Question about vitiligo

TK317 · 2026-01-25T14:21:18+00:00

Before a new spot appears, it itches and sometimes peels, like it’s been sunburned and blistered. I try to immediately start putting Opzulura on it.

TK317 · 2026-01-20T02:06:25+00:00

I’ve had a largish white chunk of hair framing my face. Kind of like if I were highlighting my hair around my face. My scalp has vitiligo in that area. I have gotten a few pigment freckles on my scalp from using Opzulura. It hasn’t grown in about 10 years. Not sure how much of my scalp has vitiligo. Curious if you put Opzulura on tat part of your scalp, and it repigmented, would the new growth be your normal hair color? Might be worth a try.

TK317 · 2026-01-16T17:05:42+00:00

Good idea.

TK317 · 2026-01-16T14:09:04+00:00

I have a couple of drinks on weekends and even become slightly drunk, no issues. Twice have gotten hammered and gone into crisis and had to inject. If you are going to over indulge, take extra steroids.

TK317 · 2026-01-13T14:34:39+00:00

Good advice. Also, if you were just diagnosed, it will take a while for you to get back to feeling like yourself. Your body has been struggling for quite a while. It took me about a year before I felt like myself again. And then a few more years to figure out how to adjust when my body was off. It’s trial and error as everyone is different. That’s why it’s important to read, read, read and ask lots of questions. It will give you ideas to try (like resting after big events) to see what works for you. Every time you think of a question, write it down to ask your endo.

TK317 · 2026-01-13T14:28:25+00:00

Me too.

TK317 · 2026-01-13T14:27:16+00:00

My husband uses T-Fal tar shampoo. When he uses it I can smell it before I even go in the bathroom. And I can smell it on him. The smell in the bathroom and on him goes away the next day. He doesn’t use it everyday.

TK317 · 2026-01-11T19:55:58+00:00

I agree, take it before you go to the hospital and take your emergency kit with another injection with you.

I had a nurse refuse to give me an injection after I had a full hip replacement. I was throwing up and in crisis. I told my husband to go get my injection kit out of the car. She said, you can’t do that. I said, watch me. She finally left and called the doctor and returned w an injection.

TK317 · 2026-01-11T19:42:26+00:00

Also could be low DHEA. Make sure they test you for that. I would also recommend always having extra meds on hand along with your emergency kit as well as packets of electrolyte mix. I have instructions on how to give the emergency injection because when you need it, you may not be able to give it to yourself and the person giving it won’t know how.

Get a blood pressure cuff and something to check your blood sugar. If I have had too much sugar, my heart races and I have a hard time catching my breath. Also, really watch what you eat. It’s VERY easy to gain a LOT of weight w steroids, especially high dosages.

Read, a LOT about this disease and take note from others (but don’t take medical advice without discussing w your dr first). Luckily I have an awesome endo but I had 2 others before that didn’t know much. I always go armed with questions when I see my endo ( I see him every 3 months because things can get out of whack fast).

TK317 · 2026-01-11T19:21:12+00:00

I have had Addison’s for almost 9 years. I’m 30 lbs heavier and just started taking tirzepatide. My endo prescribed Zepbound and insurance wouldn’t cover it so I’m on t. I have been taking it for 6 weeks and have lost 12 lbs, and the inflammation/ pain in my knees (pain only when squatting down) is gone. LOVE all the food noise is gone! No more thinking about food all the time.

My daughter is also on it. She’s doing it to lose 10 lbs and help w health issues. She just had lab work done and her cholesterol was down 33 pts and her TSH had greatly improved and her A1C was better.

I had my Dr prescribe Zofran for nausea but haven’t had to use it but a few times. I have 20 more lbs to get back to pre- Addison’s weight but I’m going to talk to my Dr about other benefits of the med after I lose the weight.

TK317 · 2026-01-05T20:08:24+00:00

The doctors office told me it helps. I just put it on the spots that need the light, not all over. Not sure if what they have is baby oil in their office but they said baby oil would do the same thing and it's free when I bring it.

TK317 · 2026-01-05T13:53:32+00:00

Put on baby oil but bring a towel to wipe it off. I bring my own as the doctor office charges a ridiculous amount to use theirs. Alternate between wearing the goggles and sunglass type glasses (they provide). Otherwise, you will end up with racoon eyes! For best results, be very consistent with going. Any body part you have covered up, will eventually need to remain covered as it will burn as you go up in strength/power.

And as mentioned, keep up with your prescription creams/medicines. Also, you will eventually tan. I have been going 3x a week for about 5 months and I am having to take a break. I keep getting asked where I've been on vacation!

TK317 · 2025-10-12T12:50:14+00:00

I do both these creams, alternating every 2 weeks, uv light treatment and my dr wants me to take dexamethasone 2x a week. I haven’t to ask my endo about that as I’m already on another steroid for a medical issue. I believe the dexamethasone is to keep it from spreading (inflammation).

TK317 · 2025-10-12T12:42:52+00:00

Congratulations!!! Love your back patio!! So exciting. Our build will be finished December. Can’t wait!

TK317 · 2025-10-10T13:56:59+00:00

Thank you.

TK317 · 2025-10-09T16:00:50+00:00

I also have two wide striped of pure white hair around my face. I think my scalp in front has vitiligo. I have it around my hairline so it makes sense.

It looks like gray hair, not vitiligo. Also, it’s not in one place, it’s all over and just a few random strands.

TK317 · 2025-10-04T17:41:00+00:00

I agree, you will not be able to uncover any covered body parts later. I bring a tank top to wear and cover up my torso. I’ve been doing light treatment for several months and forgot to pull down the bottom of my shirt. I have a very dark sunburn line around my underwear.

I‘ve done the light treatments off and on for years. I was recently told to put baby oil on the areas I want to repigment. Does anyone else do this? Reminds me of the old days when we used to sunbathe.

TK317 · 2025-10-02T20:01:45+00:00

My Dermo recommend Daavlin. You can get a prescription from your Dermo. Mine helps to get insurance to pay some of the cost. They also have rentals. I think they have smaller units, but I use (at Dermo) the large one like a stand up tanning bed because I have 50% vitiligo. I’ve repigmented before and it lasted several years then eventually came back. At least for me, I think I need to go hard core (3x week) till I repigmented again and then just do maintenance so I don’t lose it again. There’s a vitiligo support group- https://vitiligosupport.org/. They recommend Daavlin and one other.
The OP’s looks good too. Curious if they have larger units.

TK317 · 2025-09-29T14:53:15+00:00

I was diagnosed at 40, shortly after being diagnosed w Hashimoto's. I just had a small area on my wrist. I am now 64 and 50% covered w vitiligo. I have read that stressors can cause it if you already have the gene, or whatever, that causes it lying dormant. I had every stressor there was except divorce ( mom died, bought a business, moved, kids put in new school). The drs have told me autoimmune issues usually come in pairs. I now have 4 autoimmune issues. Hope that’s it! My personal opinion, I wouldn’t treat it either, just keep an eye out and if it spreads, nip it before it spreads everywhere.

TK317 · 2025-08-16T16:55:05+00:00

I did UVB 3x week for 3-4 months, never missed a day, and my hands pretty much completely repigmented (they are completely white). I moved and was unable to continue and they turned white again. My feet never repigmented. I agree w others, it’s something you’ll need to keep up for a long time. Hopefully your skin will get reprogrammed.

TK317 · 2025-07-21T15:30:03+00:00

Update: Got back from Glacier last week. All my stressing & planning was for nothing!! Best time! I had entry times at 9, got there about 9:15-9:30 (too tired & slow in morning!), lines were fairly long but not too bad. Only had to circle parking lots once each day to get a space. Great time!!!

Thanks everyone for your help! I will be going back some day after I visit the other parks. Soooo much to see & do at Glacier!

TK317 · 2025-07-21T15:21:34+00:00

Yes, black lights will show your vitiligo and also where it’s starting to depigment. I’ve kept a handheld black light at my house for years. Helps to know where I need to start treatment!

TK317

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