1. Community
  2. Women's health
  3. Menopause

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

Next
  • tracy12090
    tracy12090 karen96338

    Posted

    Hi, Karen I totally agree I tried weaning myself off the Tibolone by taking half a tablet a day. Within a week my atrophy had started getting worse again once I resumed they declined immediately. As much as I'm not a fan of medication I realise that my body needs it. My Dr has said I will need hrt longterm also after the same reaction reducing Vagifem at least she's on board unlike some Dr's.

    For anyone considering the Mona Lisa laser treatment. I also discussed this with my Dr recently. Although she's not up-to-date with all the details she said in theory it sounds good. But as I have overhealing ( keloid) she would be concerned about scarring in my case from the laser.

    Hoping they find some alternative in the future with less risks for us all :-)

    • karen96338
      karen96338 tracy12090

      Posted

      Absolutely tracey, I am a fan of Tibolone, it makes me live life, and I am fortunate that my GP agree's I couldn't bear it if I did not have it, I will be taking it for life, i read on one site although I can't remember which one that a Lady was 78 years old and had been taking it for 28 years and was more energetic, agile and still worked, and also looked years younger than any of her friends who she said could hardly walk and were in pain most days, to me it's a no brainer keep taking it!!!! Take care and keep in touch x
  • barbara92906
    barbara92906 karen96338

    Posted

    Hello karen..that is interesting...i started this on tibolene over a year and a half ago...wonder what age you are...i am older!...the same as you,  and i was told i could stay on them for the rest of my life,if i found them beneficial.....the benefits far outway the supposed risks...is exactly what a senior lady professor consultant told me a few years back...and as i have said this last year, i find she has returied, and i cannot get hold of her..i have written to where she is connected to....no answer...all the hospital doctors etc...say, is she has retired...i have part of a letter which she had written, but it is not enoughh proof, and they would not listen now anyway...i wrote worldwide, to livial addresses in the packet...no joy...mostly they say, in each country, there are different regulations..i hope yoiu understand this...and karen, i just hope you can keep on them...18 months or so ago...i HAD TO COME OFF THE...spring 2014...gradually throughout the summer if felt worse, and the heat made it worse...and so it went on, and now i am in a pretty desperaste state...i feel i haveall the symptoms of multiple sclerosis...i am not putting this on...i really am trying to cope,. but as an ex secretary who had my own office in tow, and my own business...i can be my own secretary,order myown medication...get myown meals...have my groceries delivered every4-5 weeks, and stock up, and i am disabled, and elderly...looking back yoiu can see my age..i am now battling with symptoms of M.S.....but all i am told is that i am old, and over ??...i dont mind you knowing my age one bit....but i wonder what age you are...and what country...i think they are easy to buy, but expensive, in australia...this is u.k. where i am..!!  take care...more later...keep talking...so many doctors have different opinions....wonder why...i certainly have got worse, and with livial, look at the instructions leaflet, it does say they are good for bones to....but no one will listen to that, medical people i mean.Barb.
    • karen96338
      karen96338 barbara92906

      Posted

      Hi barbara,

      I am in the UK and I am 55 years old 56 in january, i will keep taking them I have spoken this morning with my GP and he agree's that i can keep taking them I have tried twice to come off on both occasions i felt awful, so i am taking my own advice it works for me and that's all I need to know, i hope that you are happy, like you  will take them for life why suffer when you don't have to? it is sad to hear that Doctor's do not listen to Women menopause for some can be debilitating whilst other's sail through it, for me I am not in the latter group, i wish!! so I am blowing sunshine on the Tibolone drug for me as I said before it is 2mg of heaven.

    • tracy12090
      tracy12090 karen96338

      Posted

      I am an unlucky sufferer too as none of my family members have VA. My mother has some problems and she has been taking a low dose of Hrt for 35 years with no side effects or health problems. So I guess like anything it's upto the individual to decide what's best.

      If it improves my quality of life then I'm all for it. There are many medical conditions we will secumb to regardless of the hrt.

      I feel for you Barbara, it must be hard enough without menopausal symptoms x

    • barbara92906
      barbara92906 karen96338

      Posted

      thanks karen and tracy..kind words, thanks....i was on livial for quite a few years...wait until 80!!...yes, that is the age now...i was fine on the livial throughout my 70s, and before that,although different doctors tried to get me off, and i said no...so they left me alone, but they said i would have to come off sometime!.,..that is not what a nice professor consultant said to me, and i kept her words in my head...hence she retired, no one would listen to me..hey ho..i must stop moaning, but i am feeling so very strong about it, especially as i am now...people say i look well, and happy...but i do suddenly get tired and fatigue...just have to sleep...how lucky for me, people say!...if only they knew!!  what i have now is ironic...perhaps i have had some of it for years, but i dont complain...now it is everything, of the symptoms i mentioned...and i have had so many with MS who are sympathising with me, and saying "it is not good to live with"....perhaps i havent got it...but by gummy i've got something!!!! hehe...my partner is nearly 69....amazing...but lost it now, and him to...but we carry on....livial isnot just for hrt,but for bones to, i am sure and convinced of that...byeeeee for now...must get on, i write too much!!.!!..barbie..

       

  • barbara92906
    barbara92906 karen96338

    Posted

    that's so good...i was on livial must be over 20 years, and i was energetic in my way, was never a sports person, but an office person....i am still energetic now in my way, but so slow....probably old age, as doctors say, and others, well you are 80, they say, and old!...nice eh...but i organise my own parties, i did when 80, a celebration..i did it all, from my office hre, e mails and phone calls...but it caught up with me on the day, i had been without livial about 8 months, and getting so many other symptoms, as i said...and some of the symptoms have now changed...i almost felt i knew back in april 2014, that if i came off,  it would not be well...but what could i do...wish i had a doctor that agreed i could stay on it forever...like the professor lady said to me once....hey ho!! keep smiling..i want to rush out in the sunshine, and be happy...,i cant go out the front door or the garden, without feeling i am going to fallover...and my balance is terrible...and i hate the suh and brightness in my eyes..i just cant go out...so i will stop moaning now..perhaps i should put cliff richard on and play CONGRATULATIONS or something, and try to dance like i used to..haha.have a good weekend girls.xx.B.
    • tracy12090
      tracy12090 barbara92906

      Posted

      Hi Barbie you sound like your keeping your spirits up good on you. My mum is 76 and still likes to shake a leg if she can. I hope I will be the same when I get there too.

      Have a lovely weekend x

    • karen96338
      karen96338 barbara92906

      Posted

      Have a great weekend Girls and shake anything you can even if its a baby rattle!!! lots of love and happiness to you all x
    • barbara92906
      barbara92906

      Posted

      thanks georgina..i am stil here girls by the wawy...i iunderstand, i was on livial for years...now 81 nearly...doctors think yoiu should come off it when old....in case of heart or stroke...one consultant, a lovely lady, mature, and understood, years ago, said i could stay on it for life, if i wanted..she retired, no one would listen to her comments, and i cannokt find her anymore..i work hard on trying to owork things out, as an ex secretary, with my own business, for over 50 years....without livial, i have gone down hill, from that moment, spring last year, over 18 months, so much has happened to me..honest, unbelievalble, doctors take no notice, i am old...it has affected my partner and my life...i am not deprssed, but doctor says I AM, RE OTHER THINGS...i am ttrying to sort out, as i am sure i have MULTIPLE SCLEROSIS...as i have all the symptoms...i may be wrong, dont care, if i am wrong...i working on i t..but doc. says i am depresssed, doesnt matter if i am not, tell the psycho. i am depresed..!! huh!!....must go..got to much to do, and care fof myself a lot..could write a book...take care girls...bit late for me to go back on it..but we will see. love from me. barbie..!! take care.

       

  • georgina88796
    georgina88796 karen96338

    Posted

    Dear Karen:  Hi there, yes that was nice to read, am happy you went

    ahead and got back on Livial.  I have now been off of Livial, after being

    on for about 15 years on and off..........slowly have gone off, got a headache

    upon reducing my dose but still persisted on a slowly with drawal thru

    almost 2 and a half months and now I have been cold turkey for the last

    2 weeks.  I have noticed that my skin is much drier, much much so.......

    my eyeballs are drier too and I don't think I am depressed, as I am sure

    to take Fish Oil and COQ10......and all my other vitamins........but I do not

    feel the same........it is not the old me.............as I live in the States, you

    can not buy it here, but my next best bet is to buy something to try and

    replace it at the health food store..........if this does not go well I will try

    and ask my girlfriends who go abroad to pick it up for me and bring me

    back a 6 months stash which if I only take half a pill a day will last me

    1 year.  I am not a happy camper right now, but will wait and see what

    happens to me in 1 months time.  Tks. for your input.  I guess my body

    really got use to taking for 15 years.  I am very healthy so far, no aches

    or pains.....oh yes..........I have less facial hair on my jawbone.......as I 

    am turning into a prune.....heh.....heh......

    • karen96338
      karen96338 georgina88796

      Posted

      Oh Georgina, poor you, I would go straight for the girlfriend route if I were you and do what I do about the facial hair get waxed!!!! worth the discomfort for the long term effects of HRT I hope you get a supply soon my advice would be, don't suffer if you don't have to?? Take care of yourself and keep in touch x
    • georgina88796
      georgina88796 karen96338

      Posted

      You have made me giggle, I really don't have that much facial

      hair, nothing I can't pluck out daily.........but what I meant to say

      was that now without the Livial I have less........maybe that is 

      what I should had of done before, have it waxed.........although

      I know it is painful.  I have to wait a while for my girlfriends to

      bring me a supply of Livial, ................do you live in England?

      And what would one do in the way of health food store supplies

      to keep ones skin more moist, I am reading up on that and there

      are so many herbs that I do not know which one to choose.....

      plus they say soy protein.........but we get enough soy anyways

      in our daily diet.......without wanting to that is.........oh well..........

      I will just sit this one out and observe what happens without the

      Livial...........and just remind myself that soon in a few months time

      I can get my supply.  Take care..........and thanks for replying.

      All the Best.......G

    • karen96338
      karen96338 georgina88796

      Posted

      Hi Georgina, I always use coconut oil for my skin, and I mix a few drops of frankinsense into a pot of massahe cream and as if by magic your skin will not feel dry its brilliant and cheap! read up on coconut oil and cream you can use it for so many things.let me know how you get on, I eat quite a bit of soya Alpro soya is the brand here UK its 100% oestregen so its well worth adding it to your diet it comes in yoghurts,and milk so i have some everyday good for us menopause girls and they say (whoever they are!) that red clover and clary sage are for hot flushes I dont actually get those so maybe its because of the soya?? worth a try xx 
    • karen96338
      karen96338

      Posted

      should be massage cream!
    • georgina88796
      georgina88796 karen96338

      Posted

      Karen, thankyou for your pointers on how to keep ones skin

      moist.  I will look for coconut oil and cream in the pharmacies

      here in the States.  I will also look for Alpro Soya.  I drink a Soya

      cream everyday in my cup of tea......but that is only 2 or 4 tablespoons of soya cream.......I don't have hot flashes, too old

      for that, ................I have been reading up last night on menopause

      and the pros and cons of taking HRT..........I was so in love with

      Livial that I never read any of that..............so it seems that I am 

      doing my heart and other parts of my body a favor as they say

      HRT can cause some cancers........( I don't believe that.......but

      that is what they say)  The pro is that if you take Livial is that you

      are protected against colon cancer and your skin is softer and you

      age slower physically (skin and wrinkle wise) and it protects you

      against some other kind of cancer and of course is great for your

      bones........anyways...........I am trying to humor myself and convince

      myself that I have done the right thing by going off of it..........I am

      a little stubborn..........but I am going to take you advice and try

      coconut oil, I had heard that it was good for cooking and salads??

      I think Barbara is right , it would be great fun to meet someplace

      and be able to discuss this all in person..........am off to bed, it is

      now 11:15 p.m. and if it is cold and rainey in England it is here

      too........fall is coming and I am not accustomed to the cold weather!!

      Good night to all. xo G

    • barbara92906
      barbara92906 georgina88796

      Posted

      hi georgina..you have come off livial then, and are older..i am oldler, i think older than you!!  i bet..i still get hot flushes, and cold spells..today i have..i had to come off livial...but i know it was good for bones, doctors and consultants, just took me off, regardless of my osteoarthritisy, and other stuff...temporal artritis, ..that is swelling of arteries in the head, had that four years now..ahd polymyalgia..and so on...i am full of it...i have the symptoms as i said of MS....but alas i cant tell the doctors their job..i have had to come off hrt livial....and now much worse every since, 18 months ago...i still look good, once i have washed and done my self up, i am told..and as for meeting up, a good idea...but i could not do it now...cant get out the front door without help...and a wheelchair!!....so i must not moan anymore....i just wish i had not had to come off livial...perhaps i am wrong..who's to say...i just have to do what the docs say...i now have lots more to say to my doc. this week, not enough time to tell her what i want, ten mins. and she rushes you out the door..so i hae written again, and to my heart nurse...doctors forbid me to write to them....and tell me i dont hafe the symptoms of MS....haha...will they ever listen...i now have gone deaf in one ear and yesterday, the other ear...so no TV or radio for me..can all this really be happening to her they say?...YEP and much morel..failing eyesight, and blurred etc.look up MS...!! ta ta for now, must get washed, but good to sit here and rest and type...typing is my profession!!..have a good day.B.
    • georgina88796
      georgina88796 barbara92906

      Posted

      Barbara, Hi there, I am 69 going on 70 and last night I started

      reading up on HRT, so........I see that Livial protects you from

      colon cancer, and some other cancer and keeps your bones

      in good shape and skin and protects you against wrinkles....

      but.......it is not good for your heart, nor other cancers like breast,

      etc, etc.....but what upset me was they said that HRT treatment

      one had a bigger possibility of getting alzheimers and dementia.

      So I am still researching on that one, before I decide if I will go

      back on Livial in the next 5 or 6 months.  I don't have hot flashes

      anymore......But yes, I think you must speak to your doctor and

      tell them about coming down hill once you stopped taking Livial,

      and telling her that you need to speak to her longer than 10

      minutes.........write down all your questions and end it with saying

      you want to be put back on Livial, that right now you are not feeling

      quite that well and why can't they write you a prescription for Livial?

      With the little I have read on your emails, I know you have the

      gumpshin (spelling?) to do that!!!  You are "Worth It Barbara"!!!

      Lots of Love. G  Hope all goes well with your doctor reunion!!

    • barbara92906
      barbara92906 georgina88796

      Posted

      you are kind georgina..kind words coming from this site...i cant telll my doctor anymore, i have tried, the lady doctor, that i wanted to ber put on to, when talking about this sort of things..she only part time...the man doctor , just the same would not liste...STOP LIVIAL!!.seems a bit late now to start, but i KNOW THEY WILL NOT PRESCRIBE IT ANYMORE..they made it clear..the only person i s the consultant i isaw a few years ago...she retired..dont knokw how to contact her anymore...strange life...i am reallyk battling with other things at the moment...with water tablets, steroids, oramorph - morphine medication..pain killers - 8 a day...and other things, a long list...being a secretary all my life, i keep tabs on it...and like cooking, kand mince my food, but still feed my partner wityh dinners, i lioke doing it, gets tiring at times...he does some drying up after i washed up..often washes up...but moans about jobs to do..he is retired at 68!!..haha...then other stories..i could write a book. off to bed now..i have wonderfuo ofriends kept over my life...grandchildren, five of them, gone off univ. then one married, and others travel, one in ausie again, and new zealand, india, and vietnam....not sure why they want to go there..anyway, i am getting off the subject, haha..take care, keep smiling.monday tomorrow, well it is now..i like mondays, always have done..!! do my own work..B.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.