I'm ETjak2 and in the menopause suffered from night sweats I use an hrt patch even though I've had bilateral pulmonary embolism. Ask your heam for advice too as night sweats could be linked.It sounds like your getting good advice.
They did the peri menopause blood test? I was already on hrt before the MPN diagnosis.I was lucky I was only off treatment for a month while it was worked out I could take.This was my choice as there is a clotting risk but god it's worth it.
Hello and welcome to the forum. Glad you found your way here.
There is a lot to learn about MPNs when first diagnosed. the good news is that you will have a lot of time to learn it. With proper management, people with ET can expect to live a normal lifespan. There can be challenges to manage beyond thrombosis. The secondary or constitutional symptoms can be more bothersome than the risk of thrombosis. Fortunately, they can be managed too.
All of the symptoms you list can be side effects of hydroxycarbamide (AKA hydroxyurea-HU), including night sweats. Some of the issues like night sweats can also be a symptom of MPNs. We can also experience co-occurring conditions that are not directly related to the MPN. It can be hard to sort out causes. Sometimes, timing of when the symptom began is the best clue. The potential side effects you list are something your hematologist needs to know about sooner rather than later. This is particularly true of the leg pain if it is a new symptom after starting on the HU. If the night sweats are also new, this is something your hematologist needs to know promptly as well. Note that HU can also cause amenorrhea. This would be something to discuss with your care team in the context of potential menopausal issues.
Given that you experienced a stroke at such a young age, cytoreduction would be recommended despite age < 60. You are on the young side to have initiated treatment with HU, but given the occurrence of a stroke, the plan may be to attain a therapeutic target as rapidly as possible. There are long-term risks associated with HU, which is why it is common to use Pegasys in younger patients. Note, however, that PEG takes longer to work than HU. Reviewing all of your short-term and long-term treatment option is something to do with your MPN care team. Hopefully your team includes an MPN Specialist.
It is important to know that all of the treatment options for MPNs come with a risk/benefit profile. We all respond differently to each of the treatment options. Some tolerate HU and clearly benefit from it. The good news is that there are several treatment options available and more in development should you need to make a change.
Here is some information about HU that you may find helpful.
FYI - I was diagnosed with ET over 30 years ago. It progressed to PV about 11 years ago. I have been living a good life and at age 68 plan to continue to do so. I feel better now than I did 10 years ago. This is due to how I am now managing the MPN. Please know that you can do the same.
Wishing you all the best and success moving forward.
I was not given treatment options just started on HU
I’ve spoken to heamo about night sweats as I did not have this issue before I was diagnosed they seem to think menopause
Also the joint pains said it can be side effects but are having physio for that so hope that’s helps
It’s all a hit and miss as no one agrees it’s side effects of meds !!!
I will look into peg but I do think I’m getting used to HU a bit as hair better, skin better but stomach upset once a week but I have learnt what foods I can eat not eat so helps
Yes I’m young to be on HU but it’s working in reducing my platelets back to normal range
hello Sunbathing, welcome to our forum. It is a shock when you are told you have ET, and I am glad that your haematologist advised that you find this forum. I also hope that the information on our website mpnvoice.org.uk is helping you, there is lots on there about ET, the different medications used to treat it and lots of information about ways to manage and live with ET. I hope you are recovering well after your stroke.
I myself have ET, I was diagnosed in 2003, aged 44 and have been on Hydroxycarbamide since 2008. I do sometimes experience sore gums, sensitive teeth and the occasional mouth ulcer, my haematologist prescribed a mouth wash which helps. Tell your consultant that you are experiencing these problems so that they are aware and can advise you.
With regards to the night sweats and menopause, we held an online forum about MPNs, the menopause and HRT which you might find helpful you will find details about it here healthunlocked.com/mpnvoice...
Thank you for link to MPN and menopause I will def have a read of that
I’ve had no mouth ulcers just fuzzy teeth with hot and cold drinks been dentist today going to use a sensitivity toothpaste. But will inform my consultant
I was diagnosed in 12/23 at age 74 with PV. Before that I had joint pain, headaches, night sweats and bruising. The hydroxy (500 mg daily) has exacerbated itching and joint pain. Lots of variety in the side effects from the drugs and the diseases. Check out the lymphoma & leukemia society for online chats as well as contact with a peer who can talk with you about any number of your concerns individually and privately. Hope this helps!
I am so sorry to hear of all your health problems and having to cope with the menopause as well. That’s a lot to deal with and you’re young.
I was diagnosed with Jak2/ ET in January. I had knee surgery privately last September and took a blood clot after surgery. I was really unwell after I left the private clinic and ended up finding out I had a viral infection, dehydration and a blood clot. I had dreadful night sweats for 4 weeks. My bedclothes etc were soaking. I’m 71 so it wasn’t the menopause so please enquire more about those. I have been on Hydroxy 500 mg for about 5 weeks now taking them Monday to Friday and now I’m suffering from stomach bloating and look like I’m 6 months pregnant. It’s putting so much pressure on my rib cage that I can only take shallow breaths and I’m getting exhausted. I’m contacting my doctor to see if I can get anything to help although I’m due back at the haematologist in a few weeks.
I hope you get everything sorted and start to feel better soon. I find this site very good for advice as I’m only new to this condition as well.
I'm recently diagnosed as well...oct 2023. Am 49 and was lucky to not have had a stroke but found out cause I went to ER after fainting and my platelets were 1.5 million. Referred to oncologist and bm confirmed the same. Recently I have started having severe night sweats. I had a hysterectomy in Sept just prior to diagnosis but they left my ovaries. So yay menopause! Hang in there! It was great to have connected with you!
I too had a stroke at 48. Was diagnosed with ET Jak2 positive after that. I could not tolerate HU. Am on Pegasys 45mg once a fortnight. I am now 56 years old now and and it took a while to access HRT as GP would not prescribe it, but I have been on patches for a year now now, after menopause clinic and haematologist both agreed I could have. It has made a big difference.
Thank you. Yes, thankfully I did recover well and am leading a pretty normal life. Tiredness is an issue a lot of times but I’m trying to fight through that as best as I can. I’m on peg as I couldn’t tolerate HU. Hopefully you will get something sorted out soon to help with the menopausal symptoms.
That’s good news you recovered well Im doing ok too thank god still mobile and no signs of long term issues just a bit slower walking and yes very tired exhausted some days
Hopefully I will get help with menopause symptoms then I might sleep better and that will help with fatigue a bit
hello. I’m almost 80, was diagnosed with same 3 years ago. I’d been on HRT patches for years but I was off them when diagnosed with ET. Started hydroxy and got flushed and night sweat again! Spoke to my haematologist and she put me back on low dose of HRT patches. Overnight, the sweats etc stopped! Don’t take no for an answer..Good luck!
Hi. I'm on Hydroxycarbamide also and yes legs ache all the time even in bed. Arms ache also. Mouth ulcers and my teeth are starting to wobble. All since being on Hydroxycarbamide. Good luck and hope you start feeling a bit like yourself again x.
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