I have ET, my platelets have been very high at over 1500 and I have taken up to 270mcg Pegasys weekly at one point and must say that was not the best. However I’m now stable on 90 weekly with platelets at 350-390. So I’m happy with that.
I’m 54 and suffering with symptoms of menopause , particularly night sweats causing sleeplessness and have decided to give HRt patches a try. Apparently these do not carry the same clotting risk as the tablets.
Does anyone have any comments. / experience !
Hi Suebo, I would be interested on peoples thoughts on this too, as like you I’m on Pegasys weekly only 45mcg and working well, but like you get night sweats symptoms my GP suggested HRT but as she hadn’t got a clue about my ET & PV I was reluctant to have them, I assumed it was more to do with the condition or even side effects of the Peg? Hope you get some answers best wishes.
Hi Suebon,I have ET and I take Pegasys and have had this for many years, I went through early menopause it started at the age of 38 and by the time I was 39 my periods slowed to nothing. My GP suggested I go onto HRT for a period of time to help with my bones and to replace my body with what it should be making but is not. I have been on HRT patches for about 6 ish years now. I have not had any issues with them, apart from some supply issues initially so I am not on ones that you change 2 times weekly they need to be placed below the tummy somewhere so I stick them to by behind 🤣 seems to work well. It is a personal decision to go into hrt for a short period of time but will be aiming to stay on it another 2-3 years to hopefully get the benefits from it.
Hope this helps but like I said is a personal choice but for me taking HRT whilst on Pegasus has been fine
Sadly the sweats, flushes etc are also et symptoms. I am 60 and have just got a sympathetic to gp to give the patches. They are helping with the night sweats though it's only been 3 weeks. Hopefully if you decide to use them you will get the benefits. I take peg weekly was asked to take 90 but decided t do a half way dose of 67.
Hi. I also have E T but I’m on hydroxycarbamide. I took HRT for many years and stopped a year ago. I was doing ok till diagnosed with E T and started treatment. Then the sweats started big time. Night and day. Had a chat with my haematologist and he agreed to put me back on HRT, low dose patch. Almost the next day, the hot flushes stopped. I still get warm ish..but nothing like before. But now I’m battling peripheral neuropathy on my foot! Never ending.. Good luck. Best wishes
Good luck with the patches
How are you all getting in with Peg and HRT? I take 90mcg fortnightly. My menopause has not been too bad but I'm now 55 and libido has dropped off a cliff. For this reason alone.I am now considering hrt or testosterone so interested to know if either put you more at risk of clots if your PV is well controlled.
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