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Tibolone long term?

Posted , 10 users are following.

karen96338
karen96338

Hi Girls,

I have been taking Tibolone for 7 years, and there has always been fors and against taking them. I would like to share my pesonal experience, I was told  by my Doctor to try and wean myself off them as I had hit that crucial stahe of 5 years where they do not recommend that you take them any further! I did what they asked and for three months I reduced to half per day, recommended rather than one every other day, I have to admit I managed well, didn't really have a huge impact, so I thought I would try half every other day to reduce it further, within a week, my symptoms came back with a vengeance, I felt generally unwell, my bones hurt, headaches, mood swings and panic, it was horrific, so on that basis I spoke to my Gp and I have restarted my Livial, one per day, to say that these tablets change my life is an understatement, for me personally the beefits far outway the supposed risks, I am happy I will take them for many years to come as long as you are checked I really don't see why you should suffer if you don't have to? Good Luck to you all and I hope that this post will at least make you feel a bit more relaxed. My Gp said that some women can manage after 5 years of HRT but some need it up until ten years depending on the severity of your symptoms, All Gp's are different, I think they just have to stand on the side of caution as with any drugs, For me, no-one knows my body like me, and if it makes me feel well and able to function normally then I am all for it, Tibolone for me has been a lifesaver and long may it be prescribed for us Girls.    

6 likes, 51 replies

51 Replies

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  • Tooban
    Tooban karen96338

    Posted

    My gyna said stay on it as long as you like, they only say stop at 5 years because they dont know the effect on the endometrium. So i had a curette and everything was fine. So im staying on it. I have patients mysefl who are in Their 70s and they are NEVER coming off! They tried and felt that life was not worth living. So,  Dont destroy your vitality because of a rule that has no justification. We have no choice - feel terrible and risk feeling worse, or stay on livial and maybe, just maybe you may get something that they dont know if it will happen or what it is. Just keep being checked.
    • ykay
      ykay Tooban

      Posted

      Hi there.   Here's one that is staying on it as well.

      I notice you said you 'have patients who are in their 70s and they are never coming off'............are you in a medical practice?

      Do you live in Australia or somewhere else in the world?

       

    • Tooban
      Tooban ykay

      Posted

      Yes, but im not a gp, and I live in sydney.
    • barbara92906
      barbara92906 Tooban

      Posted

      very interesting....i saw a person in gynae..last year, not a gp...and she seemed to say i must come off livial...i wrote to her again recently...about all the symptoms i have...and she replied, that it didnt seem like the symptoms i have had are any  relaation to coming of livial!!!!...if that makes sense.  in other words,nothing to do with coming off livial...why all these things happening to me...i have just read that a man in his 90s had MS..you can have it al your life nearly...and if you dont complain about little things...like losing your balance, or the bright light you do not like, so ..it does not get to the doctors files...and notes...but i look back, and i have had them.but got on with my work nevertheless....but livial was good, and i knew coming off i would have trouble, i sensed it..and i do now...some people will think it is imaginaiton, it is NOT...I KNOW, and i have a partner.....and livial is good for bones anyway, and i have had worse problems with my osteoarthritis since coming off it. so there...hahahaha.. and being deaf the last few days, is the last straw...cant hear phone, hold right to my ear, perhaps hear a message..cant hear pelple coming in..they just appear at the kitchen, or bedrooms..my partner, family, daughter..when she comes..she workaholic like me, only lives up the road..!! bye for now...must get back to oworking for the evening.thanks for reading this.barbie.
    • barbara92906
      barbara92906 Tooban

      Posted

      wish i couuld have found jone like lthat in the uk...no hopes at all..barbie.
    • barbara92906
      barbara92906

      Posted

      found one...i meant to say.,.typing too quickly..must go.
  • georgina88796
    georgina88796 karen96338

    Posted

    Hi there Karen, Barbara, YKay, Tia77 and Tooban, it has been a spell

    since I have written, and now is day 24 going on day 25 since I have stopped taking Livial and not only do I not feel like myself but I cry at

    the drop of hat, like when I first went into premenopause.... and I have started to read the books that you Karen asked me about, which were

    written in 2011 which are totally pro HRT, as I did not remember what

    was actually in the books I decided to start reading them.........and was

    surprised to see that the tests and research in the States was done

    by Medicare with women who were mostly heavy smokers, very obese

    and also drinkers......all whom were prone to cancer and heart attacks,

    therefore the tests came out that HRT was not good for you, ............

    anyways I have been reading and reading and the 2 women who wrote

    these books said that HRT was a must for all women, well into their last

    days on this earth..........unless of course one has at least 2 relatives in

    immediate family with breast cancer......anyways...........I am little by 

    little becoming totally convinced that I must go back on Livial......only

    wish I could get my hands on some now.!!! Have to wait though, at least

    5 months, so please bear with me and my moaning and groaning on

    how "Bad I feel".............the last time I wrote Karen with the names of

    the books my email was not sent out as it had to be confirmed by Patient,

    so I do not want to mention the names again.......anyways......I think it is

    wise to read up on all the material you can get your hands on where 

    people talk about the pros and cons........and look for as much material

    as you can in order to make a good decision.  I am going to google to see

    if Livial has something similiar here in the States, but I doubt it......I was

    told there did not have any..............I will research.  And now I bid good

    night to all my new girlfriends who are on or off of Livial.  All the very

    best to you all!!  And to all a good night!! G

    read the books that you asked me about Karen, I bought them in 2011

    and remembered that they were pro HRT, but did not read again or

    remember exactly what they said

    • barbara92906
      barbara92906 georgina88796

      Posted

      hi georgina..i throughly agree with you....get ;back on it, if it did you good...it was good for me...now off it for over 18 months...and so much has gone wrong in me body!....now battling with deafness...and i am sure it is MS...but can yoiu get a doctor to send me for tests...no...she hasnt time....rushes me out the door after10mins...anyway...i was happy on livial...quite happy now trying to sort my life out, and not depressed as the doctor looks at me, and says i am...keep trying....i have...be careful...and take care...like what yoiu wrote..must get on now..time flying by...i am nearly 81!..people say i look well, WHEN I AM WASHED AND DRESSED UP, takes hours, when one has osteoarthritis, and taken mouonds of pills...good to talk, friends. barbie..thankk you..

       

    • ykay
      ykay georgina88796

      Posted

      Good luck with trying to get Livial over there Georgina.  I hope you can do something about it.
    • barbara92906
      barbara92906 ykay

      Posted

      yes, good luck from me also...can only get it here on prescription..but when i was told once i could stay on for rest of my life, and the consultant retired....no one would listen...problems eh...she was a lovely consultant to...never mind..battling with other things now, and hope you get sorted ....they were tking care of my heart i do understand that, then low and behold i got heart failure....!!!!   because i am sure, i have developed so MANY OTHER THINGS since coming off it..may not happen to everyone..i knokw i am 80 now, and told i look well...li have MS symptoms, and many say that is what happens..cant get diagnosed, the doctors says why do i want to go to neurosurgeon...cant talk to her anymore...and difficult to change docs....but i felt something would be like that if i came off livial, as it was so suitable to me...and it is good for bones to, i had read that, but would some doctors and cosultants listen to me?? NOPE!! HEY HO..regards, B.
    • georgina88796
      georgina88796 ykay

      Posted

      Thanks ykay, I will have to have my girlfriends send it to me from

      South America.  Will keep everyone posted on this.  Am enjoying

      reading what all the other girls are going thru too........All my

      best, G

    • georgina88796
      georgina88796 barbara92906

      Posted

      Yes, thankyou Barbara, you can only get it via prescription in

      South America too...........but they are more easily availabe in

      the pharmacies there........tks. G

  • KatyE
    KatyE karen96338

    Posted

    Hi Karen,

    thanks for putting this post up, I found it really helpful.

    I've been taking tibolone for over 10 years now and have felt really well on it.  However I can only have renewed prescriptions after I've seen the practice nurse for a check up (6 monthly) and blood pressure check. On my recent checkup I was advised to think about coming off tibolone but to be honest I'm very reluctant as, like yourself I came off some years ago and went right back to square one so my GP put me back on and I've been Taking It happily ever since. The nurse seemed to be saying that at 67 I'm likely yo be well past any difficulties I might have experienced before but I'm not so sure. But I'm just wondering if I should continue to have a breast screening check and cervical smear done as a precaution (think I'm past the age for automatic recall for these). So I'm just wondering if other people do this who are on tibolone long term? If you or anyone else have any advice I'd be very grateful. 

    Thanks 

  • barbara92906
    barbara92906 karen96338

    Posted

    hello  karen..this was wonderful for you....i think i started this blog afew years back, re livial....i was told to stop taking livial....coiuld not get a prescription, doctors nok longer signed the prescription....that was the end of the good times...gradually the old age came like a whirlwind!!....allsorts of things happened..cant go into detail here....so much happened with my health...

    but i suppose doctors must be right..i often wonder if i could have stayed oin the livial, i would have had a much better life....but who knows..!  take care and have fun....

    anyway...

  • Query4me
    Query4me karen96338

    Posted

    Found this site very interesting . I have never taken hormones through my life and never suffered too much with meanpause. Now at 70 what with severe oesteoarthrtis my GP has recommended I go on this after doing my blood count and hormone tests. Apparently it also helps with mobility and to lower cholesterol .

    So today is day one - Your feedback has been encouraging Thanks

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