Hi again everyone !! As I mentioned I have been diagnosed 2 yrs ago with PV jak2 ....... my question is does anyone experience intense sweating episodes which is a PV symptom... anyone suffer with that ????
I used to get the episode maybe once a night then 2 but now I’m getting them a couple times during the night and a couple of times during the day..... it’s awful .... the sweating is so intense !!!!
Investigate the following as JAK2 inhibitors: vitamin C, curcumin, quercetin and astaxanthin. Look for liposomal versions of each or research how to make liposomal supplements. Quercetin is mentioned in the "townsend letter myelofibrosis" as is astaxanthin. My wife uses 10 ml of liposomal vitamin C and 5ml liposomal curcumin three times a day and just before bed to control itching and night sweats.
Thank you Pte82..... I suffer with both sweating and itching... I will definitely investigate !!!!!
Hi, I have ET with Jak 2 positive. I sweat very badly and I get very nauseas. I have actually vomit. I get soaking wet like I have claimed out of a pool. I have to take a cool shower because of sweating. Hot water is not good for me. I am taking Hydrea.
Hope your sweating subsidies with you.
Take care
Wilma66, Hydrea causes magnesium loss. Early symptoms of magnesium deficiency can include nausea and vomiting, loss of appetite, tiredness, and weakness. Low magnesium also results in thiamine deficiency as vitamin B1 needs enzymes created from magnesium to become it's active form. Please research the importance of thiamine especially for your eyes. Search on "krispin magnesium" for other causes of magnesium loss and suggested restoration. Try the protocol I mentioned earlier using liposomal forms to control sweating. Always check with your health care professional before using supplements.
I also have had Jak2 Pos PV for 5 years, and I am grateful that my worst symptom is night sweats. I deal with this by lying on my back and 'chilling out' - it passes fairly quickly most times. Oddly it seems worse in the colder weather, I suspect it is due to not being able to throw the covers off. Good quality cotton sheets help too. I count myself lucky that most of the other symptoms seem to miss me!
Bob.
Hi AirconBob... I also get the severe pinching/itching/stinging and when I have those sweat attacks off and on for most of the day, it sets off the pinching and the I’m a total mess!!! Good to hear that’s your only symptom.
Hi Keiks, I"m 59 and was diagnosed with PV last April , I still have night sweats and go to bed with a cotton scarf round my neck, like a baby with a bib,cause since having the sweats i have skin tags around my neck which have appeared from know where , its very uncomfortable, does anybody else have this problem
Oh vanlady I’m sorry your having that problem from sweating !!! I don’t have that happening and I feel like nothing I do helps with the sweating .... even with the a/c on I have to have a fan on me when I’m going through it .... it’s awful !!!! Hope things improve for you!!!!
Hi Keiks, I have too many red blood cells but no mutations identified, so I’m classed as having idiopathic erythrocytosis. I get bouts of night sweats which can sometimes lead to proper chills.
My gp has done all the autoimmune blood tests as he thought is was perhaps something to with the large amount of joint pain and inflammation but nothing positive there either. I also suffer from the itching.
Cotton nightclothes, sheets, etc helps, so does a drink of cool water but I’m sorry I can’t advise much more but can only sympathise - not pleasant and very tiring.
Kindest regards
Aimexx😻😻
Sorry your suffering with those symptoms Aime ..... I’ve tried just about everything and nothing works for the sweating and the pinching/itching was off the wall today and I do so much to try to reduce that but most times nothing works .... I just hope that these are symptoms that eventually fade because it’s just unbearable!!!! Quality of life suffers badly and people just don’t get it !!!! Hope the best for you !!!
Tons of moisturiser and pints of water seem to help the itch. As do antihistamines, cotton clothes and bedding.
Hope the sweats and itch ease soon. Take care Aime xx😂
I am PV Jak positive and have experienced night sweats. I seem to be managing these by having layers of bedding which can be removed and replaced easily as my temperature varies. I certainly have much less bedding on than I used to so I am only just warm enough when I go to sleep.
Hi Keiks. I too was bothered with sweats.i couldn’t even go shopping, without it happening, it was so embarrassing.
G P has prescribed Propantheline so far it has worked ,although haven’t been to town because I was shielding.
It makes you drink more water, because mouth gets very dry ,but in our situation we have to drink lots of water anyway.
Hopes this helps Anne
Hi youngpoppy.... I didn’t realize that there was a medication for this.... I will talk to my GP.... it is so embarrassing... just awful!!! Glad it’s working for you!!
Hello Keiks,
I think I was misdiagnosed with JAK2 by a very unprofessional doctor that wanted to put me on Hydrea, I refused the drug but I was experiencing night and day sweats.
I mentioned to my primary doctor how unprofessional my cancer/blood doctor was and he recommended a new doctor.
I was diagnosed with MF after a bone marrow biopsy. My new doctor put me on Jakafi and I no longer get the sweats.
Ask your doctor about Jakafi and see if he/she can put you on it.
Good luck and I’m praying for you and everyone else who is facing all these problems 🙏🙏🙏
Hi Plumberasscrack!!! LOL! The name is hilarious!!! Isn’t Jakafi an extremely expensive drug and one that is given only if hydroxia is not well tolerated???
Yes, this drug I’m on is expensive and I’m not sure if it’s given because not tolerating Hydroxia.
Ask your doctors if this will work for you and see if your state has a program to subsidize the cost.
Good Luck, Stay Well
When I had a hysterectomy in 1993 I went straight into menopause and hot flashes never went away until about 3 years ago and then just stopped with an occasional episode. Last year they started up again and since the beginning of this year has gotten worse. Guess what? I was diagnosed with ET. in late February so I’m guessing they are connected. I’m finding I no longer tolerate the heat like I use to. Growing up in West Texas heat never bothered me. Now I can’t handle it. I’ve been in Illinois for 56 years and had no problem. Now I’m always looking for shade and ways to cool off. And yes, perspiring is worse. I hate it. I love being outdoors and now can hardly tolerate it. Such is life. 🤪
Hi Scrollernut... yes the hot flashes were bad but this sweating is an awful intense hot hot sweat that lasts for a good long few minutes and comes from deep deep inside and nothing alleviates it. 🥵🥵🥵🥵
Yes, it’s definitely different to the menopause flushes. The chills after the sweats are horrid.xx😻😻
Sweats
PV diagnosed in Jan 2023
Still getting PV symptoms...
Laparoscopic Surgery and PV
