I personally have had bad reaction's with the sun but I was on two medications that had the sun warning (the other one being worse than Diamox). By bad reaction I mean when my face was in contact with the sun for long amount of times it got swollen and red, but I think that may just be in my case because my Doctor told me normall people can go out without having adverse reactions as long as you put lots of sunscreen on. He also told me I had a rare reaction that only happens to a small percentage of people so I wouldn't worry to much just warning you in case of the worse possible reaction.

One thing I know a lot of people say happens to them is that they develop very bad acne, like the deep very painful acne. For me I have NEVER had a problem with acne but when summer comes since being on Diamox I will break out pretty bad and not just on my face. If my legs are in the sun then I break out on my legs, etc. Drinking a LOT of water does seem to help and when doing that I seem to notice that I don't break out except along areas that touch something like around the rim of my sunglasses.
I know some people say they get overheated more quickly so again drinking more water would help and just being aware of the possibility of it would probably help keep it from happening.

I was wondering the same thing, I was also wondering. How much water should I be drinking to stay hydrated when taking Diamox. Im on the lowest dose, Ive noticed a difference and have started feeling better.

Hi There,

The warning about Diamox and Sun Exposure should be taken seriously. Usually inside the patient info it will tell you to limit exposure to the sun, wear protective clothing, and avoid over exertion-like playing vigorous sports on a hot sunny day.

You will be more likely to sunburn on Diamox, it will be harder to maintain hydration/electrolyte balance because Diamox effects your body's ability to regulate temperature (can keep the body from knowing when to sweat), And you will be at an increased risk for sun/heat stroke.

Here are some tips, long breezy skirts are cool but keep your legs covered, Gauze tops, Floppy Hats, Always choose a place where you can periodically sit in a shady place, bring baby wipes to cool down with, and HYDRATE!

Finally, check out the night life in your area :)

When I was on Diamox I did everything at night. I felt like I was going to catch on fire every time I went out in the sun. It was very painful and I turned red right away. My daughter would make fun of me because I spent an entire summer wearing pants, long-sleeved shirts, and hats. It was awful in 100+ heat.

Thanks so much for the help! I definitely found out the hard way that even with sunscreen, and lots of it, that I still end up with a burn - a very painful burn. I'm drinking lots of water and even a Gatorade for some extra help and applying aloe so hopefully the heat will leave my face soon. Luckily it was a cool weekend so I was wearing blue jeans and a jacket, but my face definitely got the shine from the sun. You all are amazing!

Kristena

Sunscreen is definitely important, for everyone, even people with out PTC.
When your on Diamox, of course keep using sunscreen as you normally would, but wearing protective clothing is key in preventing burns, sunstroke, etc...I mean this seriously, but having an umbrella for shade can help too...I've seen some pretty cool vintage parisols in 2nd hand stores, so you can be a PTC hipster :) And personal hand held fans are good...some of those mist water too.

Also limiting your time in the sun...I found it helpful to spend outdoor time at dusk and dawn when the sun is at it's weakest-the sun is strongest during the middle of the day, so that's when I would run for cover :)

Right on with the Gatorade...good way to balance your electrolytes, since Diamox can rob you of potassium and totally throw off your sodium/potassium balance, but always have water too. You can mix have a bottle of Gatorade with half a bottle of water and get the best of both in one shot.

When I get any sun at all, even with sunscreen spf 70, I get a maddenly itchy red pinpoint rash. I also burn.

Diamox is such a harsh drug...it's really important to follow the patient info, but also talk to your pharmacist. They are so freakin' smart! They know so much about chemical reactions, they can usually tell you which side effects to really watch out for and which ones had to be listed b/c a handful of people suffered the reaction and the FDA mandated disclosing a super rare side effect. They are walking encyclopedias!

My experience recently was that I quickly became dehydrated and had a really flushed face that evening. I was so very very thirsty and I drink liters of water daily.