HRT and MPNs

[Jenny_F]

I am just watching the Davina programme about menopause and was wondering what the risks are of HRT for someone like me with ET. I am 50 this year and possibly peri-menopausal - is it safe/advised?

[Kari1961]

Hi Jenny - I think it's down to individual factors, so not a blanket yes or no. You'll need to speak to your GP about it and be individually accessed.

Here's the link for MPN Voice: mpnvoice.org.uk/living-with...

I couldn't take HRT as I had previously suffered a Stroke and have Jak2+PV. I had to go through it naturally: mindfulness, meditation, a desk fan and a cooling pillow helped - I can't sleep with an ordinary pillow now.

[Minu6]

Ooo, going to keep an eye on your query, having blood tests today to check hormones, night sweats have gone crazy and not managing much sleep, waking up drenched.....Feeling doubtful my gp will have any knowledge on this as they struggle to grasp that my ET is a blood cancer....

[Grumpyfairy in reply to Minu6]

Exactly the same!

[Mandy-moo74]

Hi Jenny _FI have ET had for many years and I went through the early menopause around 39-40. I decided to take HRT patches because of being so young when this happened. I personally have had no issues with doing this and hopefully only the benefits

[Grumpyfairy]

Hi Jenny, I’ve just come on to ask the same thing after watching last night. I’m 55, ET Jak2 Positive. Have had it for 4 years now, take aspirin and hydroxy, have always put my symptoms down to the ET and maybe a bit menopausal , but now I’m wondering if I’d benefit from HRT. Some symptoms are so similar aren’t they? So interested to see everyone’s thoughts x

[Lena70 in reply to Grumpyfairy]

I posted an article below where the doctor talks about the similarity of symptoms shared by MPNs and menopause. I was sure my night sweats that started four years ago were normal as I was in my late 40s and in peri-menopause. That in part led me to not seek out medical advice for them. I, rather stupidly, didn't even mention them to my GP thinking they were just normal and I had to deal with them.

[queeniethequeen]

Same question! I have ET which was discovered during blood tests checking for menopause. I have been very anti HRT but right now I would do just about anything to feel like my old self.

[Minu6 in reply to queeniethequeen]

Same here!!! Can distinguish between the ET and menopause heat/sweats, but think both gone haywire recently. For me, ET ones are whole body overheating and sweating that is drenching, whereas the menopause ones are upper body/face, and not as sweaty. Told my gp not long ago that the menopause hot flushes were a breeze compared to the ET ones....Haven’t watched the program, had the ET sweats for 11 years, never any suggestions of possible treatment to help me, just the wear natural fibres, etc, none of which made any difference. Cut out my beloved coffee a few years ago for months with no effect, so went back to enjoying my cuppa x

[queeniethequeen in reply to queeniethequeen]

I spoke to the haematologist about this and she said no to HRT. I'm so disappointed. Not sure how to proceed.

[Jenny_F]

I think we should all start a support group! I am wary of going to the GP as I don’t think they will have the right level of knowledge, given most of them don’t receive menopause training. I hope that this is something the experts at our respective clinics have looked into. I am not menopausal yet but nearing that age and want it to not interrupt my work and personal life.

[Lena70 in reply to Jenny_F]

I would love a support group.

[queeniethequeen]

Great idea! I'm so up for that.

[Minu6 in reply to queeniethequeen]

Me too!!! Feeling so excited that I’m not alone in this 😁and definitely feeling better too xx

[Jenny_F]

If anyone is interested the Dr on the show offers a free app menopausedoctor.co.uk/resou...

[Lena70]

I was so excited to see this post today. I've been hesitant to inquire about the effect menopause has had on MPNs for those like me diagnosed before it hit.

I'm fairly certain my "masked PV" will be unmasked after menopause. My platelets and WBC are high, but my other counts hover right at the top of normal. I saw my gynecologist yesterday about managing heavy periods. We are going to try Provera as she thinks any solution with estrogen is not recommended for me.

Here's an article that mentions how being pre-menopausal can mask PV for those of you who are interested.

patientpower.info/what-wome...

[Jenny_F in reply to Lena70]

Thanks for sharing! From what they said on the Davina programme the risk of clotting is so small from HRT and the research on risks has been either inaccurate or non-existent, which is typical for any female centric illness. I wonder if the people that had the clots either had an undiagnosed MPN or other factors and were not on treatment like us. Saying that I used to get stroke-like focal migraines when on the pill so I suspect that my undiagnosed, untreated ET may have caused them.