Hi, i have finally got a diagnosis of ET and have started on pegasys, fourth injection this week. It has been warm here the last couple of days and I have found work to be extremely exhausting. Does anyone else suffer in the heat? I work in a lab so need to wear a labcoat.
I have asked for an occupational health assessment to set up some reasonable adjustments as although work have been ok I feel a bit vulnerable with the amount of work I am expected to do.
One thing to factor in is Peg etc is very dehydrating so plenty water may help
I am not aware of any direct relationship between MPNs or Pegasys and heat tolerance; however many of us suffer in the heat. People with MPNs are more prone to fatigue so perhaps that can be an issue.
Our friend ainslie is correct about hydration. Proper hydration is very important when you have a MPN, particularly when you are using any cytoreductive medications. .
Wishing you cooler times.
I really don’t cope well in the heat (anything above 20 degrees really :)) ) I find it completely exhausting. I really notice the difference going out walking or gardening even on a mildly warm summer’s day (or wearing too many layers). I struggle! And once I overheat I find it really hard to cool down and even slightly damp skin can prickle. In fact I don’t seem to be able to regulate my temperature at all well - I also get very cold and can’t warm up. On excessively hot days, I keep very still, in my shady-as-I-can-make-it home, living on the north side! Consequently, by the afternoon I can sometimes be found wrapped in a blanket. Ridiculous. Am convinced it’s the MPN.
I can relate to all you say Ebot. My body does not seem to regulate temperature ever since being diagnosed with PV-I used to love the sun
I realised yesterday that I have developed a really odd relationship with the sun, especially having been on Hydroxy for the past five years. I absolutely love the idea (and detached reality) of blue skies and sunshine with their life enhancing, mood lifting properties (this is England after all!). I’m very happy to be out on brisk blue sky autumn, winter and spring days. But when it comes to warm summer days I find myself admiring cloudless skies and hot sun from the inside looking out. I no longer want to be ‘in it’ and I’m not sure I know how to be ‘in it’. But I still like the idea!
Since I’ve been diagnosed with et Jak 2 , I have found it hard to to tolerate the heat and was a sun worshipper before , I also get so hot at night ,
Hi Scarlett500, What dose of interferon are you taking and how often? You're saying here that you've had 4 injections in one week. The prescription would usually be around 45mcg 1 x weekly....as an example....and as you get further through your treatment you might eventually end up on fortnightly, or monthly injections.
Having it once weekly didn't causing too many problems for me..in fact it was so much better than the hydroxycarbamide. Please note that we're all different though.
There is a very informative leaflet about the medication on MPN Voice...you may find it very helpful to read it x
I realise I haven't answered your question about the heat, but I was concerned about how regularly you are taking it x
Im only on 45 mcg once per week, badly worded post. Thanks for your concern though.
Hi. Yes, I would agree with everything Ebot said. I cannot cope in anything above 20 degrees. As soon as I start to get warm I get breathless, prickly, sometimes dizzy and my legs feel like lead. The slightest activity is too much and I dread having to go out to an appointment on a warm day. I am much worse in the heat than I am in the cold, but when I do get cold I am really cold "to the bone" and it makes me feel quite unwell. I get the sense that my body is no longer able to regulate it's temperature properly. I am not on interferon but take hydroxycarbamide and have PV.
I would love to find a solution as I get quite worried during the summer and it restricts me from taking day trips or even going out for short periods which affects my quality of life.
Completely identify with this. The breathlessness, leaden legs, head slightly in the wrong place. And then that ‘cold to the bone’ feeling which definitely makes me feel ‘off’. Have to thaw out and regain equilibrium with a hot water bottle. In fact a hot water bottle is my new best friend even on days when everyone else is basking in the sun and I’ve gone all goosepimply in my cold corner. We really are on the weird side (am def blaming the PV:)))) ).
Yes it's good to hear other people's experiences on this. I, too, used to love the sun but can only go up to about 23 degrees before I feel really quite uncomfortable now.....
Hi Scarlett500 I have ET Jak2 and like you suffer in the heat. I think the heat makes the ongoing fatigue problem a lot worse, i also find it very difficult to sleep in. Thinking about it i have been struggling when it's hot for a number of years which makes me think i have had this disease for some time and well before the diagnosis last year.
Yes I have no energy in the heat. Hope you can get work sorted
20 degrees is about my limit. I want to scream when the weather forecasters say it's going to be a "beautiful day!" Interesting that a number of us here don't cope with the heat.
It's one of the great benefits of this site. If you mentioned these symptoms to a Doctor or even Haematologist they probably couldn't tell you if it was related to MPNs. So it is reassuring when we realise other people get the same issues. At least I know that I'm not imagining it all!
It's an interesting correlation but I do know quite a few other people who don't cope well in heat, ones who don't have an MPN. One of these is my sister, so maybe it's genetic in my case at least. And my Mum hated hot weather too. I'm not sure if, technically, I still count as having an MPN - no JAK2 is detectable in my blood now.
Spot on!
Sooooo very interesting. I have ET and on hydra for almost three years and LOVE hot weather but no more. Can barely tolerate the heat. Can’t stay out in the sunshine very long as I get way to hot then exhausted. And hot flashes!!! I’m 80 for goodness sakes and hot flashes!!! I can empathize with Epot as well. I’m either sweating or freezing. Everybody feels the same it seems. I haven’t seen this particularly addressed so I am so glad you mentioned it. We really are a United bunch of people!!❣️❣️ Now if only doctors would take us seriously 😳. I’m getting really frustrated.
Heat was a significant factor for me. I don't know if it was due to the condition (MF) or the meds (HU+aspirin). I am almost 5 years post transplant and no longer effected by heat like I was for the many many years prior to transplant.
Since starting Pegasys in April this year I have developed complete intolerance to heat, anything over 20 degrees.
Previously I was always cold, last summer in the hot spells I was still wearing 2/3 top layers to feel warm.
This year I get so warm I feel sick, light headed but still also feel the cold 😫
Underfloor heating
ET and affects of heat 
Coping with an MPN
