Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Murphydurf on February 05, 2017, 09:48:06 AM
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I wonder if one of the Tibolone girls could give us a simple, how it works/what's in it/safety comparison to BHRT guide to Tibolone.
I'm sure there's lots of ladies, myself included who'd like that info in a simple straightforward format. Apologies if it's already been done.
Mx
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671819/
I'm useless at explaining this, I'm still trying to get my head round it all but it seems it's a synthetic that mimics or alerts our receptors to give the benefits of oestrogen, progesterone and testosterone
I've also heard the word steroid used x
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Indeed, Murph!
It's a drug called a STEAR, which is different to other HRT's. It's effectively a steroid which is broken down into components that have weak estrogenic, progestogenic and Testosteronergic properties. It's a very old drug, with a long proven track record. It preserves bone and is not shown to raise the risk of DVT. It doesn't increase the density of breast tissue and is not known to increase risk of breast cancer. It should be taken post menopausally or after TAH/BSO. It has potential to improve libido due to Testosteronergic effect. It's shown to improve vaginal secretions more favourably than other HRT's, thus helping with VA. It's the only licenced HRT to include Testosteronergic properties. My GP has ladies who are still on it over the age of 60 - after this age, there is a slight raise in stroke risk but ok to stay on it if monitored by GP and patient is aware of risk.
Dose is 2.5mg daily, in tablet form and can be taken any time to suit with or without food.
Side effects are minimal - from the ladie's experiences on here it tends to be joint pain at first and some dizziness with some insomnia which seems to settle with time. Mood can be a bit wacky for the first few weeks, but nothing major - it's just the drug settling in.
I hope this helps! xxxxx
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Brilliant Tempest - sounds amazing! Why aren't we all prescribed this? Is it pharma issues again?
Mxx
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It's because bio identical transdermals are now the 'preferred choice', even if the blasted things don't work........ >:( >:( >:(
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I'm going to have a chat with GP about Tibolone.
Mx
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Good thinking, Murph! As I always say, HRT should fit US and our needs - we shouldn't have to struggle on endlessly with a type/delivery that doesn't work for us just because it's the 'in thing'. xxxx
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Fab thread murphydurf and great idea
I shall most likely be joining the tibolone crew soon 😊
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Oh Tempest you are great at explaining things !
I can really vouch for the benefits for VA. I haven't used Sylk externally for a couple of weeks now with no problems, the only reason I haven't used it is because I've had NO soreness to remind me. I'm actually forgetting some of my vagifem doses too because of the same reason and I'm lubricated
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It just sounds too good to be true -ie it could provide all the missing elements and be slightly less harmful than standard hrt? Is that the case?
Mx
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What drew me to it was that it provides all 3 hormones, provide the wrong word but what Tempest said lol
Something's seriously been missing for me during meno and T gel just wasn't doing what others were saying it was doing for them
I've still got things I'd like to improve, this social anxiety is the biggest (sorry I go on about it so much but it's really near wrecked my world a lot of the time) but this weekend being away with work has shown me I've made some improvement
To be honest if dog muck was the answer I'd try it ! X
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I saw a study (I'll find the link, as I know some members like proof) that in conclusion, the researchers said it came very close to being 'the perfect HRT'. This was the exact words used......
For this reason, I'm going to give it a good trial. If this doesn't work, then I'm throwing in the towel as NOTHING will for me!
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Annie0710 - sounds like it's doing the job for you! Great news, I remember you talking about T and not getting results, I hope it continues to keep doing good things for you. It's such a good feeling to finally say goodbye to the person you didn't want to be and continue to feel better.
Tempest - I'd be really interested so see that research if you can find it.
Mxx
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Just to be clear - you don't need additional prog or to have a bleed? I still have all lady bits.
Mxx
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No apparently Tibolone covers everything apart from VA sometimes x
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I've been following your experiences on tibolone with interest. Since my hyster with bso in May I've just been getting on with meno. Now however VA symptoms are appearing as are aching muscles. I'm waiting for my referral back to consultant who didn't want to prescribe HRT after op due to my stage 4 endo. I hope she will be more receptive when I suggest tibolone. I don't want to be 'old' at under 50 but that is how I am feeling at the moment.
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Good thread, Murphy. I was told I can't take it because I'm still perimenopausal and have vascular issues. I guess I'll have to wait until menopause strikes and hope for further development in this area :(
I have a friend who took Tibolone for 7 years until she was 60. She absolutely loved it, she told me it was the best time of her life.
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Thanks menomale - there does seem to be a lot of positives re. This treatment and I'm certainly interested. Will chat this week to GP.
Mx
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I'm going to search the reference out Murph, and post it. I spent literally HOURS researching Tibolone before I decided to try it - pretty much every paper ever published so give me a mo. to find the specific one.......Not only that, but I'm on here sporadically today as my boiler has just blown up (no, that's not a euphemism for a menopause symptom ;D ;D). Guy has just been to cap the gas off in case of a leak, and now waiting on engineer.
Hi, stick_insect! You know we have a thread for surgical menopause ladies? I started one just for us, so do join in. :) Tibolone has been used very successfully in ladies following endo. - again, I'll look out the research papers on this for you. So have you been without HRT since last May? I can relate - I too went almost a year without any HRT following my surgery and as you're under 50, I'm guessing we're close in age? Apart from the VA and aching muscles, how are you doing?
Oh, bless your heart Menomale! I too have some info. for you on Tibolone for when you reach that stage - I don't think it'll be long! You'll particularly appreciate the effect it has on GABA receptors in the brain - this is what caught my eye, and 'clinched the deal' for me to try it (and why it's good for anxiety - it's the prog. aspect that acts in synergy with the estrogenic and Testosteronergic aspects but is not as aggressive as 'traditional' progesterone. :)
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I tried Tibolone and felt great on it - flushes gone within a week, slept like a baby and libido much improved. My only problem was, it gave me bad acne - such a shame - I couldn't live with a face and back covered in spots. Not everyone gets the acne problem - I believe it's the testosterone effect. DG x
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There is a good introduction to Tibolone here:
https://www.menopause.org.au/images/stories/infosheets/docs/AMS_Tibolone_for_post-menopausal_women_April_2015.pdf
Also the best source for information about safety and efficacy are the Cochrane reviews which trawl the net looking at all the studies and trying to come up with the pros and cons and if possible a consensus - since studies are so variable and often conflicting.
There is a short review here:
http://www.cochrane.org/CD008536/MENSTR_short-term-and-long-term-effects-tibolone-postmenopausal-women
Although it had not been shown conclusively to lead to endometrial cancer the product info I looked at said that the risk could be increased because Tibolone increases endometrial thickness - which can lead to cancer.
As far as I know there are no long term studies on its effects and safety so I understand its use is only recommended for a short time for this reason but I'm not sure if there is anything definitive on this? Also not recommended over 60 due to possible increased stroke risk - but I think this is the same as for any tablet HRT - that if you are already taking it the risk is less.
Re Tibolone vs "bio-identical hormones" - I think the argument would be the same for any synthetic hormones or hormone-like substances. The metabolic effects will be different from our own hormones so there could be unwanted or harmful effects. Also with Tibolone - in terms of the active substances that Tibolone converts to (ie two oestrogenic compounds and one compound which is weakly progestogenic and androgenic) - you can't control which of the three hormones you are getting, or rather, mimicking - so no possibility of tweaking doses.
In addition the oestrogenic effects are low so for some women the oestrogen is insufficient to eliminate all adverse symptoms. It does have a bone-protective effect though :). The other disadvantage is that some women may not be able to tolerate the negative progestogenic effects.
However I don't think the overall impact is fully understood - it is a tissue specific compound so the metabolites act in a different way in different tissues,
Thanks for posting that info Tempest! I looked up STEAR as I hadn't heard of it - and this is the name given to the type of compound Tibolone is Here is what it says on Wikipedia:
....and differs mechanistically from that of selective estrogen receptor modulators (SERMs) such as tamoxifen, which produce their tissue-selectivity via means of modulation of the ER.[15][16] As such, to distinguish it from SERMs, tibolone has been described as a "selective tissue estrogenic activity regulator" (STEAR),[16] and also as a "selective estrogen enzyme modulator" (SEEM).[17]
https://en.wikipedia.org/wiki/Tibolone
Anyone for whom conventional HRT is not working and have tried numerous options and doses, and is within the right age range, not contra-indicated, and if you are not bothered about what type of HRT you use as long as it works - well it's got to be worth a try at least in the short term! I did think about it myself a few years ago (for libido) but I was over 60 at the time and also worried about the possibility of endometrial thickening so decided against it.
Hope this helps
Hurdity x
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I'm doing not too bad. Some days are worse than others. I wake about 3 times per night with hot flashes. I can have between 1 and 10 during the daytime depending on what I've been eating or drinking. I don't tolerate too much estrogen well - I was a mess during pregnancy- stressed and tearful and headachy - the same happened just before I had to have the hysterectomy. However I must be progesterone tolerant as was on POP when my child was small and felt ok.
I also have had very dry eyes and sore teeth and dry throat since Christmas. Luckily no anxiety- and headaches have gone.
TBH I can deal with the flushes it's the terrible wasting of muscles and the thought of a non existent sex life that has made me think of tibolone
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I've just finished my 3 month prescription of Tibolone. It comes in three strips with a total of 84 tablets and as I've posted before the flushes, sweats chills and aches have all gone, as well as dryness down below.
Everything I've read says it can take up to 12 weeks for everything to kick in and balance out but even though I noticed a difference after 2 weeks I must say after 12 weeks I feel great.
I'm just kicking myself for not sorting out a repeat prescription in time.
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That's a great positive report blakeygray. Would you mind telling me what you were using before and where you are in meno.
Mxx