Hi, hope you are all ok. I have PV, but is anyone else feeling really unwell with this heat. Although I am not feeling really over heated, but I am feeling very odd, my head feels like it belongs to someone else. My blood pressure is really low for me 114/82 I’m not sure if this is all because of the weather we are having at the moment, or if it’s my blood. I have my usual blood test on fri which is good.
Xx
Hello Yvette,
in case it's any help, I also struggle a lot more with the heat now, compared to the past.
Also have a PV, diagnosed January this year; I cannot really tell why, maybe it has something to do with the phlebotomies or with the iron deficit. In the end it doesn't really matter, jut wanted to let you know, that you are not alone.
👍😉
Ah thank you so much, nice to know I am not alone 🤗🤗
It is your P V,always when it is very hot you must make sure to keep cool.12 years ago when I was diagnosed my consultant warned me re getting overheated & of course the strong sunshine.Yes you can feel so poorly when it's warmer than normal.I live & my treatment is in S W France. We are used here to extremely hot temperatures,shutters are closed ,air coolers on day & night,I do not go outside except very early morning,nights are often in the 30 s,I know also that I tolerate the warmth less as each year passes.Cool water sprays are good to cool the body,but most important stay indoors do absolutely nothing physical.I am English so I know the heat will not last long.
Keep calm & cool,you will be ok.Best Wishes Yvette.
I used to live in South West France in Lauzun . I have EtJak2*. Glad we returned to Uk as I found the weather too much in July and August. Also got bored after 8yrs. Living in Devon now. I suffer with vasculitis in the heat. Very difficult . I Stay inside as much as possible in hot weather. Anyone else get vadculitis ?
I am with you on the heat and the humidity. It is sweltering here. Thank goodness for air conditioning.
Regarding the BP, that sounds like good news. Having your BP down in the normal range is a sign of effective PV treatment. Controlling the hyperviscosity definitely has benefits. I used to be in Stage 1 hypertension and now have a resting BP around 115/75.
All the best and stay cool!
I have higher BP since I got diagnosed (140/90), but never had issues before. Any recommendations how to get my BP down? I exercise a lot, have no extra weight... don't know what else to do. Any inputs are welcome.
Thanks and take care!
I am on Sotalol, which works for me,….keep cool X
Thanks!
That is about what my BP used to run. You already have the weight down and exercise, which does matter. What worked for me was getting the HCT under control. Hyperviscocity increases BP. The blood flows better when it is not as thick. I used to take the minimum dose of losartan, but I started to get some incidents of hypotension, so we cut that in half. Controlling the HCT and the very low dose of losartan along with weight loss and exercise are what worked for me.
Thanks!
140/90 is a little high. Might need treatment, best to check with your GP. Good luck to you.
Yep will do. My GP actually knows about, but wasn't concerned at all
🙄
Hu Hunter, mine is never that low though, so was a shock. Lucky you having air con, I just have a fan, effective though 😁
In addition to AC - I have a river. Have been known to go jump in it. Another great way to beat the heat. 🥵
Oh thanks Inca, so good of you to reply, I had half heard about staying out of the sun but wasn’t really sure. Thanks so much 💞🤗
I have had a strange experience this year. For quite a few years I have really struggled, to the point where I couldn't bear to leave the house if the temperature went above about 23. However, this year I am coping much better even though I now have MF. Perhaps it's another miracle effect of Ruxolitinib - who knows? I still get uncomfortable but I have been able to walk 2 miles slowly in 27 degree heat. Weird!
Wow 🙂👍
That's great for you.Wish I could say the same!!!!I think that I tolerate heat less since Rux...maybe I am just getting older. We are all different I guess.Keep going ,best wishes.
Sorry to hear that. I don't know for sure that it's the Ruxolitinib but I can't think what else.
Hi. I have a hard time with heat & I get overheated really quickly. I did buy a cooling vest to wear if I have to be outside. I don’t know how to translate temps from F to C. But here in southern Florida in the US our temps are in the 80’s with heat indexes around 100 degrees. Hope you can adjust.
Hi Katiewalsh,
I have been considering getting a cooling vest. Can you let me know how well it works for you? I am in SoCal and it has been hitting mid 90's, but the low humidity helps.
Hi. It works really well. Because you’re in a dry climate you might be able to just use an evaporative type vest, scarf, hat. If you tell me what type of activity you want to use it for & duration, I can share what I learned from hours of research. There are at least 4 different types of cooling methods & then with distinct advantages among them & then you pick the type of vest based on which method you want. And I can let you know what I chose & why. Katie
I had been seeing them advertised and was wondering how well they worked for people doing manual labor outdoors in dry conditions. I am a gardener and for the most part I can get the work done early enough to not have to deal with the heat. I am also a big fan of covering up to keep the sun off the skin and using wet cloths about the neck and head and never being without water to drink and drinking it before I am thirsty.
But if the weather follows the usual pattern we will be getting consistently in the 100's during August and September as we are currently getting our August temperatures now. I am not sure that the evaporation techniques will work well enough. We are so lucky that it cools off at night, but our cooling off will be in the high 70's if we get into consistent 100+ days.
Hi. I spent a few days researching cooling vests & used the MS website in addition to pouring over descriptions & reviews. There are 3 basic types of cooling if you don’t plan to just sit still. Cheapest is evaporative where you wet an item, snap it & put it on. As it dries it will cool you down but only if you’re in a dry climate. The other two are vests etc filled with either ice or gel packs which are frozen. Ice isn’t good because it cools your skin too low causing your body to try & warm you up. Gel is best because it only cools you to a comfortable temperature which means your body doesn’t try & heat up to compensate. I really like the company ThermApparel & wear their “Undercool” vest. You wear it under your clothing but I wear a thin tshirt under it to absorb perspiration. It also doesn’t have cold gel over your breasts which sounded unpleasant to me. All the ice is in the back. It’s the most light weight of all vests I found (very important) and their customer service is phenomenal. Buy directly from the company please!!!! (This is true whichever company you buy from) Their price is the same as on Amazon but if you buy through Amazon the company loses a huge portion of the cost of the vest. It’s a small company and will bend over backwards to help you make sure you get a vest that you’re happy with and you can return it if you aren’t. . The vest are unisex sizes. I’m 175 lbs, 5’ 7”. I wear a men’s large. I bought both ice packs, regular & long duration so I can pick based on how long I need them & have extras. I did try one other vest but really disliked how bulky & heavy it was. If you’re in decent health & strong you could consider a cheaper heavier one. Another important consideration is whether the entire vest needs to be frozen. The Under Cool I bought has long narrow rectangular shaped gel packs which stack easily in the fridge without taking up much space. Which ever vest interests you most,see if they allow you to wear it once outside to see if it works for you. Good luck. Katie
Fantastic! Thank you for all your research. And I will go direct to the company.
You’re welcome. Good luck & let me know what you end up with.
Thank you for this information! I'm in California and we're headed into another heat dome -- this is exactly what I've been looking for.
Thanks so much for this, Katie, I myself was researching them the other day in anticipation of our next summer down under but I gave up, thinking really the only ones that would work during a black out (quite likely, I fear) are the battery operated ones, an impossible option. But this has given me a new lease on the idea and I’ll try and find exactly what you suggest in Aus. Such great info, thanks again!Years ago when I endured hot NYC summers with minimal AC I’d hang a bag of ice in front of the fan, it really helps in the bedroom if your A/C doesn’t penetrate that far.
I have also just bought a really large collapsible esky to fill with those big bags of ice should we lose our electricity.
Lots to look forward to….😉
Wishing you all the best.
Central Florida feels like 102 today!
F = 1.8 x C + 32
I have a terrible time in hot weather. My feet and ankles swell and go red, as does my lower legs. I think its because thicker blood has a bad time getting to extremities. Stay in and stay cool. I have stopped exercising as well while we have this heatwave.
I have Essential Thrombocythaemia and can't take the heat at all- I asleep a lot-then my hip/thigh joints lock and I can't move my body very well-I just feel so awful most of the time-lifeless! My blood pressure usually on low side.
Hi I am really struggling at the moment. I have ET Jak 2 pos and my symptoms are managed quite well, but past few days my whole body is in pain and just feel awful, the pain is like in my bones, feel as if my platelets have gone up. My job has changed too past 5 weeks, so from walking round a lot on a daily basis I am now sat at a desk all day and was wondering if this has something to do with it? As I have this theory that when I’m moving around it keeps my blood moving around so keeps it from thickening up! So maybe a combination of both?
Yes I echo what others have said. Swollen ankles, sweats, weird head and the need to cold shower fairly regularly. It’s lovely to have a warm summer in the UK but this is too much for me.
Hi all amazing how many people are affected in similar but so many different ways, I have had PV for around 16 years and was thought to be progressing to MF however, the years of PV have enlarged the heart and I'm awaiting cardio advice. The fatigue has been overwhelming and I can only sit in front of a fan most of the day during this heat wave, a bit of a shock to now have 2 chronic illnesses, I'm expected to be at stage c/3 of heart failure but with luck, have a few more years left yet! Take care all⚘
I have ET and suffer badly in the heat. I feel sick, have headaches and feel so weak can barely stand up. Haematologist told me to drink plenty, so I am trying to do that. I am doing bare minimum in household chores, the rest of the jobs will have to wait until the weather breaks. I have big Tower Fan which is a blessing. Roll on Autumn!!
Ha ha same here, jobs can wait…..🤗
I Have had PV JAK2 positive, and live in Anch. Alaska but frequently travel to Arizona. I'm just the opposite. I mentally and physically thrive in warm weather!! It recently got up to the 80's in Alaska and played the best round of golf! (80's here feels like 90's) I contribute this to warmed up joints/muscles and believe the blood moves better in the warmth. I've also read that ultraviolet light is a treatment for PV. Kerry
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