I started PC-KUS combined with narrowband UVB in October 2014. I went to Jordan in 2015 to take part in the Dead Sea treatment (an amazing and fun experience) as well.
But, I've seen only very minor re-pigmentation as a result. I've got a couple of tiny spots of pigment on my neck, and a couple of other vit areas are a tiny bit smaller, but that's it.
Also, my vit is starting to spread again, mostly on my face, despite doing the treatment every single day!
I met lots of people in Jordan who got great results with this treatment, so I know first-hand that it can work for a lot of different people, but I'm just mystified about why it's not working for me.
I'm wondering whether anyone else on here has had the same experience, and whether they found a way to improve their response to the treatment?
Thanks and keep smiling...
Replies
Hi, How are you? Are you still continuing with the pc-kus treatment.
Hope you have not gone to Fiji as yet. Wondering if you can update us about your progress with the treatment.
Thanks.
Saurabh
Hi Tom
I'm sure you have this covered but I remember Dr Karin saying that she noticed some patients didn't get the desired results because they were too far away from the UV machine. She recommends being 20cm away from the Unit.
I'm thinking that if you've been using it daily for a large period of time it may be worth having a few weeks total break as your immune system may become resistent to the benefits of the cream. I took my son to Germany in late Jan and he seems to be responding well to the treatment although he was receiving UVB just before we went, I've decided to give him a 2 weeks break so that his immune system doesn't build a resistance to the cream.
Thanks Imran. Yeh, that's not a bad idea. I might try switching to Protopic for a couple of weeks and then go back to PC-KUS after that. Or I might go and live in Fiji where there is no stress :)
Hi Tom, I have used Pseudocatalase cream off and on for years and have repigmented. Dr. Karin Schallreuther developed it while she was at Northwestern University in Evanston, IL (a suburb north of Chicago) in the 1990's. All versions of pseudocatalase cream have the same active ingredients.
I too went to the Dead Sea, Jordan side, in 2014. I had good results. I used pseudocatalase cream while I was there and Recouleur vitamins. My repigmentation continued after I returned home. People said it would and it's true. My new pigment faded a little when I stopped treating. Any vitiligo treatment needs to be used consistently 3-6 months. New pigment requires maintenance treatments to be retained.
How long have you been using PC-KUS and NB UVB?
Regards,
Hi Audrey, glad it worked for you. It seems to work well for most people.
I've been doing it for a year and a half though, with no significant benefits. At the moment there's no real alternative so I'll keep trying, but I must be missing something about my vitiligo that's reducing it's effectiveness.
Hi Tom,
Thank you. It's nice to meet someone who has done something similar to treat their vit with pseudocatalase and who has gone to the Dead Sea. Are you taking any vitamins? Maybe its time to rotate topicals. You mention there are no real alternatives. It sounds like protopic / elidel is not available in the UK. Steroid creams can be effective too although there are the negative side effects.
Hi,
Sorry, I should have mentioned that I have tried Protopic before, also with no affect I'm afraid. I am willing to try it again, but of course I can't do that and PC-KUS simultaneously. Germany is close to the UK and I think Karin would fly over and slap me if I did that! :)
I do sometimes take a vitamin B supplement, but I've not tried that treatment protocol properly yet no. I am happy to try it and I know you sell a formula that worked well for you. It's certainly another avenue to look at.