Problems with the sun/heat

[Rastavapa]

I used to love the sun when I used to live in southern Italy it got to the forty's in the summer but since I changed years ago from hydrea to interferon then pegasys and now jakafi, I just seem to get really sick and have really bad headaches that last for days after being out say fishing or just going out in it. I wear head protection and sunglasses etc, I just feel like there is always a stupid side effect that gets on my nerves, what a kruel side effect not being able to enjoy this weather, anyone else have these same problems??, take it easy nick

[Helpatlast]

Yup I do!! I am really struggling this last week or so with what is lovely hot weather in the U.K. I just can't function (I have ET) - fortunately although I usually work afternoons in a busy office my boss has let me work mornings instead so I can leave as it gets really hot in there. Worst thing I find is light headedness and wobbly. Spent a lot of time at home with fans on. Oh well gives an unexpected rest I suppose!! But yes while everyone is loving it, I just want it to end and as usual not something people will understand bar other MPNers!!

[Rastavapa in reply to Helpatlast]

I have et also, it's good your boss is accommodating like that, it's good we only get so much of the sun it will all be gone in a month or so

[yarrowleaf]

Hi Rastavapa !! So sorry that you've "joyned the club of shady creatures" I have a feeling that Hydrea is the only stuff who doesn't make you photosensitive -- Cause photosensitive ´, I presume, you've become.

Photosensitive is not just sensitive to the sun but something much more serious which the doctors do not admit- (but the vets surely do).

What happens is that the light inflicts on your white bloodcells, so the normally evergoing healing process is disrupted. Normally one catch fever ( and even colds), headaches, skin wounds (or excema), painful flush.

I worked with a vet in the 70s in North Africa and we tried to help the sheep who got it--mainly because they were eating St. John's Worth, which can cause Photosensibility.

We could not do much but the vet found out that if we coloured the sheeps' fleece with henna they started feeling much better. (the colour red is fencing off light)

OK --that could not be used generally because of the shearing (for wool ) or for selling the fleeces as white But it helped. What also helped was feeding them Quinine !!!! And that helped a great deal because it lowers the body temperature .

So-- There is no legal medicine -- and you cannot keep on staying out in the sun, I'm sorry.

1:What you can do is ask if you possibly could go back to Hydrea

2:Ask your doctor if you can have quinine ( it is hard on your stomach, but bearable) if your doctor will not give you quinine-- you have to do with 3: "Indian Tonic"-- and loads of it There is natural quinine in it. It was made especially for the Englishmen living in India during the time of the Empire.

I take a long ride at 4 in the morning-- have luckily found a night-job. After 6 I cannot go out for more than a few minutes.

But grey and rainy days a my days -- and for you who seem to love fishing-- they are perfect, cause the fish are easier to catch when it's cloudy

Don't go back to Pegasys -- even the scientists are now talking about it causing Photosensitivity !!!!

PS --- Maybe you also drink too little So before I make you sad with all my limitations--- try to gulp down as much water as you can manage for a 2-3 days and then see how you feel. You should also lower your intake of tea and coffee because it is diuretic !!!!

I cross my fingers that you have been unwell because you've been drinking all too little water (drink about 1,5-2 l. a day in the hot time), but if water does't help, then-- try to find a job at night-- if it is possible for you. Then you can sleep away most of the day.

Good wind -- my hope is with you.

Yarrowleaf

[Rastavapa in reply to yarrowleaf]

Now this makes sense as I was started on hydrea and was even on it while in Italy and never had a problem, unfortunately I became anaemic after a long time on it so was changed to interferon which was horrible then pegasys now a trial of ruxolinib so I can't change atm, I do drink alot anyway maybe not enough the last few days and I like my tea and coffee.

Funny you should mention India and the empire my dad was born in comphur and is Anglo he came to England when he was about six my grandfather used to work on the railways in India unfortunately we are the last remains of angloindians lol

.. Although they spread around the world. I will look into the quinene stuff and make sure I drink more, thanks for the reply

Take it easy

[LucyGeering]

Ah, sorry to hear this! I have ET, am only on aspirin but frequently get heatstroke in summer, and have done for years. The best thing I find is drinking lots of water, frequently, throughout the day, wearing a large hat and loose clothing in natural fibres to allow body heat to dissipate and for better ventilation, and taking paracetamol when I get too feverish. The quinine suggestion above is great!

[Rastavapa in reply to LucyGeering]

Never heard of quinene before so gonna look it up it sounds like I did have heatstroke though had such a bad night with it so was really careful today and stayed in. I have et too btw

[katiewalsh]

Hi. I have a horrible reaction to heat, especially when it’s also humid. I’m on hydroxyurea, have ET jak2+. I installed an automatic starter so I can turn on my car & get it cool before getting outside and I use hats, and a battery powered fan attached to a bottle of ice water that I spray myself with. I even use my handicapped permit on really bad days so I can park closer to the store. Good luck to you! Katie

[Bridie123]

Well that's a relief! I thought I was a freak😎,crawling in and of the shadows.

Seriously though, it was while working in a hot spa that led to my diagnosis of ET calr. I had what I call my fake heart attack, after months of disturbing symptoms. After angiograms and suchlike all that was found was the ET.

I take hydroxycarbamide, eleven a week and clopidriol. I now find the heat affects me even more! And the sun stings my skin . I no longer work because of the fatigue and other symptoms.

Regards to all my shade loving friends Carole

[beetle]

I am permanently hot and sticky in this weather. I have taken to wearing special cooling scarves round my neck which help a bit. I definitely don’t sit in the sun and hide from it where possible - bad news for vitamin D (but I take a supplement) but good news to avoid skin cancer which is a given risk with HU. Just as it starts to cool down a bit in the evening I start up the night hot flushes! I have started sleeping on a gel cooling pillow to help these. We operate on a tight budget so I try not to use fans for any extended period. I love to see the sun but just wish it could shine with a little bit less heat😂! Unfortunately we get little chance to acclimatise in the UK as the weather is so variable. Keep cool and drink water often. Best wishes, Jan

[Aime]

I’ll join the “cool club” too. I have PV, not on meds but struggling with heat. Couldn’t even enjoy my grandsons birthday party yesterday, went home early feeling yuk, despite staying in shade and drinking lots of fluid, no alcohol! Every sympathy, kind regards Aime 😺😺

[Graham7694]

I am on Ruxolitinib and have to say that I am finding it difficult in the sun! I have increased my water intake and am trying to do 3 litres of water per day. I have bought an electric coolbox to keep in the car and that helps as warm water is yuk!

[Roger41]

My body is reverse.

I seem to respond well to the sun.

Keep hydrated and factor 50 every time.

[EleanorPV in reply to Roger41]

I’m Similar, I feel far more alive in warm weather.