of freckles throughout my body. I am guessing it will take a long to get full re-pigmentation.
- Baxter Wellington > Syed Wali Haider April 7, 2015 at 4:41pm
  
  Well from everything I have learned the ingredients of the PC-KUS lotion are widely available the only problem with making a premixed solution is that it begins to breakdown and it also my be diluted too much. So I think my best bet of having a potent solution is using the powder and mixing it myself.
  
  I am using this powder from ebay and have contacted the seller and he has assured me it contains the exact ingredients that the most recent research papers have listed from PC-KUS.
  
  http://www.ebay.com/itm/10g-Pseudocatalase-PC-KUS-Recently-Reported...
  
  Now as for the NB-UVB treatment I found a video of a young woman who has underwent the dead sea treatment or is at least using the PC-KUS from the german doctor and learned how to apply cream and use the lamp from there.
  
  https://www.youtube.com/watch?v=HHf6JiVopXw
  
  A simple application of the cream and quite a short time of NB UVB radiation swiftly after.
  
  I appreciate all responses to this really helps knowing there are so many other people going through the exact same things as me and are here to help thanks guys.
  - Syed Wali Haider > Baxter Wellington April 8, 2015 at 3:24am
    
    Thank you for sharing your thoughts. It seems that you are going about it in a logical manner. We will all be interested in knowing how it will work out for you. Please keep us informed of your progress.
    
    How often do you need to apply PC-KUS and do you apply the NB-UVB light right after each application? If so, for how long each time?
    
    I saw the video of the woman you sent the link of. What surprised me is that she kept her eyes open for the duration she was applying the UVB light on her face. I am told that this is a definite "NO NO" as it can damage your eyes over a long period.
    
    I am going to stay with just the full-body NB-UVB unit for now until I have more data from people like you who are experimenting with PC-KUS.
    - Baxter Wellington > Syed Wali Haider April 8, 2015 at 1:48pm
      
      As far as my PC-KUS application goes it is basically as follows.
      
      In the morning or afternoon apply the PC-KUS to affected area and treat it right after with my NB UVB lamp for about 1:30 seconds on each area. The shape of my vit doesn't allow my wand light to cover the entire area so I do the lower part then the top.
      
      Then at night do exactly the same thing with the PC KUS and NB UVB sometime before bed.
      
      This is enough time to get it pink without burning but the time can vary depending on many different things I imagine. Such as wattage of the light or bulb type even things specific to each person.
      
      I can do a small update even tho it hasn't been long at all I'm seeing something I haven't seen before.
      
      Apologies for the photo quality I know its not great. Now the very top part has not filled in its just quite pink and covered with a bit of white hair as I'm avoiding shaving often to reduce unnecessary irritation in the area. But just below that what started as a small freckle is now a quite larger hyperpigmented area I have heard that this is normal and the color will lighten with time. This is the first time that I have had "hyper" pigmentation of this nature in this area so I can Imagine it easily being attributed to the PC-KUS usage or possibly recent diet changes. The lower middle freckle I think has also shown some progress but it is definitely hard to tell overall progress in such a short time
      
      I really hope to have a better update in a few weeks.
Joyce OB March 25, 2015 at 5:02pm

Make sure to use UV light first before you put on the solution, told by the dermatologist
- Joyce OB > Joyce OB April 15, 2015 at 8:10am
  
  Thank you for letting me know, I am using protopic only so far with the light treatment from the doc clinic.
- Joyce OB > Joyce OB March 27, 2015 at 4:08pm
  
  I visited two dermatologist, they both asked me to do the xtra laser first, then put the cream (either protopic or pseudo catalase), not put the cream first because it will block the laser treatment, the doctors might be wrong, I am doing what they told me, maybe both ways are all Ok.
  - Robot > Joyce OB March 28, 2015 at 1:50pm
    
    Protopic and Elidel block it indeed.
    
    Pseudocatalase has to be put before according to the German Doctor (creator).

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