ET and affects of heat

[Joe1]

Hi Does anyone with ET and Jak2 suffer from heat exhaustion after walking for a couple of hours in the Sun ? Frustrated golfer

[clubdino]

A couple hours in the sun? 😂 I would die. I am very heat sensitive...I wouldn't last 10 mins in the sun seriously. Something that may help you is one of those cooling towels that you can put around your neck. Also I think there are cooling vests too but they are a lot more expensive.

[Joe1 in reply to clubdino]

Excellent thanks for this , I used to be a sun lover , now I am cautious and have a had few scary moments . I’ve tried going out early , fans using a buggy , but if the heat gets up that’s when I get a problem usually after a couple of hours and comes on very quickly ! The vest and scarves sound a good idea . Thanks

[Hidden in reply to clubdino]

Joe1

Thanks for the laugh. Hire a cart and but a cap with a little face fan. Drench a face washer in the freezer overnight and put it on the back of your neck. I'm with our colleagues who said they wouldn't last 10 minutes. Take your time.

Anna X

[Instow1 in reply to Hidden]

hello joe1. Yes I could walk in any sun all my life till ET Now I can't take more than 20 minutes

[fee13]

Vests and scarves are a big help. I have a cooling blanket that I have to put over my legs in summer but it is very heavy. I cannot do much sun or heat at all, only last about 10 minutes & the glare can bring on instant migraines. Opposite effect in winter when even a slight chill can render my feet & fingers numb & white.

[Jenny_F]

I find I swell up a lot in the heat and my joints hurt. Its hard when you play golf, I started learning it last year myself, but I am worried about being on a course in the heat for too long too.

[Joe1 in reply to Jenny_F]

Good for You Jenny. Golf is a great sport. I live in Scotland and have played for the best part of 50 years , still trying to get better at it !

[Jenny_F in reply to Joe1]

I dont think there is such a thing as a perfect swing but I enjoy practicing it!

[Anag]

Hi Joe1,

Thanks for talking about this. My doctors have yet to respond to this. I, the sun-hungry Greek, who used to bath for 8 hours straight, became increasingly sensitive in the last 5 years (ET started 10 yrs ago), but the real problem started about 3 years ago, after my diagnosis and beginning of meds: Aspirin and Anagrelid. I’m not sure if one of those is the culprit. I just know that that I feel the weakness coming almost instantaneously as soon as the sun touches my head or skin on my sensitive days.

I can faint after 10 minutes in the hot sun. My knees go weak, my body starts to shut down. It doesn’t even want to make the effort to breath. But! This is not always the case! Sometime there is absolutely no problem, other times it’s paralyzing. Last year in Jeju, Korea, I could hardly walk during our last little island tour and then was awake and running as soon as I got into an air conditioned building. Then I was in Greece with 35C, with absolutely no problem except for one day. What helps me is wearIng a big hat and keepIng my head and scruff of my neck off limits to the sun. Instant relief comes from putting water on my neck and/or head. Also good on the upper arms.

Hope to have helped. Anag 🙂

[Joe1 in reply to Anag]

Hi Anag ,

Yes just like you, I loved the sun and can tolerate to an extent , providing I am not exercising and if it is not too humid ! Joe

[Bridie123]

Hi, I have ET calr and the heat makes me feel very unwell, exhausted like I am encased in lead. I love being outside so it is difficult.

I am going on a ( socially distanced ) dog walk this afternoon with family and the route is being checked to see if there will be enough trees for shade and rest 😅

[Bridie123]

Oh I forgot! My husband and I have got these Australian hats that are made of some stiff felt like material that has air mesh round the crown and a wide brim , you soak them in water. This dramatically makes a difference.

[Joe1 in reply to Bridie123]

Thanks Bridie , I will investigate the hats , I’ve been also thinking about UV 50 clothing that might help ? Regards

[Bridie123 in reply to Joe1]

It is very expensive, I cannot afford it so it is just cotton or cotton mixed for me 😉

[wotan10]

Greetings from Fleetwood England.

Tempretures in the 26 ish.

Been out every day since13th March.

So long as I drink my water before I go out. I am fine for one hour. I do 3miles per day , usually between 9 am/ 10 am.

I am fine.

On medication for ET , aspirin and hydroxicarbinide two per day.

Found my tolerance to the Sun has improved since diagnosis.

[Joe1 in reply to wotan10]

Thanks for reply Wotan , I was diagnosed aged 49 which was about 8 years ago - 2 years after an MI , which it turned out was probably caused by the ET ! On aspirin and 2Hydrox tabs , feel pretty good reasonably fit , enjoy yoga , golf and swimming some which have been on hold recently ! Be positive and keep well ! Regards

[Ladygolf]

Hi Joe1

I am also an avid golfer diagnosed with ET 15 years ago. 18 holes of golf mean at least 4 hours in the hot sun. When it is hot now (over 30 degrees) I ride a cart. I also have an electric cart which makes walking far easier as it pulls me along. I drink tons of water. Staying well hydrated is hugely important. I have cooling towels but must be very careful using them because they remove the sunscreen I must wear. I use 60 sunscreen on my body and 100 on my face, ears, neck. Hydrea makes your skin more susceptible to skin cancers and as a blue eyed blonde I have had more than my share. I get checked by a dermatologist every 2 months and he burns off or digs out basil cell or Squamish cell carcinomas every appt. No melanoma yet🤞 I have fainting spells in the heat which is compounded by having to wear a long sleeved SPF50 shirt under my golf clothes. I now wear a large brimmed hat (not easy on windy days) and two golf gloves. I switched to Anagrelide 2 years ago and the heat and sweat make my itchiness worse.

Golf is an inconvenient sport for people with ET especially if you are on meds, however the exercise and social interaction is very beneficial to our physical and mental health. Please keep your skin covered as much as possible, wear sunscreen and STAY HYDRATED! Even if your doctor tells you there is no relationship between hydrea and skin cancer, don’t believe him. Do your own research or see an MPN specialist.

[Doggy555]

I live in a sunny, hot climate. I try to go out late in the day. I wear Sunblock shirt( 30) over my swim suit and use sunblock 50 to 100 on my body as I burn easily. I also stay in the shade and try to wet down. Also hydroxyurea can contribute to skin Ca, so I was told to stay out of the sun. When out on a boat I used a big sun hat and covered with a towel. I don’t tolerate heat well at all

[Otterfield]

I barely last two minutes in hot sun! I have ET, now on Pegasys. For years I have struggled, even if I stay indoors, unless I have a fan on full blast. My hobby is walking so I do sympathize with your golfing issue.

[Snagglepus]

Hi Joe1. I have purchased cooling towels. Long like a scarf. When you wet them they go ice cold. I have a couple and keep one in a ziplock bag in the fridge at all times. You wet them with cold water shake and voila! Ice cold towel. If you have water stations around the golf course they would be ideal.

Look for Cool touch ice towel. X

[Joe1 in reply to Snagglepus]

Thanks snuggleplus I will look into this !🤙

[Gaithersburg]

Hi Joel, I was surprised by your post, and lots of replies, as I have ET (and have had for 27 years) and take Anagrelide and Aspirin and I have no problem with the sun and have never had. I sat out in the sun in West Sussex yesterday which was 26 - pretty intense and no problem. I do however have quite dark skin and rarely burn. I usually play tennis year round and look forward to starting it up again soon when we are allowed to. However during the summer I am often in the heat playing tennis for at least 2 hours. I hope that you work out how to cope with the heat as it's sad to stop the sport you enjoy. Best wishes,. Lisa

[Folly41]

One can get a sun hat in the UK from TK Maxx, it costs about £20