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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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  • ykay
    ykay karen96338

    Posted

    Exactly how I feel Karen.  Good on you for making a stance.

    We know our bodies better than anyone.

     

  • tia77
    tia77 karen96338

    Posted

    Hi Karen96338 

    I also was weaning myself off Livial and was down to 1/2 tablet each 2. day and all hell broke loose .... bad headaches, joint pains, all Fibromylagia symptoms worsened and I had hot flushes so bad I could not sleep as they occured every 20 minutes. Now my doctor has put me back on my dose which is 1 Livial every second day. I was on the lower dose of 1/2 every second day for 5 weeks and symptoms got worse. I also had breast tenderness , did anyone else have this when trying to wean off Livial or during menopause?

    Now it is my 4rth day back on the regular dose. The only thing I could report as slightly negative is that my skin ( always tends to be on the oily side) has broken out a touch again with tiny pimples here and there and they were just about gone whilst I was weaning myself off the Livial.

    But I would not wish for anyone to be denied this treatment which to me changes the quality of life so much for the better.

    Warm regards from a hot and stormy Tasmania 

    Tia smile

    • georgina88796
      georgina88796 tia77

      Posted

      Hi there Tia, why did your Doc take or want to take you off of

      Livial?  In my case it was because I have been on for so long,

      about 14 or 15 years.......and soon I will be 70.............I dearly

      want to go back on it, but have spent half the night up reading

      why I should not do so........have my doubts about all these

      tests they make and then pronounce their "findings".....anyways,

      I did not have breast tendernesswhen weaning myself off Livial,

      about menopause.........that was when I was 56 or 58, so I can

      truely remember. Best regards, G

    • karen96338
      karen96338 tia77

      Posted

      Hi Tia, I always have had tender brests anyway I know whlist I have been taking HRT they have grown!!!! but wished I had them when I was young too late now!! the only downside of taking it was I gained weight, but to me thats a price worth paying!! I really dont want to be skinny and miserable I would much rather be fat and happy hehe x

      Warm regards,

      From a cold and rainy England as always!!

    • tia77
      tia77 georgina88796

      Posted

      Hi Georgina88796

      My wonderful doctor passed away a year ago and I have been searching for a new doctor and was very disappointed in the one I had and now changed to a lovely female doctor ( a general practician) again. My male GP wanted me off the Livial as he felt I had been on HRT long enough ( he was a young male and really had no idea about some things I feel) so my new doctor was very sympathetic and just said it's good to get an idea how your hormones are doing so we now know I cannot lower my Livial and said perhaps we will " try" again in a year or so but only for 2 weeks and not for 6 weeks as this other doctor made me do.

      We now have the worst heat wave for spring here and my hot flushes are still here although getting less now smile.

      Since I also have Grave's disease and other auto immune troubles, IBS , Fibromyaliga and more I get a lot of symptoms and it is hard to know what comes from what... also got diagnosed with Toxoplasmosis which made me feel very ill like glandular fever.

      I am having a mammogram in the next few weeks to make sure the sensitive breasts are nothing to worry about, just the regular check up anyway. smile.  Since Fibromyalgia causes so much pain and in so many different places it is sometimes hard to know where the pain is coming from wink

      Warm regards from a hot Tasmania 

      Tia

    • tia77
      tia77 karen96338

      Posted

      Hi again Karen smile

      I agree with you about rather having more weight and quality of life being better than skinny and miserable.

      I also put on weight since being on  Livial but also have had breast tenderness most of my adult life on and off but it got better during the last 4 years whilst I was on Livial. I always have had a large balcony wink as Mum would call our D cups wink  :P  LOL but I did notice as well that the size seemed to have increased a touch. 

      Warm regards from another too hot day for spring in Tasmania

      Tia smile 

    • karen96338
      karen96338 tia77

      Posted

      That's funny Tia, I going to call mine the balcony above the cake shelf (the shelf being my tummy!) I still have curves so I am happy with that, reading the threads from all the Girls on here my decision is made, I will continue to take it and get regularly checked, I am flying the flag in England for Livial, long may it be available to all xxx Lots of Love Karen x
    • georgina88796
      georgina88796 karen96338

      Posted

      Karen, I will drink to that, I just got back from going to the psycologist, as I am having a lot of problems with my life

      but I do not want to go into that...........and I have been

      warding off a depression and am very strong about that,

      but I believe that because I have left Livial, I am like super

      sensitive........and on the verge of tears all the time.......so

      I think ( I am thinking out loud here) that when I can get my

      hands on Livial, which could be in another 4, 5, or 6 months

      I am going back on it.  My psycologist said, even though I am

      going to be 70 that I should have my numbers counted for and

      see if I am too low by a gynecologist.......so I will be doing that,

      and I think I will just be very aware of what is going on and just

      check out my health and eat healthy and all..........I mean if I

      feel better on it, why not stick to it, until something ugly comes

      up, correct?  So now I just have to be patient and wait things

      out for the next 1/2 year.  Cheers to you my brave girlfriend!!

      All the very best. G

    • georgina88796
      georgina88796 tia77

      Posted

      Dear Tia, who lives in hot Tasmania, count your blessings, it is

      now getting cold up north in the U.S.A. and I hate the cold.  I am

      very happy to hear that you have found a woman doctor who 

      understands our "women problems"...........did you get toxoplasmosis from a cat or just from eating in a restaurant?

      As I told Karen today, I went to the psycologist and she recommended that I go to a woman doctor who specializes 

      in checking your hormonal count......she says that maybe they

      could find a replacement for Livial here in the States, but I do

      not think so as the FDA (Federal Drug Association) did not 

      approve of Livial, so why would they approve a similiar formula?

      So I am waiting out 6 months or less to get my prescription Livial

      from my girlfriends in South America.  I have a girlfriend who has

      stopped taking and will give me her expired and soon to be

      expired pills......I also strongly believe that most prescriptions 

      drugs do not expire........at least 5 or 6 years later.......have researched that......the drug industry wants us to buy and that

      is how they make their money......anyways.......it has been quite

      fun to write to all of you girls and hear what you all have to say,

      I know we may never meet, as we are all on different continents,

      but we most certainly can keep in touch this way.......God Bless

      You!! oo G

    • barbara92906
      barbara92906 georgina88796

      Posted

      thanks Georgina, interesting words....good you seen a psychologist...and a good idea to find a woman doctor who specialises in hormone counts..thought i would have done here at the gynae. hospital, but no such luck. take care....keep smiling...life can be hard at times, dont i know it, we all do i am sure...but i am sure God is in charge of our lives, and if we care for others also, and lead a good life if possible, he will be with us...or our Guardian Angels...i must have a few i think, i spent over 20 years, with over 7 elderly relatives, one after the other, strangely enough, my parents, and then aunts and uncle...and i learnt a lot from it about old age!! hey ho. time for my bed.B.  i dont preach, just air my views sometimes.....when going through hard times, or hearing of anyone else that is...i feel for them.God Bless..
    • georgina88796
      georgina88796 barbara92906

      Posted

      Thankyou Barbara, even though I have not met you, I feel connected to you, and want to thankyou for starting this

      chat on line on Tibolone and Livial.  During the day time I 

      think of all you ladies and what you have written, and I saw what

      you wrote a year ago and what you have written today and it 

      makes me think a lot.  About a lot of things and how we all, all of

      us go thru challenges in life and how sometimes we feel lonely

      and upset, but eventually all works out for the best, and we know

      we are not really alone........that there is something out there watching over us.  God Bless all of your Ladies who have written

      and you too Barbara!!  Sweet dreams and good night. oo G

  • barbara92906
    barbara92906 karen96338

    Posted

    very interesting...tia...we should all get together, i am sure we could help with sorting all this out...with those who study it...lets go to univ. eh...!! joke...livial seems very important..glad i started this...because it was SO IMPORTANT to me...those who have read my story, and what i think is now MS symptoms...i ihave this morning woke up to deaf in my right ear,was deaf in my left a few weeks ago, and had to hold the phone to my right ear...beleive this or not, it is true...but, i started on comoputer,and my right ear clicked...but still very quiet, and my voicre is to...and i can hardly hear the radio, or me tapping the keys here...food for thought...wish i never had to come off it, becuase of AGE...i am old i am told, despite it was a great life being on it.barbie.somehow to cope with the day now, and smile, hehe.!!
    • tia77
      tia77 barbara92906

      Posted

      Dear Barbara92906,

      I send you warmest regards and hope you do feel better soon <3 i="" hope="" it="" is="" not="" ms="" and="" that="" you="" will="" feel="" better.="" i="" did="" have="" an="" episode="" years="" ago="" similar="" to="" yours,="" i="" was="" in="" my="" early="" 40's="" then="" and="" they="" thought="" it="" was="" ms="" and="" could="" not="" find="" what="" caused="" it.="" years="" later="" they="" diagnosed="" me="" with="" fibromyalgia="" and="" told="" me="" the="" dizziness="" and="" other="" symptoms="" came="" from="" that.="" i="" send="" you="" warmest="" regards="" and="" best="" wishes=""><3

      tia >

      tia >

    • Tooban
      Tooban tia77

      Posted

      Fibromyalgia is not a diagnosis, its a description, and which means essentailly that all your muscles and tissues are sore. You are suffering from a generalised reaction to something that is in your body that is causing a generalised inflamation. You may want to consider a low inflamation diet and NO SUGAR. Not even a spoonful in your cuppa. Only 1 piece of fruit a day, no dry fruit, increase good fats such as cod liver oil and butter, no margarine, and have red meat at least twice a week. No preserved meats... And stay in the livial!
    • barbara92906
      barbara92906 tia77

      Posted

      thank you tia and tooban...yoiur words are so good...i am feeling awful today, now lost my hearing...missed the news...10.30 must go oand have breakfast..i love my food...thank you so much...livial has gone, they wont do that.love barbara.

       

    • barbara92906
      barbara92906 tia77

      Posted

      thanks Tia and Tooban..Fibromylgia has been mentioned...i really am going round the twist with so many things in me happening...i want to know what it is, and why it started so SUDDENLY with all the changes in this last 18 months...when i stopped livial....although had things long before that, it has literally snowballed lately.  DEAF now is NO JOKE..i hope and pray my sight will be o.k...although fading...thanks so much for your kind words...do not get  sykmpathy much here, but that is often the case, with nearest and dearest...not always though.take care. me to!! haha,B.
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