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I would like to come off Tibolone

Posted , 6 users are following.

paula08283
paula08283

Hi I am 42 and have been on Tibolone for 7 years and I want to try coming off them, my GP keeps saying I need them to prevent osteoporosis. I have gained about 2 stone since been on these and my doctor keeps saying it's nothing to do with the tablets, but I eat healthy gym 2/3 times a week but I can't shift a pound. I am also constantly tired I am normally wanting to go to bed by 830!!! Does anyone know if I can just stop taking them or do I need to wean off them? X

0 likes, 12 replies

12 Replies

  • barbara92906
    barbara92906 paula08283

    Posted

    Very interesting Paula....but a difference in age!....I had been on Tibolene for quite a few years, up to age 80....must have been 20-30 years....for HRT....but I knew the instructions said they were also good for osteoporosis.....during late 90s and through 2000s, i have had series of operations, two hip and one knee replacement, and other things....I knew I had bone problems....also have temporal artritis and polymyalgia....and other things....then the doctors wanted me to COME OFF Tibolene, because of my age...I fought like mad with it, wrote to hospitals, and allsorts of addresses....no one agreed with me, just said it is doctors decisioin....I did see a very sernior Obstetrician, years ago, who said I could stay on them for the rest of my life, if they suited me....and they were fine - however she had retired, and i could no longer get to see her!....Spring last year, I was taken off them....I could not get a repeat prescription....and I have steadily gone down hill since, and since my 80th in November....I now seem to have  heart failure, tablets and water tablets for that....still on steriods for temp. artritis and polymyalgia.....and just so many pills each day....for me, I feel coming off them has made me like this....i hardly able to go out, cannot drive now....eyes not too good....but i keep busy, as i try to care for myself, for various reasons....is it just your weight you want to come off them?     I think I put on weight a bit, but they worked for what i wanted, and that was the main thing for me....as you are much younger, you need to listen to the doctor I suppose....but my doctors would not listen when I said it was suppose to be good for osteoporosis, which is what i had! One can't win either way....whether young or older!....you are young....!! best wishes, and best of luck sorting it out....sorry i cannot be much help, but just had to tell you my story, re the doctors!  God..Bless.
    • ykay
      ykay barbara92906

      Posted

      Not a lot of GPs support Livial/Tibolone these days so it is refreshing to hear of someone who does.

      I honestly feel that as soon as our bodies lose eostrogen we start to fall apart but if you feel you should go off them that is up to you.

      I am nearly 73 and have been on Livial (2.5mg)  since Jan 2008 - before that I struggled with all sorts of so-called 'natural' products. 

      At one stage a doctor advised me to stop taking it and I felt so bad I went back on them within a month or so. 

      I take one tab every day except Wed and Sunday.

      Maybe you need a B12 boost for tiredness as I don't believe that Livial is the problem there.

       

    • ykay
      ykay barbara92906

      Posted

      Not a lot of GPs support Livial/Tibolone these days so it is refreshing to hear of someone who does.

      I honestly feel that as soon as our bodies lose eostrogen we start to fall apart but if you feel you should go off them that is up to you.

      I am nearly 73 and have been on Livial (2.5mg)  since Jan 2008 - before that I struggled with all sorts of so-called 'natural' products. 

      At one stage a doctor advised me to stop taking it and I felt so bad I went back on them within a month or so. 

      I take one tab every day except Wed and Sunday.

      Maybe you need a B12 boost for tiredness as I don't believe that Livial is the problem there.

       

    • ykay
      ykay barbara92906

      Posted

      Not a lot of GPs support Livial/Tibolone these days so it is refreshing to hear of someone who does.

      I honestly feel that as soon as our bodies lose eostrogen we start to fall apart but if you feel you should go off them that is up to you.

      I am nearly 73 and have been on Livial (2.5mg)  since Jan 2008 - before that I struggled with all sorts of so-called 'natural' products. 

      At one stage a doctor advised me to stop taking it and I felt so bad I went back on them within a month or so. 

      I take one tab every day except Wed and Sunday.

      Maybe you need a B12 boost for tiredness as I don't believe that Livial is the problem there.

       

    • ykay
      ykay

      Posted

      Sorry barbara92906

      I don't know what happened by the reply I gave to paula08283 also went in to your replies!..............please disregard that, however I would like to comment to you as follows.............

      I am nearly 73 and have been on Livial (2.5mg) since Jan 2008 - before that I had a few years of spending money and wasting my time with so-called 'natural' products.  Prior to that I had been on HRT for many years. 

      I too spoke with a senior specialist who told me I could stay on the tabs for life.

      I believe that women need oestrogen to lead a quality life and that the lack of this leads to a detrioration of skin tone, hair, well-being and body generally.

      I happen to run a large group of mature women (ages from 48 through to 92) and I am quite amazed at how those who are still taking oestrogen in some form are so much happier and look so much younger than their peers.

      I only take Livial five times a week but my new doctor has mentioned I have been on them too long and would like to see me off them .... she will only give me two scripts at a time these days but I am persisting in staying on them at this stage.   When I decide it is time for my body to give up and dry up I may consider coming off them..........and that may not be until I am 100!

       

    • barbara92906
      barbara92906 ykay

      Posted

      just replied to paula, with a copy to you i had said..so you can read that...keep going....yes, vote for livial.....until 100!!!! haha, if i reach that far, as i am now....i am sure all this would not have happened if i was still on livial...must get on now. B.
  • ykay
    ykay paula08283

    Posted

    Not a lot of GPs support Livial/Tibolone these days so it is refreshing to hear of someone who does.

    I honestly feel that as soon as our bodies lose eostrogen we start to fall apart but if you feel you should go off them that is up to you.

    I am nearly 73 and have been on Livial (2.5mg)  since Jan 2008 - before that I struggled with all sorts of so-called 'natural' products. 

    At one stage a doctor advised me to stop taking it and I felt so bad I went back on them within a month or so. 

    I take one tab every day except Wed and Sunday.

    Maybe you need a B12 boost for tiredness as I don't believe that Livial is the problem there.

     

  • barbara92906
    barbara92906 paula08283

    Posted

    hello, replying to Paula again, also ykay....yes our bodies do need oestrogen.....a senior consultant,now retired, as it said,told me i could stay on livial for life, if i felt better....i do not feel so tired,             at times i do, but keep going....if i can....well, when i overwork, and flake out late at bedtime,very late, i am tired....but try to keep going otherwise...i am a typist, i like to keep inn touch with emails, and friends, and family who seem to be flying  all over the world...one coming back Wed. from ausie, and n.zealand, been out there with her nice boiyfriend, for 5 months, whhew....and her sister is getting married to her GUY she says, in july....eldest, granddaughter.....a teacher.....youngest grandson of my sons famioy, a8 this week....going to kilimanjaro, climbing in july...not time to get tired!....and i love cooking if i can..cook for my partner, and me, and have to mince my hard food, and make me soups, as lkost bottom teef...due to osteoporosis in my body...it is all go....but i am sure i should not hae come off livial....but doctors were so insistet....they are younger, !!!! keep going, keep smiling..
  • amanda2501
    amanda2501 paula08283

    Posted

    Hi Paula I'm not to sure about people coming of them, all I no is that if my pain what I'm still having is still there by September then they may give me a histerectmi, and the injections and the tablets should stop me having enditrimosis. They did mention to me if I don't want to carry on then they will stop, I've only been on them both since January.good luckxx
  • christine20477
    christine20477 paula08283

    Posted

    Hi Paula (and others),

    I am 62 and have taken HRT in one form or another since I was 39, with one or two very short breaks.

    I was due to have surgery at the end of July. At my pre-op check-up yesterday the assessment nurse asked me what Livial was, so I told her that it was a low dose HRT. Apparently I should have been asked at my original consultation with the consultant three weeks ago if I was taking HRT. The outcome of this oversight is that my surgery had now been postponed until September as I need to be off the HRT for at least a month before surgery. 

    The last time I stopped Tibolone 2.5 I went 'cold turkey' and within about 8 - 10 weeks resumed it again because I found it very difficult to cope. I do have a chronic condition that causes me all sorts of other problems, including disturbed nights, so I think stopping HRT was the final straw.

    However, I am going to try a reduction in dose, maybe one every other day for the next week, then one every third day for the second week before having to stop completely in preparation for surgery. By the time I have my surgery I feel that I will be able to judge if I can cope without it now, or, whether a return to maybe a lower dose might be suitable.

    One of the things that I bought when I stopped the HRT last time were rather expensive p.j's that take the persperation away from your body when you perspire at night. So although it does not reduce the amount you perspire during the 'flushes' you at least stay dry. They are not at all stylish and you wouldn't want to be seen at a party in them lol .... but they work !!!! The label says 'Wild Bleu'. I cant remember if that is the make or not, but I know that I bought then on-line. They can be machine washed but must not be rinsed in fabric conditioner.

    I am now retired, whereas I was trying to run a home and work full time (shifts) during my previous attempt at stopping, so maybe this time will be OK !!??

    I wish you well with coming off the Tibolone and hope it works for you.

    x 

    • amanda2501
      amanda2501 christine20477

      Posted

      Hi christine20477

      The PJ's sound good, I'm not having a good time on the injections or my tablets I've found out now it's not working and that I may need a hysterectomy. At the moment im in hospital because I'm in so much

      Pain. I just wished they did that at the beginning.

      Yours amanda

  • amanda2501
    amanda2501 paula08283

    Posted

    Hi Paula08283

    I'm not having a good time on the injections or my tablets I've found out now it's not working and that I may need a hysterectomy. At the moment im in hospital because I'm in so much

    Pain. I just wished they did that at the

    beginning. Paula as far as I no you have to wean yourself of them and it can be horrible.so please ask your doctors first.

    Yours amanda

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