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Author Topic: Anybody out there battling to *stay off* HRT (when HRT doesn't work for you ...)  (Read 6734 times)

CLKD

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  • changes can be scary, even when we want them

Maybe your neck would benefit if you see a physiotherapist?  Has the neck been X-rayed recently?   Mine gets stiff and I ought to remember to tip my chin towards my breast bone and rest, then lift and gently turn the head to the left and then central; then to the right  ::).  Occasionally I go 'ouch' when it nips  >:(.  Wear and tear probably  ::)
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Droopeydrawers

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Hi ladies I use the 12 hour window for my eating regime now so that my gut gets the opportunity to fast at night and heal and it's been a real help.if I eat at 8am then I don't eat after 8pm or eat at 9am then don't eat after 9pm you get the idea.tge last smack I have before 8pm is a protein/ carb mix so ie smooth peanut butter/protein on a sour dough cracker/ carb with my choice of hot drink usually either caffeine free coffee with lactose free milk or redbush tea which is not a tea as such it's a herb really.these are great helps for a restful sleep also get some magnesium flakes from health food store or Amazon and soak your feet in a cup of them in a basin of water for 20 mins before bed,your feet will absorb the magnesium you need from the water and get rid of jumpy legs or cramps and do you the world of good.have your tea and cracker while your sitting doing this I do 😊good luck DD😘
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CLKD

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  • changes can be scary, even when we want them

Cramp is caused by a lack of salt in the diet.  4 me bananas eased restless legs as they have potassium.  I suffered for years, remember after a day up and down Hellvelyn crying with the discomfort ....... I hadn't discovered bananas by then. 
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Ladybt28

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Hey Night_owl - that's a bit strange because it is such a new product - only available here in the last 2 years.  I wonder if it is being discontinued because the take up is so low...….but then that is a chicken and egg situation because half the GP's don't know what is available and any good and has been on the market for Donkeys years! how are they going to be prescribing something only available in the last 2 if they haven't bothered to find out about it!!!!  Oh I do despair!!

I really have no idea what is going on - loads and loads of hrt products are being discontinued at the moment which seems ridiculous when the subject is getting a much higher profile and women are getting more educated on the subject.  :-\  you mention future generations getting better treatment what about us!! >:(

My husband gets the smelling smoke thing randomly - so I might suggest its not a meno thing  ;D ;D

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Mary G

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Night_Owl, I'm really sorry that you have had to give up on HRT but completely understand your decision, it clearly isn't working for you.

Having read through your thread, I think you are probably in a similar situation to myself and your migraines are probably caused by generic hormonal instability and progesterone intolerance.  In my case, it is only synthetic progesterone and Utrogestan that cause migraines but unlike yourself, I didn't have any history or PMS and didn't have any problems with my own progesterone pre-menopause.  My theory is that our own hormones act as a kind of protectorate during our reproductive years and once the hormone levels start to decrease and become unstable, migraines start to kick in for some women.  That could explain why you went so many years without a migraine.

Professor Anne MacGregor (migraine specialist) has written a lot about hormones and migraines and it is worth reading her material - you can Google it.  She often recommends Tibolone, have you tried that yet?

Former member Elizabethrose suffered badly with migraines which started at menopause.  She was very knowledgeable and wrote some fantastic posts so it would be worth typing her name into the search bar and reading through her posts.  She is a great loss to the forum. 

It's a pity Dr Nick Panay wasn't receptive to the idea of transdermal oestrogen alongside Bazedoxifene.  It is available as a separate product (at the same dose as Bazedoxifene component in Duavive) and I would have thought he had the ability to closely monitor women using the regime.  I decided to trial it with two pumps of Oestrogel just over a year ago and it started well but I found that it overly opposed the oestrogen component and I started to get menopause symptoms again.  That said, I didn't have any migraines during my trial and although it didn't work for me, there is no reason why it couldn't work for other women.  Again, type Bazedoxifene into the search bar at the top and you will see my posts.   

I had intended to trial Duavive proper but decided against it after my trial didn't work out.

Ladybt28, I agree it is strange that Duavive is not popular in the UK but Ii wonder if GPs have been discouraged from prescribing it.  Is it just being discontinued by the NHS or does it include private prescriptions too?  It is expensive (over €30.00 and the same price as Bazedoxifene) so I wonder if that is the reason?  There is another inexpensive product called Climodien (it has a well tolerated form of progesterone) which is very popular in other countries but it is not available in the UK even though it was licensed for use thoughout EU states by the EMC. 

Is someone trying to reduce the range of HRT products available in the UK?

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Conolly

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ps:  Connolly, do you get the awful neck stiffness, - it's something I get most days and have seen numerous osteopaths, had acupuncture ...

Hello Night_Owl,

Thank you for the explanation on vitamin E plus coconut oil for VA. I'll certainly try it when the time comes and I hope it works for you and you don't need Vagifem. I was wondering... have you used Vagifem every day for 2 weeks before changing to 2-3x a week, as many ladies were advised to do? I'm not sure if this is described in the leaflet and I haven't found any article explaining what exactly happens. Apparently this is necessary to avoid further systemic absorption.

Regarding migraines... yes, neck stiffness and neck pain are very common amongst migraneurs. Have you ever heard of the Migraine World Summit? Have a look on the internet, it's a wonderful opportunity to interact with fellow sufferers and the best medical and science professionals dealing with migraines.

Regarding MLE4901, the last time I've heard about it was on the Mariela Frostrup programme, The Truth About The Menopause and it seems side effects on the liver are quite serious, but they're still going to trial similar drugs according to this article https://www.sciencedaily.com/releases/2018/03/180314092319.htm.

Conolly X
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Conolly

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Is someone trying to reduce the range of HRT products available in the UK?

Hello Mary G,

I think there was a marketing issue and maybe also a cost issue on the NHS. Duavive was developed by Wyeth and marketed in most European countries by Pfizer, after it acquired Wyeth. In the UK and a few other countries, Duavive was marketed by MDS (Merck, Sharpe & Dohme), don't ask me why, and now it is listed on Pfizer UK website.

Conolly X
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Joaniepat

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[/quote]

I was wondering... have you used Vagifem every day for 2 weeks before changing to 2-3x a week, as many ladies were advised to do? I'm not sure if this is described in the leaflet and I haven't found any article explaining what exactly happens. Apparently this is necessary to avoid further systemic absorption.

[/quote]

Hi Connolly,

The instruction to use Vagifem daily for the first 14 days is in the PIL with the product. It is to allow the upper layer of the vaginal epithelium to thicken up (cornification? not sure if that is the appropriate word), which would indeed help to avoid systemic absorption. Sometimes 3 weeks is advised if the atrophy is bad enough to warrant it. The same instructions apply to Ovestin cream as well.

Hope this helps.

JP x
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Conolly

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Hello Joanipat,

Thank you! I was wondering if this has been studied? I couldn't find any reference...

Conolly X
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Night_Owl

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Thanks to All for input.

Connolly, re: Vagifem 2 week re-load - haven't done this for a while and currently trialling not taking any VF - so nearly 4 months off it and so far things don't feel much different in the undercarriage, although I know that can change.  Utrogestan used v-route irritated my vg/bladder, as if it stripped the walls bare(!) and tbh I couldn't be bothered to use VF more than twice weekly and then more before using Utro - such a faff and the potential to trigger migraines.

What I don't get in the VF leaflet is this:

"When using medicines for any menopausal symptoms, it is recommended to use the lowest dose that works, and to use the medicine for as short a time as it is needed"

Surely for most it is lifelong use?


This article is dated 2011 so a bit old now, however:

https://somepomed.org/articulos/contents/mobipreview.htm?7/43/7857'source=HISTORY

"Low dose vaginal estrogen therapy may be used indefinitely, based upon the low risk of adverse effects, although clinical trials to date have not followed women beyond one year [9]."

Yes thanks, Migraine World Summit is a great mine of information, I subscribe to emails and have watched some of the videos. 
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Conolly

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Hello Night_Owl,

Thank you! That's exactly what I feel about all the leaflets and guidelines, they don't speak the same language. Many menopause societies (medical) around the world advocate that leaflets should be changed, but this is being postponed by pharmaceutical companies and governments for years. Of course none of them wants a law suit in case long term use would cause a serious side effect.

Good news you're doing well without Vagifem and Utrogestan. Long may it continue!

Conolly X
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Night_Owl

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MaryG, thanks for your thoughts and suggestions, will check out Professor A MacGregor - and Elizabethrose's posts

I haven't yet tried Tibolone, something to think about - need to find something that doesn't create any fluctuations (my own hormone levels have flatlined) so it could be worth a shot.

At my next clinic appt I will enquire again about Bazedoxifene - see if there has been any change.

It does seem that more options of HRT are needed - Utro/Gel/Test prescribing seems to be on the increase, although great for some, not for others. 


CLKD, one day I'll get around to seeing a physiotherapist (the osteopath is expensive) re: neck, last x-ray showed "general wear and tear", not much of explanation is it.

DroopyDrawers, agree gut health is so important, often I wonder if there's any HRT/Candida link.  Since off HRT my blood glucose levels seem to be swinging around though and I often have to get up to eat in the night, not ideal I know, hope it passes.


Lots to think about and sorry for my garbled replies, my brain is poggled - many thanks to All for taking the time to post - I hope the information is useful to others.

J x



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Conolly

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Hello again Night_Owl,

I have just bumped into this article abstract, thought you might be interested.

https://journals.sagepub.com/doi/abs/10.1177/0333102417690891

Conolly X
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Night_Owl

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Connolly - such a cop-out isn't it   "use for as short a time as it is needed" - if/when I go back to taking VF only, long term, without any prog to oppose it, think I'll still have a yearly endo scan.

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