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[Furyan]

Today I’ve just had two consultations, one with a private menopause service, the other was my GP: both inform me that Nalvee is “licensed” for sequential/cyclical use ONLY, and not continuous, therefore they are unwilling to prescribe to post-menopausal women on a continuous regime because that would be “off license”. Which is illogical to my thinking because Femostan 2/10 can be taken continuously and is not limited to peri-menopausal women as I understood it. Further, Nalvee contains exactly the same dose of dydrogesterone as Femostan, which is 10mg. This is so frustrating! I don’t know who else I can turn to, I don’t feel I can realistically reduce my 100 patch so I can get away with less progesterone, as I feel ill when I do that. I feel stuck on micronised progesterone, which I am clearly sensitive to. I wish the mirena had worked for me 

[Mary G]

Furyan, that sounds like complete nonsense and a ridiculous excuse.  There is no reason why they can't prescribe it for continuous use or show some initiative and prescribe it off licence.  Are they hamstrung by NHS/NICE rules perhaps?  Did they give you a good reason why they can't prescribe off licence?

I was reading about a problem with the NHS and pharmaceutical companies today (partly over costs I think) and there seems to be a problem over drug licensing in the UK too. I suppose things have changed since you left the EMA.  I'm sure someone on here can fill everyone in on that better than I can.

Have you tried Cerazette (desogestrel)?  It would probably be a very good substitute unless you have a very specific reason for wanting to try dydrogesterone.

[CLKD]

MayB check directly with the Manufacturer for clarification? 

[Furyan]

Furyan, that sounds like complete nonsense and a ridiculous excuse.  There is no reason why they can't prescribe it for continuous use or show some initiative and prescribe it off licence.  Are they hamstrung by NHS/NICE rules perhaps?  Did they give you a good reason why they can't prescribe off licence?

I was reading about a problem with the NHS and pharmaceutical companies today (partly over costs I think) and there seems to be a problem over drug licensing in the UK too. I suppose things have changed since you left the EMA.  I'm sure someone on here can fill everyone in on that better than I can.

Have you tried Cerazette (desogestrel)?  It would probably be a very good substitute unless you have a very specific reason for wanting to try dydrogesterone.

I did get paranoid wondering if I was being unreasonable because how closed to the idea they both were. They only said it’s to do with what the medicines are licensed for but neither could explain why they didn’t feel able to prescribe despite happily giving it to women via Femostan on a continuous basis! The GP said she would refer me to the NHS menopause clinic but it doesn’t appear that she has - I read the ‘referral’ letter which only asked whether Slynd could be prescribed “off licence” instead. Sooooo frustrating.

The reason I’m keen to try Nalvee is because I’m extremely sensitive to micronised progesterone (much like when I was pregnant) and after reading about it in a post here I did a bit of digging around to find some clinical research on it. It looks to have a very favourable profile regarding stability and side effects. It’s actually been around for decades but was taken off the market for “commercial” reasons. It’s a synthetic that most resembles our own progesterone but is taken in significantly lower doses than utro, which is why I wondered whether it’s worth trying above all.

I was goung to look at cerazette too - just that dydrogesterone looks so attractive…

[Furyan]

MayB check directly with the Manufacturer for clarification?

What a good idea CLKD, I might just do this now. Makes my blood boil because there seems to be zero initiative or understanding when it comes to women’s care and we get such crap service as a result - whilst continuing to suffer with symptoms. I almost came away from the GP conversation feeling guilty for struggling with progesterone. Common sense tells me it was just her own lack of expertise but still, I felt bad.

[Mary G]

Furyan, I must admit I thought dydrogesterone sounded like a good option for me because stability is key considering I suffer with migraine auras.  I did try Femoston some time ago and it was a disaster because I had endless migraine auras but I wrongly put it down to the oral oestrogen content.

Having spent time researching dydrogesterone before taking the plunge and giving it a try, I'm afraid in my case it's not going to fly because I need to suppress FSH and LH to prevent migraine auras.  The Mirena coil (levonorgestrel), Slynd (drospirenone) and Duphaston (dydrogesterone) do not adequately close down the release of gonadotropin-releasing hormones so it doesn't create the stable hormone environment needed to prevent migraine auras. Interestingly I found compounded progesterone worked extremely well.  In my case, norethisterone is the absolute worst for instability closely followed by micronised progesterone and I'm convinced that's why women have so many side effects with Utrogestan.

Obviously most women don't have migraine auras but I think it's possibly the same mechanism that sets off some of the other progesterone issues that are frequently discussed on here.

I think you can buy Cerazette without a prescription from a pharmacy in the UK.  I really would give it a try if you can.  I don't take the recommended dose, I take 75mcg alongside progesterone gel and it works well.

I hope that helps.

[Furyan]

Mary G, I’ve seen you share about your migraine auras and every time it strikes me just how much some ladies must bear to get the right type of HRT ON TOP of the symptoms! Sounds like you tried more progestins than me so I appreciate you sharing your experience. Very interesting which types of progestins suppress our bodies and which don’t - I’m recovering from adrenal fatigue among a couple things and I don’t want to suppress my body’s own natural production of hormones because, at some point, I’d like to think I could wean off very slowly to allow my adrenals to take over as they were meant to. If cerazette does suppress our own hormone production, that could be an issue for when I eventually wean off the whole lot - well, I can only hope I’ll be able to do this, one day…

[Furyan]

I managed to speak to someone at the manufacturer, who advised that she cannot give definitive information about prescribing guidelines to members of the public, only medical professionals. However, she also mentioned that “any” medicine, including Nalvee, can be prescribed off label subject to the prescriber’s discretion. She has known Nalvee to be prescribed on a continuous basis to women for whom it was appropriate. I’m assuming this was without adverse effect if I understood what she ‘was not’ saying if you understand…

So - what I took from this is that some medical professionals, whilst also acutely aware of this information, unfortunately may not be so willing to use their medical ‘discretion’, for whatever reasons, to help a broader pool of women. I’m obviously going to have to search now for one who might be willing but it could be an uphill struggle whilst Nalvee is new to the UK market. My own private menopause consultant said he is not keen on synthetics because of the increased risk of breast cancer. He didn’t mention any concerns about the multiple risks of obesity, allergy-type breathlessness and enlarged painful breasts that’s being caused by the micronised progesterone though…

[Mary G]

Furyan, I think I would find a better menopause specialist or take a trip to Portugal.  I still can't believe how easy it was to just walk into a pharmacy and buy it over the counter without a prescription.  I didn't even have to order it for the next day!  It's a pity I won't be able to try it but for me it's not worth the risk.

The fanfare around the launch of dydrogesterone in the UK has turned into a washout because of mindless guidelines.  I would imagine it's the same group of inept people who still refuse to licence Utrogestan for vaginal use when the rest of the world has forever.

I assume you spoke to both doctors about your adrenaline issues and it didn't budge them.  The risk of breast cancer from synthetic progesterone is very, very small and perhaps it would be reduced further if they didn't dose women up to the eyeballs with it.  I take 75mcg Cerazette every day alongside progesterone gel and I don't get any breast pain but if I increased the Cerazette dose to the NHS approved 150mcg dose I would definitely have breast pain and bloating.  I don't need a high dose like that because I have regular scans and the last one registered a womb lining of 1mm.  God knows what it would have been with twice the dose, I probably would have run into problems.

It's interesting you mentioned Utrogestan and breathlessness, I used to get that after taking it at night. 

What are your plans now? 

[Furyan]

Mary G - if I wasn’t feeling so frustrated at the ludicrous and frankly illogical thinking that I’ve met up against with this and other things I’d smile at the way you describe them.

It took me a while to figure out it was the progesterone causing severe breathlessness (like painful lungs) because it was only when I went back to it after trying mirena and Tibolone I realised the direct link that was clear as daylight to me. I’ve mentioned it to several doctors both before and after making the link and each one looked at me baffled as though they were questioning my reality - one said she had never heard of progesterone causing breathlessness. I get it within a couple hours of taking each dose as I split it between morning and evening - along with fast heart rate. This is one of three side effects that I can’t live with as it’s debilitating.

I’ve heard back from a private menopause clinic today who said they are happy to consider prescribing off label on a continuous basis, but to be aware it’s expensive on private prescription. Bearing in mind I have to shell out for the consultation itself. I’m minded to book, pay and review with them and take it from there. While it’s a positive, it’s like a double edged sword considering the high price it comes at. Not to mention how grossly unfair (criminal even) it is for women to have to pay through the roof for standard care that they should be getting on the NHS. Women are being milked left, right and centre over their care - I should be in Portugal!

[Mary G]

It's an absolute racket isn't it. Anyone would think you were trying to get hold of crack cocaine, not legal medication.  We are talking about something that costs €9.85 for a box of 42 tablets and yet women are having to pay high fees for a consultation and then a hefty amount for the private prescription.  Any idea what we are talking about cost wise?  I know most menopause specialists charge £300 ish for the initial consultation. 

I've got a box up for grabs so I'll send you a PM.

[CherrySG]

I just asked my GP if dydrogesterone was available to prescribe yet and he has kindly prescribed it this morning on a continuous basis. I'll let you know how I get on.

I'm currently on Femseven Conti but I swear all the oestrogen is downloaded in the first couple of days! Plus, I can't put them on my abdomen or I get a rash, so they have to go on hips, bum, top of thigh, with a Tegaderm on top to keep them in place.

I loved utrogestan but couldn't deal with the appalling constipation if swallowed, nor the vaginal irritation if used vaginally.

Huge thanks to Hurdity for bringing it onto the radar, and to Emma for enabling me to check if it's on the formulary for my county - didn't know about this process, so it helped me to check before I requested it. 

[Furyan]

It's an absolute racket isn't it. Anyone would think you were trying to get hold of crack cocaine, not legal medication.  We are talking about something that costs €9.85 for a box of 42 tablets and yet women are having to pay high fees for a consultation and then a hefty amount for the private prescription.  Any idea what we are talking about cost wise?  I know most menopause specialists charge £300 ish for the initial consultation. 

I've got a box up for grabs so I'll send you a PM.

Thanks Mary G, I just PM’d you xx

[Furyan]

I just asked my GP if dydrogesterone was available to prescribe yet and he has kindly prescribed it this morning on a continuous basis. I'll let you know how I get on.

I'm currently on Femseven Conti but I swear all the oestrogen is downloaded in the first couple of days! Plus, I can't put them on my abdomen or I get a rash, so they have to go on hips, bum, top of thigh, with a Tegaderm on top to keep them in place.

I loved utrogestan but couldn't deal with the appalling constipation if swallowed, nor the vaginal irritation if used vaginally.

Huge thanks to Hurdity for bringing it onto the radar, and to Emma for enabling me to check if it's on the formulary for my county - didn't know about this process, so it helped me to check before I requested it. 

That’s amazing that you got prescribed it at GP level, well done for going for it! On the other hand, it makes me angry because it just goes to show how dreadfully unfair this is. I have to pay the best part of 400£ to get it right now. That part is so sad…

[CherrySG]

I just asked my GP if dydrogesterone was available to prescribe yet and he has kindly prescribed it this morning on a continuous basis. I'll let you know how I get on.

I'm currently on Femseven Conti but I swear all the oestrogen is downloaded in the first couple of days! Plus, I can't put them on my abdomen or I get a rash, so they have to go on hips, bum, top of thigh, with a Tegaderm on top to keep them in place.

I loved utrogestan but couldn't deal with the appalling constipation if swallowed, nor the vaginal irritation if used vaginally.

Huge thanks to Hurdity for bringing it onto the radar, and to Emma for enabling me to check if it's on the formulary for my county - didn't know about this process, so it helped me to check before I requested it. 

That’s amazing that you got prescribed it at GP level, well done for going for it! On the other hand, it makes me angry because it just goes to show how dreadfully unfair this is. I have to pay the best part of 400£ to get it right now. That part is so sad…

I know, I'm sorry you have this to deal with. It's really weird. You'd think, being a national system, that everyone would get the same medications as standard. 

I did get quizzed on whether I really needed both Ovestin and Vagifem today. I used to have to argue for that on a regular basis. It's all much harder work than it should be, although until recently they'd have cut off my HRT, as I'm 61.