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[Hurdity]

Hi - just to post about my (lack of) experience with Nalvee. Rather than put in a separate GP consultation I added a note to my online prescription request - saying I wanted to switch to Nalvee as it had been licensed by NICE. At the same time I also requested Utrogestan for my next cycle which was due to commence. I heard absolutely nothing but I queried it at the GP pharmacy yesterday and she asked if the pharmacist had phoned me - answer negative so she agreed to put the query again to  either the pharmacist or GP.

The reason she gave for its refusal was that it wasn't on the formulary for my area. I knew this because I had looked it up. This refusal is not even because it is not approved for first line of treatment (but could be prescribed exceptionally), but hasn't even been discussed!!! It is clear that some formularies in some parts of the country are more up to date than others.

Anyway I do intend to pursue it because it is important that this is available for women to try otherwise it will go the way of Duphaston and discontinued before it's even got going due to lack of use!

Hurdity x

[lizzy76]

Hi Hurdity,

I managed to get Nalvee prescribed by the GP surprisingly easily. It took a while for the pharmacist to get it in though.
It's listed as non-formulary in my area- not sure how that works.

[CLKD]

Would that be down to costs?   I get cheaper anti-depressants often, 1 made me really ill so that is a no-no on my repeat.

[Mary G]

It's not expensive and I walked into a pharmacy in Portugal I was able buy it over the counter without any problems at all.  It's called Duphaston in the EU and cost €9.85 for a box of 42 tablets so not expensive.  It's readily available in Ireland too.

It sounds like the NHS are making a meal of it.

[Flamingo]

I got it through a private GP and their linked online pharmacy.  I've been told by my GP that it's not available in Hampshire - what a joke!

I tried it but made me feel terrible Also you can't take it continuously. 

It sounds like a holiday to Portugal a cheaper option! X

[Mary G]

Flamingo, I thought dydrogesterone could be used continuously because it's the progesterone component in Femoston which has a conti version.

In the end I decided against trying it because Femoston worsened my migraine auras and dydrogesterone doesn't adequately suppress FSH and LH thus creating a stable hormone environment.

For those who feel getting it from the NHS is like getting blood out of a stone but still want to try it, it's definitely worth a trip to Portugal.  Most places don't demand a prescription for progesterone.

Out of interest, what side effects did you have?

[Hurdity]

Thanks for all the replies.

I don't think it's anything to do with cost - just that my Trust formulary hasn't discussed it yet - but I'm not going to let it go. I'll wait a week or so and see if I hear and then do an online GP consultation so someone will have to contact me.....

Yes you can take it continuously - here's what the product info says:

Hormone replacement therapy: i.e. as supplement in estrogen treatment in non-hysterectomised women with symptoms due to natural onset of or surgically induced menopause:

- Continuous sequential therapy: continuous use of an estrogen; sequential supplementation of 10 mg dydrogesterone during the last 14 days of each 28-day cycle

- Cyclical treatment: cyclic use of an estrogen with a treatment-free period, usually 21 days on and 7 days off treatment. For the last 12‑14 days of estrogen use, 10 mg of dydrogesterone is supplemented.

- Depending on the clinical response, the dosage may be adjusted to 20 mg dydrogesterone daily in the course of the treatment.

The last indication is for daily use albeit at a much higher dose (which one wouldn't want to do to start with). That last point indicates room for flexibility so any doc who doesn't understand this or doesn't know as Mary G says that the same progestogen is used in Femoston - should not be treating women in menopause!!!

No-one should have to get it privately if it's available on NHS - but I remember I was the first in my practice to be prescribed Utrogestan for HRT all those years ago ( 2010 or 2011 I think?) - some GP practices are just behind....

Hi Hurdity,

I managed to get Nalvee prescribed by the GP surprisingly easily. It took a while for the pharmacist to get it in though.
It's listed as non-formulary in my area- not sure how that works.

This is interesting - but there are many products which have been discussed and then not listed as the primary first line treatment but can be prescribed exceptionally - several trust formularies I've looked at have traffic lights indictaing their status. It has always been possible in my practice to be prescribed something not listed as first line - but it has to have been discussed by the formulary and some sort of traffic light status issued. This hasn;t been done in my formulary at all yet....

I would be interested to know re your formulary. Would you mind telling me (by pm if you don't want to reveal) which area or Trust you are in so I can look it up? Thanks!

 Hurdity x

[bombsh3ll]

I would definitely pursue this - go above your GPs head and write to the health board, MP, minister for women's health etc. The more people make a fuss the more likely treatments are to become available.

If we quietly put up with poor care, postcode lotteries and limited choice, this is what we continue to get.

I am super interested in dydrogesterone for myself when my time comes to graduate from COCP to MHT.

[lizzy76]

It is interesting, as my GP wont prescribe cyclogest even though that is green on the formulary but will prescribe nalvee which is non formulary and grey. I will send you a PM Hurdity.

A couple of other things, the insert with the Nalvee does actually say it should be taken sequentially but I am taken it continuously as directed by GP.

And, MaryG femoston also gave me migraine but so far this has not happened with Nalvee so I presume, for me, it was caused by the oral oestrogen.

So far it is suiting me quite well but it's only been a couple of months.

[Hurdity]

I would definitely pursue this - go above your GPs head and write to the health board, MP, minister for women's health etc. The more people make a fuss the more likely treatments are to become available.

If we quietly put up with poor care, postcode lotteries and limited choice, this is what we continue to get.

I am super interested in dydrogesterone for myself when my time comes to graduate from COCP to MHT.

Hi Bombshell

As you may have gathered I am not the sort of person who quietly puts up with poor care!

And as mentioned I have yet to consult the doc but postcode lotteries - make me fume! I mean another formulary in the SW where I live has Nalvee listed along with the other progestogens and given the green light! How ridiculous is that whereas mine doesn;t seem even to have heard of it!!!

I will update progress in due course.

Hurdity x

[Hurdity]

It is interesting, as my GP wont prescribe cyclogest even though that is green on the formulary but will prescribe nalvee which is non formulary and grey. I will send you a PM Hurdity.

A couple of other things, the insert with the Nalvee does actually say it should be taken sequentially but I am taken it continuously as directed by GP.

And, MaryG femoston also gave me migraine but so far this has not happened with Nalvee so I presume, for me, it was caused by the oral oestrogen.

So far it is suiting me quite well but it's only been a couple of months.

Thanks for pm

I think the reason for the discrepancy between Cyclogest and Nalvee is that Cyclogest is green for the purpose for which it is licensed ie fertility and I think pms, but it is not licensed for progestogenic opposition to oestrogen regarding endometrial protection, ie as part of HRT. Crazy yes but that's probably why.

Whereas even though Nalvee is listed as non-formulary is IS licensed as a progestogen for HRT - and yours is a good exmple demonstrating that docs don't have to conform with formulary recommendations - but frustrating if this is down to individual docs requiring we women to be even more assertive - no bad thing - but not every woman feels able to challenge medical authority in this way.

I haven't been on the forum that much recently but would love to read how it's working for you - if you haven't done so already.

Hurdity x

[Vicky81]

Hi - just to post about my (lack of) experience with Nalvee. Rather than put in a separate GP consultation I added a note to my online prescription request - saying I wanted to switch to Nalvee as it had been licensed by NICE. At the same time I also requested Utrogestan for my next cycle which was due to commence. I heard absolutely nothing but I queried it at the GP pharmacy yesterday and she asked if the pharmacist had phoned me - answer negative so she agreed to put the query again to  either the pharmacist or GP.

The reason she gave for its refusal was that it wasn't on the formulary for my area. I knew this because I had looked it up. This refusal is not even because it is not approved for first line of treatment (but could be prescribed exceptionally), but hasn't even been discussed!!! It is clear that some formularies in some parts of the country are more up to date than others.

Anyway I do intend to pursue it because it is important that this is available for women to try otherwise it will go the way of Duphaston and discontinued before it's even got going due to lack of use
Hi hutdity ive sent you a private msg if thsts okay? Just some valuable advice needed please about utrogesten xxx

Hurdity x

[CLKD]

Vicky81 - U can read the topics already posted on the Forum ......... that is why we are here, to share experiences etc..  The search facility is very useful, which will show all the threads about most of the options as well as browsing the pink area above, clicking on each for information.