hot flushes

[Chel1]

I have essential thrombocythemia jak2 for last 2 weeks I’ve been feeling very tired and also having a lot of hot flushes anyone else have this

[Endlesssunsets]

Hi there. I have the same diagnosis on a medication called Hydrea 1000mg daily with Asprin. Diagnosed in 2017 I am almost 65 yo I mainly feel tired but otherwise it’s been good I have symptoms when my platelets get too high but been well controlled . If you haven’t started meds yet, when your platelets are under control you will feel better. I lead a normal life really and I look normal so try not to worry drink lots of water that will help with hot flashes. Good luck to you in this journey. Many of us are doing fine and we have this nice community on line that is informative and supportive

[MissPenguin in reply to Endlesssunsets]

So good to read your post. I'm a newbie on aspirin only at the moment. Will start meds next year and have been worried about the prospect.

[Wyebird in reply to MissPenguin]

Oh bless you and welcome. It’s a tough time for you, give yourself time.

[ja66ck]

I have PV Jak2. I had a hot flash today while in a Menards hardware store. I had to stop what I was doing and fan myself with the hat I was wearing. I was dealing with fatigue also. I drank a cup of black coffee which helps me with fatigue. I had my blood tests done today and all of my numbers were within range, with the exception of my platelets, but they're trending downward.

[Chicagopv]

I don't have fatigue but I do have hot flashes (as they are called in the US). Mostly after I drink alcohol or something spicy, and also when I'm the least bit warm.

[Simris]

Yes very much so, 1 minute ok and next along comes a hot flush and sweat dripping from me and extremely uncomfortable, also suffer terribly with fatigue. Sometimes all this gets me down so comforting to know I'm not alone with flushes etc. Hope yours settles down... atb x

[Chel1]

Thank you for comments so this will be another thing to contend with !!

[Exeter21]

I had the symptoms whilst on HU it made me very bad & negated my HRT patches I have to use for hysterectomy. Since off it I am fine but awaiting next decision . Julia Devon UK 👍

[Exeter21]

Also any alcohol will do it as this complaint hates deyhdration so I carry bottle water everywhere it works 👍

[Wyebird in reply to Exeter21]

Yes I found I used to dehydrate without much warning quite often hence always water at the ready. It has happened only once this year though.

[Conneryfan]

Hi Chel1. From the posts I have read on here and from my own experience both are a part of ET. I am 58 and have recently started HRT to check whether that is the cause of the flushes. It can be frustrating as ET has so many possible symptoms and can mask or be masked by other things. I drink lots of water as I am taking hydroxy and the fatigue comes and goes , just like the hot flushes!! Good luck

[Grumpyfairy in reply to Conneryfan]

Hi, I’m interested to hear how your getting on with your HRT, what are you on? I’m 57, ET Jak2 Positive since 2017 on Hydroxy and aspirin. Suffering with hot flushes, night sweats, fatigue, hair loss, a lot of symptoms which are similar to ET, menapause and the medication. Would like to try HRT to see if it helps, my Heamatology doctor has said I could try topical patches, just worried about starting it.

[Conneryfan in reply to Grumpyfairy]

Hi Grumpyfairy. Love the name! I had lots of discussions between GP and consultant as I also have high blood pressure. Eventually they decided it would be okay for me to have HRT patches (estradiol) and oestragen tablets ( ustrogestan). The patches I change twice a week and the tablets are taken for 14 days out of 28. I am also on blood thinners which I understand from what they said is essential when a high blood pressure person takes HRT. The flushes are fewer but have not gone. I have no side effects from the HRT. Good luck.

[cvita71]

Yes, all the time. Unfortunately, the side effects of our MPNs (I have PV diagnosed 6 years ago) are increased sweating, night sweats, feeling of heat, burning, and redness on the skin. That's just the way it is. We have to live with it.Sometimes it gets a little better, sometimes worse depending on weather, hormone cycles, and therapy, but it is always present.

[Scaredy_cat]

I'm not sure my experience is helpful. I'm 69 and have been having hot flushes since my early 50s. I've continued with them and have been taking ruxolitinib for about a year for MF.

[Wyebird]

Yes I’ve had loads and feeling extremely hot at night. Since being on Peg I can now sleep comfortably with a summer duvet on.Even though I still don’t sleep for long.

[Cokopops]

Oh dear! How I understand you. I’m 78, diagnosed with ET 2 years ago, on hydro and aspirin. Fatigue i can deal with but the hot flushes we’re driving me mad. It was like someone turned on a switch, I could feel the heat coming on! Night and day. Spoke with haematologist and asked if I could go back on HRT patch. GP had stopped it for some reason 3 years ago. So, it was agreed between my GP and haematologist that I could go back on Evorel patches. From one day to the next those horrid flushes stopped! I still get hot but not those “switch on heat”! I got myself a neck fan..fantastic! Really helps. Hope you can sort it out and get some relief. Good luck!

[Oscarsboy]

I suffer with these all the time. I had them right from menopause and am now 74 and still have continual hot flushes. Night times I have a fan on all night as I have so many night sweats. I have mentioned it before to haemo but no suggestions made. I too am ET Jak 2 and would so dearly love to find something that would help with these. Its debilitating. I have a consult follow up on 10th August so am going to mention it once again as platelets are now down to mid 300's. I am on 500 mg per day and 1000 Saturday and Sunday.

[lynnieb]

Oh God, have I.... Also have ET JAK2 -ve. Hot flushes are THE WORST!! And in the shower, I can't get the temp any lower and the water STILL feels scorching! Horrible - I empathise

[Looolooo in reply to lynnieb]

Thats a thing i find. I have shower on lowest temp and still feels warm. Anyone else?

[Chel1]

Oh dear so just got to cope with it keep drinking the water thank you everyone

[Saine1]

Always sorry to hear when others have worrisome symptoms on top of all the other concerns we deal with. I notice I suffer worse heated episodes after I have eaten anything with sugar in it. I have ET/Jak2 and been on Hydroxyurea for almost 5 years. Before that 5 years on Anagrilide. While I have a great medical team, I find I have to do a lot of "self" diagnosis to take care of these types of problems. Blessings to you!

[lynnieb in reply to Saine1]

When I was first diagnosed, I asked my consultant if the water temp, and the fact I got burning toes were because of the ET. 'No!' she snapped, and more or less told me to stop looking for symptoms that weren't there. Of course, speaking to all my lovely fellow sufferers on here, I know the feeling of hot water and burning toes are just 2 of the symptoms. She was so dismissive of my concerns, which wasn't nice when I'd just beenn hit with the news I had ET!

[endlessfun]

Hot flashes, chills extreme fatigue can be a side effect of the Hydroxyurea. My husband was on it for 6 weeks and then suddenly started with chill, fever, shakes, night sweats, joint aches. After he stopped the HU, all the symptoms stopped. He waited a few days (& with Doc's approval) tried the pill one more time (only going to do 2-3 pills per week). He was back in bed with all the symptoms back. He again stopped and he is back to being symptom free (except for some fatigue). Don't let someone tell you that it is not the pills. Symptoms can be from the blood disorder but it can be a reaction to the pills.Good Luck

[Yoganana1]

Hi, I also have ET & Jak2 and have been on Hydroxy since Jan this year, I’ve had to change to taking it at night due to side effects which has helped me but I still get fatigue and sweats 😌 some days worse than others

I have been taking HRT patches for several years but the Dr wanted me to take a lower dose now so I was unsure if the symptoms are from ET or lower oestrogen 🤷‍♀️ I have also had terrible aching legs which again not sure what that’s from? If it’s an ET symptom?

There seems to be so many symptoms related to different things, it’s just hard to distinguish where it comes from some times

I wish you well and hope the sweats calm down soon x

[Pte82]

Chel1

Hyrea causes magnesium loss that effects so many body processes. Low magnesium has been shown to have a hot flash connection. It's also a co-factor needed to change thiamine to it's active form. Together they are components for ATP creation that may benefit your fatigue. Search on "krispin magnesium" for magnesium info. Also look up "nothing boring about boron" It helps increase magnesium absorption and retension. Alway consult with your healh care professional before using any supplements.

reliasmedia.com/articles/13...

[kacollin]

I am 57 years old and was recently diagnosed with ET CALR mutation. Prior to my ET diagnosis I was on HRT and had stopped having hot flashes. However, my haematologist wanted me to stop the HRT due to increased risk of blood clots. Now I am having a lot of hot flashes and night sweats. It is unclear to me whether they are an ET symptom or a menopause symptom. Reading the responses from others on this thread makes me wonder if it would be okay to continue with the HRT. Perhaps I should get a second opinion about the thrombosis risk? It would be great to get some relief from this symptom.