Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: pepperminty on April 29, 2019, 06:35:05 AM

Title: We need more options- feeling like a rant
Post by: pepperminty on April 29, 2019, 06:35:05 AM
 Hi Ladies,

Feeling like a rant-


Menopause / perimenopause  is an issue that will be increasing as we live longer.
 It seems to be soooo short sighted not to tackle the lack of options with HRT before it becomes a crisis- women having to stop work due to symptoms before the increased pension age - that is happening now and will only get worse- if the issue is not addressed soon. This means that the work force will become less diverse as some women may have to retire earlier. You are lucky if you can get reasonable adjsutments at work and have a sympathetic employer.
For starters -We can have issues with progesterones- so why not increase the options, they already make Dydrogesterone, so why not make it seperately in the UK?

 Small changes like more options and better GP education would make  a monumental difference. The HRT options are being reduced in the UK, they should be increased. Surely there is a market for the pharma companies?
Joined up services are being reduced also - menopause clinics, with GUM clinics and vulval clinics etc. They should all be available together in a one stop shop.

Not addressing it now will have a knock on effect and cost the goverment more in the long run.


Peppermintyx
Title: Re: We need more options- feeling like a rant
Post by: Rosie63 on April 29, 2019, 08:15:00 AM
I totally agree with what you say here Pepperminty.  I'm one of those ladies who are suffering because the HRT I did well on for many years has been discontinued and I'm now unable to find another regime that suits me.  In a way I'm ‘lucky' because I'm in my 60's and not working BUT all the things I was looking forward to doing in retirement that I never had the time to do when I was working have been blown out of the water because I just haven't got the energy or the enthusiasm to do because I feel so ill all the time.

In my opinion the whole process is broken from not easily and quickly being able to gain access to the help we need, unless one is willing and able to pay, to not having more HRT options available to us !!

Wishing you well.

Rosie63 x
Title: Re: We need more options- feeling like a rant
Post by: roseandthorn on April 29, 2019, 08:52:38 AM
I hear ya, Sister. I am also caught by my excellent patches being withdrawn and plan B has failed. I was chatting to two friends and colleagues last week, both of whom have research doctorates in a related area. And apparently sexism and even misogyny in the pharmacology/pharmaceutical industry is rife. The majority of drugs generally are tested on men because of the risks around using women, especially of childbearing age in the testing of new drugs. Female physiology is far less likely to be taken into account in the decision to make drugs available or not.

I remember a GP once telling me that the market for HRT was shrinking. How so?...there's a significant and growing number of us. 
Title: Re: We need more options- feeling like a rant
Post by: Dancinggirl on April 29, 2019, 09:09:36 AM
pepperminty - you are totally on the same page as many of us on this forum. The cost of menopausal problems to society must be enormous.  The NHS could save millions with proper treatment in place and, yes, pharmaceuticals are really missing a trick - wouldn't it be great to have not just more HRT options but also some good alternatives to HRT?? 
Until somebody does a proper study on the impact of the menopause on society and the workplace I doubt anything will be done. There is still so much ignorance and indeed prejudice mixed in with all aspects of the menopause - there is still an attitude from most male doctors and sometimes women too, that we should just pull ourselves together and get on with it; doctors are far more willing to dish out ADs than actually deal with the underlying causes - and not just for the menopause either - I had to pay to get my back problems diagnosed.  We are fast becoming a nation spaced out on ADs and painkillers and the side effects of these can be pretty bad e.g. weight gain, digestive problems, withdrawal problems etc. WE rarely get to see the same GP each time so there is little or no consistancy.

When I lived in Austria and Germany, if you had a gynaecological problem you went straight to a gynaecologist - time wasn't wasted by going to a GP who tried you on 'this and that' before referring you.

I often find myself uttering Terry Wogan's phrase “is it me or has the world gone mad?”.

Oh! - isn't it good to have a Monday morning rant?????

DG xxxxx
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on April 29, 2019, 09:41:43 AM
Hear hear, agree with everything that's been said. Currently on day 7 of Utrogestan and keep having a little weep, and wondering how much longer I can go on with this.

Can't we form a group and lobby someone/somewhere? Or how about contacting the makers of dydrogesterone and seeing what their response is as a starting point? What do others think?x
Title: Re: We need more options- feeling like a rant
Post by: CLKD on April 29, 2019, 11:54:34 AM
Despite this Forum and despite the fact that we are often told that various 'experts' in menopause are educating GPs the message simply ain't getting through!! 

Contact the manufacturers?  It won't hurt to send a short e-mail.

I haven't the energy to do any lobbying  :-\. 

The other option is to write a book together similar to the one about me and my menopausal vagina.  3/4 sufferers putting their experiences together under specific headings: symptoms and age: GP experiences - good or bad: how many HRT is tried B4 finding something that works/doesn't .........
Title: Re: We need more options- feeling like a rant
Post by: Blue Kingfisher on April 29, 2019, 02:50:03 PM
Couldn't agree more Pepperminty! Not only is this a disaster in terms of our future economy both in terms of the strain on the NHS & work diversity it importantly affects quality of life. Quality of life is something everyone should have fair access to improve & I would also argue that it's simply not fair that retired women (whether early or not) should suffer a lower quality of life basically because they have female hormones! Where is the planning for that in an ageing society?! This isn't a new issue!!

I agree with you that the way forward is more transparency, more options, more awareness, more accommodation & understanding of menopause impact.

I personally made it into work this morning but had to leave around 2:30pm due to foggy brain & exhaustion. My new employer (how ideal is that, NOT!) is very understanding so far but time will tell if I can find a better HRT régieme before their patience runs out.

xx
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on April 29, 2019, 04:10:04 PM
OK Ladies,

thanks for the responses. All great and all very eloquently telling it how it is.

How about we keep this thread to express our opinions on this? And perhaps we can send it to the makers of Dydrogesterone for a start! And I know Diane Danzebrink, - Make menopause matter petition ,  may be interested- she has met with an MP regarding the sorry state of things. You would have thought Teresa May being a woman would champion a change -.

Pounds and pence are unfortunately where it matters .

If we all had the email address of the company who stopped the HRT patch recently
And The one that makes Femosten etc
And any other ones relevant and sent them off an email

~They may take notice. ~

You can ignore the odd one, and write a generic reply!
But can you ignore a thousand emails? !

So If every lady on here emailed we might get some where?

Or am I being too revolutionary here?

I haven't got the energy to lobby either , but I sure have the energy to send an email of letter.

Is anyone on here good at writing emails that are to the point and what would we like to include in them?

Even if nothing comes of this we can all express our opinions.

Peppermintyx

PS this was written very quickly - so excuse typo's etc

Title: Re: We need more options- feeling like a rant
Post by: sheila99 on April 29, 2019, 04:22:47 PM
Absolutely agree. Educating GPs would be high on my list and that doesn't have to cost a lot. I can only assume TM is one of the lucky ones who sailed through it, she wouldn't be able to do the job if she felt like I did (undiagnosed peri for 2 years by 2 different GPs). Bit of a catch 22 - those who feel OK don't care, those who don't rarely have the energy to fight. But we're preaching to the converted here, the message needs to get out to the wider public.
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on April 29, 2019, 05:24:16 PM
Definitely think we should all email the makers of dydrogesterone, as you say Pepperminty that's very doable. Does anyone know their email address?  In the meantime  I'm going off to do a bit of research and try to find it myself. I'm happy to write the email too (but not for a couple of days as currently feeling off it). Will report back x

PS poor TM don't know how she's doing that job if she's not on hrt!
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on April 29, 2019, 06:39:50 PM
Fab,Perinowpost, I will keep an eye out . We should send one to Teresa May- friend of mine is a staunch conservative - perhaps he could get it to her? She looks like she may be on the wrong dose/ type.

PMX
Title: Re: We need more options- feeling like a rant
Post by: Orangefoot on April 29, 2019, 07:45:10 PM
I too wonder why Utrogestan is the only option when so many wines - including me - can't bear life taking it.

I lasted only one cycle before vowing never to take it again and being asked by my family not to as they couldn't believe what it did to me.

There has to be more research. Utrogestan is not designed for menopause and until more research is done a more tolerable drug won't be found.

Is any university doing menopause research? I've completed a few questionnaires but they have all been about quality of life, not medication.
Title: Re: We need more options- feeling like a rant
Post by: kdee69 on April 29, 2019, 09:04:10 PM
Definitely think we should all email the makers of dydrogesterone, as you say Pepperminty that's very doable. Does anyone know their email address?  In the meantime  I'm going off to do a bit of research and try to find it myself. I'm happy to write the email too (but not for a couple of days as currently feeling off it). Will report back x

PS poor TM don't know how she's doing that job if she's not on hrt!


Took me a while as the company that originally manufactured it got taken over twice. This is the only way of contacting them unless you want to call. Plus, think this goes to their US office but the drug looks like it's manufactured out of India. Still it's a start.  :)
https://www.abbott.com/contactus.html

 
Title: Re: We need more options- feeling like a rant
Post by: Dancinggirl on April 29, 2019, 09:10:38 PM
Dydrogesterone used to be available on it's own here in the UK - I had it alongside Oestrogel for a few years back in the 1990s.   I know it is available elsewhere in the world. I think NICE must have taken it off their list for some reason!!???

Considering it is part of a combined HRT pill (Femoston) and this is well tolerated by many women, it does seem strange that it can't be made available to have alongside transdermal oestrogen.

Title: Re: We need more options- feeling like a rant
Post by: pepperminty on April 30, 2019, 06:09:24 AM
Thanks kdee69

Found the link to UK telephone numbers for Abbotts with your post it is :  https://www.abbott.co.uk/contact.html                                                                          I will call them today and ask for an email address .



Dydrogesterone used to be available on it’s own here in the UK - I had it alongside Oestrogel for a few years back in the 1990s.   I know it is available elsewhere in the world. I think NICE must have taken it off their list for some reason!!???

Considering it is part of a combined HRT pill (Femoston) and this is well tolerated by many women, it does seem strange that it can’t be made available to have alongside transdermal oestrogen.




Yes Dancing girl, so maybe we can start something of here - the campaign to bring it back as a seperate option? I know it doesn't suit everyone but at least it is a start . If  I manage to get a contact email ! Then there is also contacting NICE -found a link and will try to get an email. Sometimes one has to have a little faith that if you get the right person at the right time someone may listen and do something. But if you don't try nothing will happen.

https://www.nice.org.uk/guidance/cg177/documents/osteoarthritis-update-stakeholder-lists-and-how-to-register2


We are information gathering at the moment, and can get all our ducks in order - so any other suggestions etc are most welcome.


PMX
Title: Re: We need more options- feeling like a rant
Post by: Jenna on April 30, 2019, 07:17:47 AM
To contact NICE:

https://www.nice.org.uk/get-involved/contact-us
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on April 30, 2019, 07:34:53 AM
Ok Ladies  - just found out that MYLAN BGP makes  Femosten /Dydrogesterone, sold under the brand name Duphaston among others.  I called the reception and she gave me the email address :[email protected] and said to email her and she will pass it on.

So do we need a clear, positive, point by point email asking how we go about getting dydrogesterone in to the uk? And whhether they would be willing to do so? I suspect that they will throw it back to NICE? But persistence is the key here maybe?

NICE are here to help us, the drug is already used so what is the issue? With HRT etc in the press at the moment the time may be right? Such a small thing could have the potential to help so many women. If we are a small percentage on here then multiply that with all the other women in th UK who give up silently .


So if there are any suggestions to be included we can formulate a generic email , which relates to economic issues as well as the above .

PMX
Title: Re: We need more options- feeling like a rant
Post by: Maryjane on April 30, 2019, 07:51:46 AM
I was at a Menopause talk on Saturday & there are new HRTs being produced hopefully for 3/5 years time.

Not for us maybe, but generations behind us.
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on April 30, 2019, 08:23:54 AM
That's great MaryJane- Hopefully for us as it is never too late to start! If everyone takes a brick form the wall eventually it may fall down. One's own small brick or chip may not seem like much , but it all makes a difference.  I always feel better when I am doing something positive, even though, soemtimes it is a monumental struggle.

PMX
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on April 30, 2019, 09:20:08 AM
That's amazing what we can do when we put our heads together 😀 . Good news Maryjane let's hope they include a kinder progesterone x
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on April 30, 2019, 09:54:25 AM
Hear hear, agree with everything that's been said. Currently on day 7 of Utrogestan and keep having a little weep, and wondering how much longer I can go on with this.

Can't we form a group and lobby someone/somewhere? Or how about contacting the makers of dydrogesterone and seeing what their response is as a starting point? What do others think?x

Hi Perinopost, as per your posts here, when you are feeling better, let me know your thoughts on what should be included? I also think that we should come from a thank you for what we have already, and how do we go about getting what we want standpoint? And also perhaps what is the likely hood that we will get it ? - If nothing else it opens a thought or perhaps a discussion.

PMX
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on April 30, 2019, 10:20:43 AM
Definitely, I'm just going through the prog withdrawal phase (foggy thinking) so wouldn't write my best email right now. But should feel better in a couple of days. Will draft it up for re-edit x
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on April 30, 2019, 01:31:18 PM
Definitely, I'm just going through the prog withdrawal phase (foggy thinking) so wouldn't write my best email right now. But should feel better in a couple of days. Will draft it up for re-edit x


Great , awful that we have to go through all this crap, I get that too! I do hope you feel fabulous very soon!

PMX
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on May 28, 2019, 02:52:58 PM
Hi all

As promised I wrote to Mylan (the makers of Dydrogesterone) and NICE re the subject of dydrogersterone being removed especially with it being a kinder progersterone.  I have yet to hear from NICE (apart from an acknowlegement that they will be in touch within the next 18 days), but thought you would like to read Mylan's response which I received today below:

'I refer to your recent correspondence in which you requested information on the withdrawal
of Dydrogesterone by NICE
NICE is an independent body that governs certain aspects of healthcare in the UK. As such
we would not be able to comment on the reasoning behind their withdrawal of
Dydrogesterone as a treatment option for HRT. For this information we would suggest
contacting NICE themselves.[/b]
If patients require any further information regarding suitable treatment options, we would
advise them to contact their doctor or pharmacist as they are best placed to provide them
with this information.
The personal data you give us will be used to answer your query and the information needed
to answer your query will be recorded. Your query and the personal information relevant to it
will be retained for a defined period to enable Mylan to meet its Data Processing policy
obligations. Further information is available in the Medical Information Fair Processing
Notice available by contacting us by e-mail at [email protected]
I hope you find this information helpful. Please do not hesitate to contact me'.

Disappointing I know but worth a try.  Once I've heard from NICE I will share it with the forum x
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on May 28, 2019, 06:31:06 PM
Thanks Perinowin,   hopefully NICE will come up with a viable reason. Cost I suspect.

PMX
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on June 05, 2019, 11:20:05 AM
Hi all

We've now had a reply from NICE, please see below:

'Thank you for contacting the National Institute for Health and Care Excellence (NICE). I understand that this is an important issue for you and hope that you find the following information helpful.
 
NICE is an independent organisation responsible for providing national guidance in the areas of healthcare, public health, and social care in England for the purpose of promoting good health and preventing and treating ill health. While we have published a clinical guideline on menopause: diagnosis and management (NG23), which makes recommendations relating to hormone replacement therapy, we have not made recommendations on the prescribing of dydrogesterone.
 
In your email you said that dydrogesterone ‘has been withdrawn by NICE as a separate option when used with hrt'. I can confirm that we have not published technology appraisals guidance on dydrogesterone or progesterone and therefore it is up to the relevant commissioner, in this case individual clinical commissioning groups (CCGs), to make decisions about the funding of this treatment on the NHS.
 
When we recommend a treatment 'as an option' in our technology appraisals guidance, the NHS must make sure it is available within 3 months (unless otherwise specified) of its date of publication. This means that, if a patient has a disease or condition and the doctor responsible for their care thinks that the technology is the right treatment, it should be available for use, in line with NICE's recommendations. However, as explained above we have not published technology appraisals guidance on dydrogesterone or progesterone.
 
Clinical commissioning groups (CCGs) are responsible for the commissioning and procurement of most treatments and services in the local areas for which they are responsible so you may wish to contact them to see if they have a local policy in place on prescribing dydrogesterone. You can search for your local CCG, and find their contact details, on the NHS website.
 
I hope that you find this information helpful. Please tell us how we did by completing our short survey. It will only take you a couple of minutes.'


What does everybody think?  It will be interesting to get feedback as to where we go from here x
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on June 05, 2019, 03:35:50 PM
Thank you soo much for doing this Perinwpost. It looks like the CCG is where to go. But what does NICE need to do a recomendation for a drug then such as Dygesterone?

PMX
Title: Re: We need more options- feeling like a rant
Post by: CLKD on June 05, 2019, 04:05:07 PM
Passing the buck?

Well done on persevering!
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on June 05, 2019, 04:09:05 PM
Hi Pepperminty

Yes it looks like contacting the  CCG is the next step.  Unfortunately, when I looked at my local one (as per the link) it said ‘requires improvement'!

I'm not sure about NICE. Hopefully we'll get some more suggestions. Especially given that progesterone intolerance is one of the most common problems on the forum x
Title: Re: We need more options- feeling like a rant
Post by: CLKD on June 05, 2019, 04:16:17 PM
Does that mean that they haven't sanctioned 'progesterone' .......
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on June 05, 2019, 04:47:24 PM
I'm floundering a bit with that one CLKD, they haven't published guidance on it but I'm not sure exactly what that means. We could do with someone to translate x
Title: Re: We need more options- feeling like a rant
Post by: sheila99 on June 05, 2019, 05:04:51 PM
Sounds like a fob-off to me.
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on June 06, 2019, 06:00:41 AM
Yes a fob off and passing the buck, I will do a bit of digging and try to come up with something, a reply to NICE maybe the first step? I think thy recommend to the CCG?

PMX
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on June 06, 2019, 06:45:17 AM
Yes will definitely do both x
Title: Re: We need more options- feeling like a rant
Post by: Nannyneet on June 06, 2019, 10:38:51 AM
Just being totally cynical here but the main problem is this is a women's problem,if it was a mans problem it would have been sorted long ago
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on June 06, 2019, 11:39:50 AM
You could be right Nannyneet but we can't let that stop us x
Title: Re: We need more options- feeling like a rant
Post by: Nannyneet on June 06, 2019, 08:41:33 PM
You could be right Nannyneet but we can't let that stop us x


Oh no,I didn't mean it was a lost cause,it's worth pursuing
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on June 07, 2019, 05:46:14 AM
Not a lost cause agreed, but we need to find out how people have sucessfully got drugs re approved etc, there must be a process?

PMX
Title: Re: We need more options- feeling like a rant
Post by: Hurdity on June 07, 2019, 07:19:40 PM
I've only just seen this thread in particular the discussion about dydrogesterone.

It's brilliant that you're looking into this and writing to the relevant bodies! Many of us would love to try this progestogen even though it is an oral HRT....

Forgive me if I'm a bit confused but I'm not quite sure in what capacity NICE are involved? As has already been mentioned on the thread, the drug itself, dydrogesterone, is already licensed - but at the moment only as part of Femoston combined HRT types. As far as I understand it therefore NICE would not be involved - are they even involved in specific HRT types at all? Sorry I don't know how all this works. I know drugs have to get a license through the European Medicines Agency and similar bodies and then can be released in UK but not sure where NICE comes into this re new products?

As far as withdrawal of existing products is concerned, I understood that this was a commercial decision by the company but I might be wrong here. I can see you wrote to the company who suggested writing to NICE but I'm not sure why they suggested this? Someone in the company (which has several subsidiaries it seems) should know the history behind why Duphaston was withdrawn as a separate progestogen in UK but I expect it was for commerical reasons eg when Orthgynest (vaginal) pessaries were withdrawn this was for the same reasons - nothing to do with NICE.

Also not sure why NICE mention the local CCG - because  I am sure they will only decide what their priorities are  locally on the basis of licensed available medicines nationally?

What we need to find out is, who is the body nationally in UK which decided that Duphaston should be available in UK as separate treatment (licensed)  when it is still being manufactured by the company. I haven't looked into which other countries it is available in but maybe someone else has?

Great work girls anyway and let's continue to try to make changes through badgering everyone concenred :)

Hurdity x
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on June 07, 2019, 07:45:41 PM
Hi Hurdity

Didn't realise you had commented on this and answered you on another post.

Anyway you've pointed us in the right direction I think to getting to the bottom of this re your advice about Duphaston. I'll do some research into this as soon as I get some time and pursue it.

Thanks x
Title: Re: We need more options- feeling like a rant
Post by: Hurdity on June 08, 2019, 07:58:25 AM
Hi there - well really I'm also in the dark about how the system works!

Anyway I found this as I remembered there was an entry in Netdoctor about it, and that must be where I remembered the comment about it being withdrawn ( although I don't remember reading that!): https://www.netdoctor.co.uk/medicines/a6626/duphaston-discontinued-in-the-uk-march-2008/

"Warning!
    March 2008: The manufacturer is withdrawing this medicine from the market for commercial reasons. If you regularly take this medicine you should make an appointment with your doctor to discuss alternative treatments."


Also looks like it's still available in Ireland:
https://www.medicines.ie/medicines/duphaston-10mg-film-coated-tablets-31942/

I would suggest that there may be a better commercial case for it now that body-identical oestrogen is now widely used, especially as a separate oestrogen, compared with 2007-2008 and options for progestogen are very limited. However I might be getting a distorted picture from this forum though - although meno specialists I'm sure would prescribe it....anyway the point is it is still being manufactured so as I said above aside from the company making a decision to release it in UK again, I presume there is another authorisation that is needed? Product licence or something? That's what we don't know?

Maybe we should all write to the manufacturer as members did with Femseven - I'm happy to as well, especially if you don't have the time, but don't want to take over your research in any way Perinowpost!

Hurdity x


Title: Re: We need more options- feeling like a rant
Post by: pepperminty on June 08, 2019, 07:59:50 AM
Thanks Hurdity for your input,
I was having a conflab with my DH and he said the same, and also that it sounds like we are getting the run around.

Perinowpost has been fab in writing off. I will do a bit of research and try to find out which body to write to next. If you don't ask you don't get!


PMX
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on June 08, 2019, 12:32:30 PM
Yes will you write Hurdity and I will too. Plus anyone else who would like to join in in finding a solution. Lack of options re progesterone + intolerance must be one of the most common problems on the forum if not the most common, wouldn't it be fantastic if we could effect a change x
Title: Re: We need more options- feeling like a rant
Post by: CLKD on June 08, 2019, 01:48:43 PM
NICE appear to be involved in all drugs that are passed for UK use.  They also have the power to say 'no' to often essential medication i.e. cannibis for children with continual fits, even if it helps.

"in line with NICE's recommendations. However, as explained above we have not published technology appraisals guidance on dydrogesterone or progesterone. "  either they do recommend, or they don't.  Unless there's a hidden agenda?
Title: Re: We need more options- feeling like a rant
Post by: Hurdity on June 09, 2019, 08:12:43 AM
CLKD - I am not totally clear about NICE's specific role in meds but I understand that when drug is first introduced - (and by this I mean the drug itself, the preparation containing a new active ingredient, not for example a new commercial preparation of a previously available drug) - then NICE Looks at all the evidence and makes recommendations. I think cost comes into it.

In the case of Duphaston - I don't think NICE would be involved - as I found on the netdoctor site - it was withdrawn for commercial reasons, nothing to do with NICE. The active ingredient of Duphaston - dydrogesterone must have been approved years ago  and is still available as part of Femoston.

In any case Duphaston is available elsewhere in Europe so I can't fathom why not in UK since it is obviously still commmercially successful.

I think we should write to Mylan again - and hopefully not be fobbed off!

Also I found that the MHRA licenses drugs depending on the category:
https://www.gov.uk/topic/medicines-medical-devices-blood/marketing-authorisations-variations-licensing

The closest category is for marketing  a product which already has a licence in other EU countries - and the process is very straightforward:
https://www.gov.uk/guidance/apply-for-a-licence-to-market-a-medicine-in-the-uk#MRP

There doesn't seem to be a category for re-authorising a product that previously had a marketing licence but the company would know.

I wonder if other gynaes have also put pressure on the company or have made approaches? Dydrogesterone came across favourably in terms of breast cancer risk - and evidence so far shows it is the most "breast friendly" - lowest risk - of the synthetic progestogens as it is very close in structure to progesterone itself.

I'm rambling. I'll write. Let's all write (to Mylan). We may end up getting a standard response but we can but try....

I can't see on this page whether you put the e-mail address on the other page Perinowpost - but if not here it is: [email protected] .  Hopefully the e-mails don't just get ignored or lost in the ether....

Here's another one:
[email protected]

Maybe we should start another thread with dydrogesterone in the title so that other members see it?

Thankyou Perinowpost for starting all this off!

Hurdity x

Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on June 09, 2019, 09:39:26 AM
It was Pepperminty who set things off, she's also been instrumental in driving this thing forward. And she's right we do need more options. I'll write later when I get some time, let's all write (this is an open invitation to all) to the email that Hurdity has supplied. Fingers crossed, we can do this x
Title: Re: We need more options- feeling like a rant
Post by: pepperminty on June 09, 2019, 03:17:45 PM
Hi, joint effort between all ! I will write too when I have a moment this week and my head is clear. There is strength in  numbers, we all deserve better and more options- after all we are 51% of the population.

PMX
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on June 11, 2019, 11:13:47 AM
I've written again to Mylan, I will update as soon as I've heard back x
Title: Re: We need more options- feeling like a rant
Post by: heavenlyblue on November 11, 2019, 11:20:09 AM
Sorry to bump an old thread but I was having a look through a few (all wonderfully helpful) and I found this one.  I wondered how it was all going?

I will definitely do an email - power in numbers and all that :-) 
Title: Re: We need more options- feeling like a rant
Post by: Sgtvhilts on November 11, 2019, 02:24:47 PM
Wow- I did not know dydrogestone came alone!
I am swallowing Femeston for progesterone purposes as I cannot tolerate the old urogestan, in fact dydrogestone is the only one I do tolerate.  I am on patches as well.
GP happy to prescribe, but meno oh no- to far out of the nice guidelines for them.......
Feeling pretty good on my self invented regime, but would prefer just to have the dydrogestone alone
Title: Re: We need more options- feeling like a rant
Post by: Perinowpost on November 11, 2019, 04:50:11 PM
Hi all

I followed this up and rewrote to Mylan about all this but didn't even get a reply!  Since then I've been really busy, and also given all the shortages we're suffering I sort of lost my mojo with it all.

Any suggestions ladies?x
Title: Re: We need more options- feeling like a rant
Post by: Hurdity on November 11, 2019, 05:59:52 PM
I never got around to writing - soz folks - but terrible that you got no reply Perinowpost?! We should all make a concerted effort ( at least those of us who didn't before - I think you've done your bit Perinowpost!).

Another suggestion - those who see an NHS (or even private) consultant at a meno clinic - can you ask them if there are any plans to bring it back to UK or if eg BMS is putting pressure on pharma etc? After all they seem to be in close touch with the companies especially now in relation to the shortages....

The point is Sgtvhilts is that it used to be available in UK as Duphaston ( produced by Mylan) but withdrawn (from UK) for commercial reasons more than 10 years ago.  It also used to be used for luteal support in pregnancy if I recall and I think its use for this was questioned ( vague recollection of something I read)? Since then though HRT has seen an upsurge (no ideas on the stats) and especially the body-identical ones or nearly so - Dydrogesterone being the closest synthetic progestogen to progesterone. Annoyingly Duphaston is still in production - is available in Eire and elsewhere in EU (some countries) but not UK - so it doesn't even involve the company having to manufacture something different - just needs re supplying or licencing or whatever. I would have thought they would want the extra sales?

Hurdity x

Title: Re: We need more options- feeling like a rant
Post by: Sgtvhilts on November 12, 2019, 12:11:05 PM
Hi hurdity
Would that mean you could get it here off license??
That is a weird decision to just withdraw it , when still making it and available elsewhere.

Even some of the older sulphonamides ( pre antibiotic) and barbiturates, which are most defo hardly ever used and  certainly commercially non viable are still available.
Defo more to it than that.
Did Milan launch a similar new product ( more expensive of course) around the same time ?
Otherwise it is very odd.
Title: Re: We need more options- feeling like a rant
Post by: Hurdity on November 12, 2019, 06:28:59 PM
Hi there Sgtvhilts

The weird thing is it just doesn't seem to be available at all in UK even off licence. What is very odd is that as I said it's available in Ireland and France and many other countries - but Femoston was made before 2008.....so I can't fathom what commercial reason there could be. It was originally made by another company which bought by another which was bought be Mylan but the timing doesn't coincide and anyway if the are still producing it - it's a mystery!!!

Someone could write to someone in BMS or their meno consultant and see if there is any more info or plans to make it available again....as well as the company....again?

Hurdity x
Title: Re: We need more options- feeling like a rant
Post by: KiltedCupid on November 12, 2019, 07:06:10 PM
I vaguely remember researching separate dydrogesterone when I was on Femoston and in fact I think I bought some. Anyway, it's available in Spain, so for those ladies who'd like to use it separately and holiday there or have friends/family who do, it's available in 10mg tablet. Presumably it's the same as all hrt in Spain in that you can purchase from a pharmacy without a prescription.

https://www.vademecum.es/equivalencia-lista-duphaston+film-coated+tablet+10+mg-espana-g03db01-es_1
Title: Re: We need more options- feeling like a rant
Post by: Sgtvhilts on November 12, 2019, 10:09:12 PM
Hi kilted- I just followed that link and it is available everywhere apart from here. The is really weird.
Does that link offer it for sale.... don't understand any Spanish to follow links.
I wonder if anywhere does on line sales?
Title: Re: We need more options- feeling like a rant
Post by: Hurdity on November 13, 2019, 05:00:26 PM
Hi again Sgtvhilts

I have already checked this ages ago lol (in extremis!) - the fact that it's widely available and whether it's available online  ::). It does but looks like only from US or sold in dollars at absurd prices. It is not a long-term solution though anyway - ie buying online! It's not to be publicised anyway on the forum (links to buying stuff not allowed).  This subject has been discussed ever since I've been on the forum. I think there might have been some still available when I first joined, lurking in some gynaes stores maybe?

We need to have it available here in UK now and prescribed properly by meno specialists and GPs!!! I feel your pain!

Also I think I've found the reason - which is what I was suspecting after thinking about what you said about the launch of another product - Utrogestan first became available (licensed) for HRT in 2007 and before that there was no bio-identical progesterone for HRT (I used Cyclogest off-licence until 2011 which my enlightened GP used to prescribe).Therefore it could have been in anticipation of the reduction in Duphaston being used - possibly with infuence from the medical establushment - who knows?  However now the situation has changed with so much emphasis on body-identical or progesterone derived progestogens so time they re-visited that decision....

Hurdity x
Title: Re: We need more options- feeling like a rant
Post by: KiltedCupid on November 13, 2019, 07:44:53 PM
Sgtvhilts - no, that's not a link to an online pharmacy, just to show it's available in Spanish pharmacies. From memory, but it's pretty vague as it was about 4 years ago, I asked for it in a Spanish pharmacy and had a consult with the pharmacist (non chargeable) as I wanted to use it instead of utro alongside e-gel and I was ok-ish on femoston. Turns out I didn't absorb EGel well so it didn't work. I wouldn't mind trying it again though as it wasn't a nasty prog.
Title: Re: We need more options- feeling like a rant
Post by: Hurdity on November 14, 2019, 08:47:30 AM
Well I finally got around to writing yesterday eve (to Mylan) - but don't hold out much hope in view of others not getting a reply....

Hurdity x