My last post was Oct 20, 2014 – This is far from acceptable and everyone is due an update on my progress! I’ve had many personal e-mails asking where I’ve been and someone even asked if I’d passed away….!
I’m still here – It’s just been a hectic time after getting back from Jordan last year, I moved to London and went through about 2/3 jobs before I was settled in the right place. I’m now in a great job but it does consume what feels like 95% of my time and the blog has just taken a back seat.
I’ll make sure to dedicate some time within the next month to get a full post up explaining all details on my treatment. There have been some relapses (all down to me, not the treatments) but on the whole my progress continues to be very good.
I didn’t go to Jordan this year, but I plan to go next year in 2016.
I’m trying to make my way through all the comments and reply to the personal emails, it’s been fantastic that so many have you have been in contact.
I’d also like to thank those that respond to some of the questions in the comments, it’s great that the site has a small community.
I have many things to follow up on including posts, eating/treatment plans, interviews etc. I’m going to attempt to pick these things back up over the coming months.
Back soon!
12 Comments
Hi,
I have visited this year and see lots of your friends and heard lots story.
This treatment is really worth for me. I have got 60 %re pegmentation on my face.
Nice to see you, you are inspired to lots people who visited overall
Hi Simon
Good to hear your progress getting on well. Hopefully not long until you’ve complete repigmentation.
Regards
Imran
Simon,
Hi, great to hear from you. Hope everything is all well.
I found a link: http://www.telegraph.co.uk/news/science/science-news/11696304/Has-Yale-University-finally-found-a-cure-for-vitiligo.html
Can we have a dialogue in respect to this new finding.
The medicine is “tofacitinib”
Thank you
Pedro G
It’s all about MIA. See the links below.
This article confirms that if we stop MIA we have a chance.
Dr. Matteo Bordignon thought that MIA was coming only from one relevant source (i.e. melanocytes). But as a matter of fact, it comes from both dysfunctional sources: melanocytes and chondrocytes.
Vitiligo in hands have more to do with joints (chondrocytes) than melanocytes.
http://www.vitiligomap.com/pdfs/Rheumatology-Muller-Ladner.pdf (MIA in RA)
http://archderm.jamanetwork.com/article.aspx?articleid=2323633 (Article)
Great news! Finally something sounds like the real deal.. Makes a lot of sense too since vitiligo usually spreads on those parts of the body that the drug was mentioned to treat. But again, may take years till FDA will aprove it and also the side effects are scary. Still im exited :)) Tired of waiting for Bordignon’s and Le poole’s secret treatments..
Thank you a lot for sharing this!
It’s already approved by FDA.
Yes, but not as vitiligo treatment.
They still testing Tofacinitib safety to treat alopecia and psoriasis (which is also immune system dissorders) . The research begun a couple of years ago and the results will be published by 2019.
More patience..
Nice day!
Tofacinitib and Afamelanotide are already available in different countries. Now it’s a matter of patient-doctor decision.
I believe Bordignon will come up with a treatment much earlier that 2019.
It will not be a coincidence if his treatment combines with Tofacinitib…
Hi Friends,
I have reasons to believe that vitiligo patches are caused by a protein called MIA that detaches melanocytes. As a matter of fact, that’s Dr. Matteo’s theory that I agree 100%.
Recently I realized that this MIA protein has 2 cellular sources, which are (1) melanocyte/keratinocytes from skin, and (2) chondrocytes from cartilage of joints. Both sources produce MIA when submitted to friction and traumas (daily actvities).
So, putting all together I came up with a suggested explanation to 3 different vitiligo treatment reponses. See below:
1- Vitiligo on face:
Usually Protopic helps to re-pigment. Why? Because there are no joints on face. There are a lot of physical traumas and friction from (1) daily pressure against the pillow (bone protuberance), (2) shaving, and (3) make-ups. So MIA production is low / moderate, since it comes from one source only. Melanocyte production can beat MIA production (which is not high) with the help of this immunosuppressant (Protopic). Protopic helps the microinflammation that detaches melanocytes causing patches.
2- Vitiligo on knees / elbows:
Usually Pseudocatalase cream works fine. Why? It remove the H2O2 in the hair follicles. Melanocyte production (from stem cells) are abundant. MIA production is abundant too, since it comes from both joints and melanocytes. Protopic can not handle by itself. Pseudocatalase cream clears all the follicles, letting it release young melanocytes. So, melanocyte production can beat MIA production.
3- Vitiligo on hands / feet:
Usually nothing helps much. Why? MIA production is hyper abundant in hands and feet, since there are a lot of joints. MIA production beats melanocyte production easily, since there are few hair follicles there. The only way to reduce MIA production in hands and feet is stopping it from being produced in the joints. It seems that this new drug tofacitinib can do it since it’s a kinase inhibitor.
Sorry for this long post. I hope someone be interested in discussing it.
Tofacinitib and Afamelanotide are already available in different countries. Now it’s a matter of patient-doctor decision.
I believe Bordignon will come up with a treatment much earlier that 2019.
It will not be a coincidence if his treatment combines with Tofacinitib…
Hope you right!
I believe that the americans ( Le Poole or King) will come up with something much sooner than Bordignon.
His theory makes scence, but he does’nt publish anything about his progress – it just wierd..
Don’t put your eggs in one basket!
I agree.
If you go to my website, you will see tha I combine many different baskets in the same protocol.
I really don’t care about which research will come up first with the right treatment (Le Poole, Bordignon, Afamelanotide, Recell, Dr.Schallreuter, Tofacinitib, etc.), as long as they do.
About Bordignon’s research, it seems to me that he provides the only reasonable explanation about the cause (not cure yet) of vitiligo.
So, in the meantime, in my free time, I try to put all that makes sense together, including Bordignon’s research, but not restricted to it. A good example of it, is the fact that Bordignon doesn’t consider MIA generated by chondrocytes in the joints. I’ve been mentioning that in my website for over a year (supported by a paper from 1999), and now, we’ve heard about a possible connection between RA and vitiligo ( Tofacinitib).
Last, but not least, what I don’t buy anymore is the immune system theory, but melanocyte dettachment. Of course that the immune system is always present, but not killing melanocytes. When any “bad” protein is around (either MIA, or HSP70) or if H2O2 is present, or if a cell is lipid peroxidized, there will be a likely microinflammation, so that a good immune system will be around to take care of…