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 Post subject: Re: Agnus Castus 20mg worked for me
PostPosted: Wed Aug 14, 2013 11:41 am 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
I tried everything on the guidelines and can honestly say that the only thing that worked for me were the GnRH Analogues. They are quite a severe treatment but then sever PMS/PMDD is a very sever problem.

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38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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 Post subject: Re: Agnus Castus 20mg worked for me
PostPosted: Wed Aug 14, 2013 2:00 pm 

Joined: Wed Aug 07, 2013 9:32 am
Posts: 2
Thanks - this is really helpful


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 Post subject: Re: Agnus Castus 20mg worked for me
PostPosted: Wed Aug 14, 2013 4:41 pm 

Joined: Tue Nov 13, 2012 4:03 pm
Posts: 7
We wouild like to reassure users of the NAPS Forum that in no way does sponsorship from pharmaceutical companies compromise our independence. Thier support is sought for Study Days – this is the norm for organisations including charities staging such events. Sponsors usually take stands, which have to be outside the meeting room, to publicise their products and these can be visited by delegates. NAPS plays no role whatsoever in promoting these products.

Publication of the NAPS Guidelines on PMS in 2010 was made possible by a grant from a phamaceutical company. The text was both independently written and edited and there was no input at all by the pharmaceutical company, indeed there was no contact at all re content, style and appearance.They paid us the grant and we used it appropriately.There is an ackowledgement on the back page and that had to be very carefully worded.

As PMDDsurvivor has accurately stated, NAPS relies on donations and membership to survive and that is the cruel truth.We hope that users of the Forum who are not NAPS members will appreciate this and will feel able to support NAPS financially either by sponsoring Carrie Sadler’s marathon - go to Carrie’s JustGiving page at http://www.justgiving.com/carriemarathon4naps or by making a donation to the Association (there is a DONATE button at the top of the Forum Home Page).

As regards the question of Agnus Castus not being available at the correct dosage,we will refer this to our specialist team for comment. Please be advised that as this is the holiday period response is unlikely to be immediate.

Jackie Howe
CEO NAPS


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 Post subject: Re: Agnus Castus 20mg worked for me
PostPosted: Sat Aug 17, 2013 6:56 pm 

Joined: Sat Mar 02, 2013 11:46 am
Posts: 9
Thanks for your response Jackie.

I am not surprised the pharma companies advertise their products at study days. As profit making organisations, donations will come with strings. I appreciate you are not endorsing their products, but the very fact they are there means their products are getting attention, where as non-patented treatments like Agnus Castus are not. Pharma companies have the money to run research trials and advertise/ push their products, whereas smaller herbal companies don't.

Is NAPS involved in any research into Agnus Castus and Red Clover? It seems part of the problem is that herbal treatments have not had enough RCT's conducted to prove (or not) their usefulness in treating PMT and PMDD. The research that has been conducted on Agnus Castus is very positive and for me and many women that visit my blog it has been the only thing (short of chemical and surgical menopause) that has worked.

What I hope for is that Agnus Castus is offered routinely before contraceptive and anti-depressant options are explored, but unless it is prescribable then the guidelines will do little to help change GP's approach to PMT. At the current dosage available (in the shops), women who prescribe for themselves will assume it doesn't work, or if they know to take 5 tablets (20mg) the cost will put many off. The guidelines are heartening and are a sensible approach to PMT, but without 'teeth' (the ability to obtain 20mg of Agnus Castus) then AC as an option will still be denied to many women.


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 Post subject: Re: Agnus Castus 20mg worked for me
PostPosted: Tue Aug 20, 2013 9:56 am 

Joined: Sat Mar 02, 2013 11:46 am
Posts: 9
Just sent this email to Dr Panay, who developed the NAPS treatment guidelines. Hope I got the right email address.

Dear Dr Panay

I came across your name on the NAPS treatment guidelines for PMS, which you have developed. In these you suggest Agnus Castus as a second line treatment after diet and exercise changes. Hurray! So good to see a respected doctor recommending herbal remedies.

Agnus Castus 20mg (standardised extract equivalent to 200mg whole fruit 10:1) literally transformed my life after years of unbelievable period pain and IBS, breast tenderness, irritability and tearfulness.

Before that I had tried a number of contraceptive pills (although I don't need contraception). I was given morphine to manage pain (making it impossible for me to drive to work or function, and as a secondary school teacher this was a disaster). Offered antidepressants (which I refused due to horrendous effects on libido). Finally I was given the Mirena coil, but after a week of ridiculous pain had to have it removed.

I was lost and depressed with the thought the only way forward was to stop ovulation permanently, which I really did not want to do for emotional, sexual and health reasons.

Then I stumbled on article on AC and the research conducted. This was five years ago. I haven't looked back since. My experience is not unique as the women who visit my blog testify

http://julietocallaghan.wordpress.com/2 ... es-agency/

http://julietocallaghan.wordpress.com/2 ... t-to-work/

However, getting Agnus Castus at the correct dosage has become almost impossible in the UK due to restrictions following the 2011 changes to how herbal medicines are sold. Traditional Herbal Registrations restricts 4mg per tablet and advise only 4-8mg a day. Despite extensive research evidence, notably by Schellenberg 2001 and 2011 that 20mg is the dosage required (and you quote 20mg-40mg on the guidelines).

It seems treatment of PMT is going backwards with this recognised herb basically rendered ineffective. So, as heartening as the guidelines are, they are of little use if GP's can't prescribe Agnus Castus or Red Clover and women can't get the right information about dosage from high street stockists.

Lack of research evidence from RCT's is the reason I have been given for why (despite the EMA monograph for Well Established Use) no suppliers have applied for a Product license to sell 20mg tablets. The reason given by suppliers I contacted is the cost, which is £100,000 for a product license (as opposed to £10,000 for Traditional Herbal Registration) and as Agnus Castus is not patented there is no profit to be made (and recouping of costs).

Clearly you believe Agnus Castus to be effective for mild to moderate PMT (although the women on my blog would argue it is effective for severe symptoms PMDD). I am appealing to you to raise this issue with MHRA and give the guidelines 'teeth' by widely distributing them to GP's (through your professional networks) and pushing for Agnus Castus and Red Clover to be prescribable.

Thank you for reading this and I really hope your voice can make a difference in spreading the word that Prozac and artificial hormones are not the first thing GP's should turn to when a woman complains of PMT symptoms.


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 Post subject: Re: Agnus Castus 20mg worked for me
PostPosted: Thu Aug 22, 2013 6:33 pm 

Joined: Sat Mar 02, 2013 11:46 am
Posts: 9
Dr Panay responded to my email and agrees that herbal products should be widely available on the NHS and NAPS will be looking into this issue.

It's great to have a medically trained professional endorse the use of herbal remedies such as Agnus Castus and Red Clover.

However, there is no research being conducted on either of these products in the UK. Although sound research evidence exists, there needs to be replication of studies, not least because many women (like me) take these herbs for many years (long term effects).

The problem comes down to funding and herbal manufacturers do not have the budgets for trials (herbs are non-patented).


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 Post subject: Re: Agnus Castus 20mg worked for me
PostPosted: Thu Aug 22, 2013 9:26 pm 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
Good to hear Julie. Sadly the lack of money affects so many health issues right now and the fact that NAPS depends heavily on donations and membership fees doesn't make it any easier. Hopefully this will change in the future though and herbal options will become more widely available for PMS sufferers.

_________________
38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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