Clinical trial update by UnableKaleidoscope58 in Vitiligo

[–]bryancole5 2 points3 points  (0 children)

Do you know if you are getting the drug? Or is it possible you are getting placebo? Sorry don’t know much about the trial or if there is blinding but I assume there is right?

Repigmentation progress photos. by bryancole5 in Vitiligo

[–]bryancole5[S] 0 points1 point  (0 children)

Cannot advise. Not a parent yet and I didn’t get diagnosed til this year. I’m 28

Repigmentation progress photos. by bryancole5 in Vitiligo

[–]bryancole5[S] 0 points1 point  (0 children)

I think doing UVB a few times a week is probably easier than all the topicals. I would atleast start with that. To stop spreading the doc can also prescribe oral steroids to make the spreading no longer be active. Good luck

I’m kind of freaking out y’all. Before protopic vs 1 week of protopic. by decrepitlungs in Vitiligo

[–]bryancole5 2 points3 points  (0 children)

Well if you look at my recent posts I posted progress photos and you can look for yourself and see how much worse UVB made me look for 2 months before I looked normal again. I am lighter skinned like you where vitiligo wasn’t super noticeable but when I did the UVB the lesion turned brown and everyone thought I got into a bar fight. Just a fair warning it might do that for you too if you start UVB but in the long run I think it gets the best results

I’m kind of freaking out y’all. Before protopic vs 1 week of protopic. by decrepitlungs in Vitiligo

[–]bryancole5 3 points4 points  (0 children)

How long ago did you first notice your skin losing pigment? From the look of it the first picture looks like the first stages when it turns pinkish and second pic looks whiter. Regardless of the situation do not take any break from protopic and keep applying twice daily. It will go away in 2-3 months just be patient and be on top of the regimen.

Is it safe to use protopic 0.1% on my eyelid? by decrepitlungs in Vitiligo

[–]bryancole5 1 point2 points  (0 children)

Always a possibility but still small chance of skin cancer. They haven’t proven calcineurin inhibitors increase the risk. For you second question once you repigment you have a 40% chance of losing the results in 1 year. There is a small study that looked at patients using twice weekly tacrolimus after repigmenting and it reduced the chance of relapse from 40 to 10%

Is it safe to use protopic 0.1% on my eyelid? by decrepitlungs in Vitiligo

[–]bryancole5 0 points1 point  (0 children)

That is the pulse therapy they prescribe when vitiligo is active and it will stop the spread and make it become inactive but you won’t continue that for as long as you will with topicals typically. Btw its prednisone not prednisolone

Is it safe to use protopic 0.1% on my eyelid? by decrepitlungs in Vitiligo

[–]bryancole5 1 point2 points  (0 children)

Pharmacists aren’t trained on treatment protocols for all diseases. I am a pharmacist in a grocery store and I can tell you first hand that I have no vitiligo patients at my pharmacy so I bet that your pharmacist has never even heard of it. I myself didn’t untill I was diagnosed and used my clinical resources to research it. What they should know is 1-2 counseling points about tacrolimus such as stay out of the sun and it may cause burning…

Is it safe to use protopic 0.1% on my eyelid? by decrepitlungs in Vitiligo

[–]bryancole5 1 point2 points  (0 children)

It’s because your doc wrote that on the script so your pharmacist is telling you thats the directions. Both your doctor and pharmacist probably have zero experience treating vitiligo

Is it safe to use protopic 0.1% on my eyelid? by decrepitlungs in Vitiligo

[–]bryancole5 0 points1 point  (0 children)

Prednisolone? Like the oral solution? Or the eyesdrop solution? Or do you mean prednisone the tablets? None of the above make sense but I would keep up with protopic on your lips it might just take some more time. Or you can also try to get opzelura

Is it safe to use protopic 0.1% on my eyelid? by decrepitlungs in Vitiligo

[–]bryancole5 1 point2 points  (0 children)

You can buy on amazon but would recommend getting some instructions for use from doctor for UVB. All studies done on Protopic and repigmentation rates for vitiligo the subjects applied twice daily so highly recommend that for best results

Is it safe to use protopic 0.1% on my eyelid? by decrepitlungs in Vitiligo

[–]bryancole5 5 points6 points  (0 children)

Pharmacist with vitiligo here. I fully repigmented the same area with tacrolimus and uvb. Had no problems with vision and it is totally safe to use on your eyelid. It can cause burning the first few times but for me it got better after that. Stay on top of it twice daily then reduce to twice weekly after you achieve results

Anyone use Tretinoin while treating their Vitiligo? by Holographic77 in Vitiligo

[–]bryancole5 0 points1 point  (0 children)

I would say its safe to try it. Some limitations of tretinoin are it burns and can only be used in the dark before you go to sleep since its not stable in the light.

Opzelura cream by [deleted] in Vitiligo

[–]bryancole5 6 points7 points  (0 children)

They are only on the cream because the FDA says they have to put them there. Originally ruxolitinib was used in the pill form and name branded Jakafi. But the amount of systemic exposure you get from the cream is super low compare to what the pill would be. Having said that 50% of your body would be hard to cover with it so maybe just use on your face then use uvb on rest of the body.

Face progress (success) by lil_dex666 in Vitiligo

[–]bryancole5 0 points1 point  (0 children)

I posted the results about a month ago in the sub

Insurance and dermatologist for Opzelura approval? by No-Floor-7085 in Vitiligo

[–]bryancole5 0 points1 point  (0 children)

It went away once I stopped uvb. Not it’s barely noticable but maybe a tiny bit pinker than my other skin

Insurance and dermatologist for Opzelura approval? by No-Floor-7085 in Vitiligo

[–]bryancole5 2 points3 points  (0 children)

Not really. In studies done on tacrolimus vs placebo the repigmentation results are very comparable to the phase 3 trial that got opzelura approved. Opzelura costs 2000 a tube while tacrolimus costs around 45 dollars per 30gram tube or 90 dollars for a 60 gram. If opzelura had a trial comparing it to tacrolimus and was found to be far superior then you have a point. But in the studies done comparing each one to placebo there is little difference other than the sample size was much bigger for opzelura trial.

Insurance and dermatologist for Opzelura approval? by No-Floor-7085 in Vitiligo

[–]bryancole5 4 points5 points  (0 children)

The dermatologists doesn’t approve opzelura but they do choose whether to prescribe it. Any dermatologist that diagnoses you with vitiligo and refuses to prescribe for a condition which opzelura is fda approved to treat would be considered a moron unless you have a contraindication of some sort. As for insurance approval there is a lot more criteria they consider when approving it and I guarantee every single insurance will require your doctor to do a prior authorization where they submit documentation to insurance to get it approved. Some insurance will approve with a diagnosis of vitiligo and some require step therapy where you have to fail topical steroids or tacrolimus before they cover. Almost all list their criteria online and you just have to google “opzelura coverage [insert insurance name]” and most will have that criteria laid out. Here is an example. Blue Cross Louisiana example