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Tibolone Side Effects Help Please!!!

Posted , 17 users are following.

helen30020
helen30020

Hi im 48 and on day 11 of Tibolone and for the last 2 days i've been having side effects and would love to hear if these eventually go away...Fuzzy head, headache at the back of my head, leg pains esp at night and also broken sleep - i keep waking up about 5 times during the night sad  at first i was fine up until day 9..

I really want these to work (after feeling rubbish on Ellest Duet) 

Also it would be nice to know how long it takes to help the Libedo kick in??( Lol hubby keeps asking !!!)

Any help would be great, just need a bit of hope !! xxx

0 likes, 37 replies

37 Replies

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  • Rhino2015
    Rhino2015 helen30020

    Posted

    Hi Helen - looking back - thinking I was a bit fuzzy - but was so happy other issues had vanished was not too concerned - I was Lso using Ovestin cream so libido was back to teenage years - have since stopped that due to some irritation and libido has diminished - damnsmile Hang in there - it all takes time for your body to adjust to these foreign but amazing newcomers in our bodies smile
    • helen30020
      helen30020 Rhino2015

      Posted

      Aw thanks for your reply x Where do i get the Ovestin cream from? wink
    • karen96338
      karen96338 helen30020

      Posted

      Hi Helen,

      I have been taking tibolone for nearly 8 years now and they are without a doubt my life saver, I felt hoirrendous without them, I have tried to come off them a couple of times but after speaking with my Doctor he said stay on them, I do remember in the beginning that I suffered terrible headaches, and restless at night, but hang in there they will pass and yes your libido does come back I will take them for life why suffer when you dont have to! Good Luck and keep taking them they will make a huge difference to how you feel xx   

    • Rhino2015
      Rhino2015 helen30020

      Posted

      He he - yes that good - ask your Doctor about it next time you are there - think I will give it another go and persist a little longer.
  • georgina88796
    georgina88796 helen30020

    Posted

    Dear Helen, I have been using for 15 years, can't remember when libido

    kicked in, but everyone I know has remarked on that it has greatly helped

    their libido, so I suggest you sit back and chill and it will happen sometime,

    sorry I can not remember when, but it will.  I know my reply is not much

    help........only a promise that it will, just be calm. G

    • helen30020
      helen30020 georgina88796

      Posted

      Hi Georgina, Thank you for your reply x Its lovely to hear positive replys about Tibolone...i will stick with it and let you know in a couple more weeks how im getting on.

      Thanks again ladies xxx 

    • georgina88796
      georgina88796 helen30020

      Posted

      I am happy to hear that you will stick to it.  I have been off of it for

      4 months now as I am 70 and I am so sad........as I can really tell

      the difference by not taking it, (libido wise) so don't give up Helen,

      you will see a difference I promise!!! G

    • helen30020
      helen30020 georgina88796

      Posted

      OH Noo thats awful to take you off it , surley they will be able to replace with something else maybe !

      A friend of mine (64) gets her HRT from the states as doc here won't perscribe it because of her age!!

      Good Luck hun xx

    • georgina88796
      georgina88796 helen30020

      Posted

      No, I don't think so, I just went off of it, because my doc in

      Central America told me it was time to come off, and low and

      behold I was diagnosed with breast cancer, so I am going thru

      that right now, I am in the States now.  But I have found something

      very curious in my research......I found a study that said:  to fight

      breast cancer in older women, specificly invasive breast cancer

      that they used 2 cancer type chemo pills plus Tibolone.......now that

      is a first.........??? So I am going to ask my oncologist if I can go

      back on Livial when I do my chemo.........the study also said that

      tibolone is a kind of steriod??? Anyways, if anybody is interested

      in knowing what oncologist says about that let me know so I can

      rely what she said.  As I am in the States now, Livial is not 

      available, but I am sure my girlfriends can bring it back to me

      everytime they travel.  I hope Helen that you are lucky with Livial,

      pls give it a try......the only side effects I had was an itchy scalp,

      and I could live with that, because the pros were so so good.....

      keep me posted.  Tks. G

    • freda88
      freda88 georgina88796

      Posted

      Hello Georgina, I'm new to this and haven't started taking Livial yet as l have concerns about the dangerous side effects. l am sorry to hear of your breast cancer and this concerns me as possible side effect since l have a history of breast cancer in my family. Has your condition been linked to the Livial what are your doctors saying? I would love your advice whenever you can and thank you in advance.

  • jennifer22182
    jennifer22182 helen30020

    Posted

    Hi Helen, It was so long ago I first took Livial, my doctor said it should kick in rather instantly and it did..  All I know it was the best thing for me.  I can say I had no problems at all taking it. I don't know if my high blood pressure was due to taking Livial, how does anyone know that.   I am now 70 and have recently gone off it.  I went off it quite quickly for no reason except I thought at 70 I should. I still feel great. I think Livial is a youth drug, psychogolically I felt young and I thought my skin was good and I hardly had any mood swings.  But of course it may not suit everybody.....  I  had a few hot flushes, when I went off it but they have abated, I have had a few lows, but that maybe due to aging.  Whilst I was on Livial I went onto Vagifem in the latter years, my female doctor prescribed for me.  It is also a hormone which assists in dry vagina. It is a small pessary that you insert into the vagina  I  still take that  once a week and have no side effects. Has anybody had breast cancer  whilst they have been on Livial, because that was often mentioned as a deterrent.  I think we would have heard a connection if that is the case.   Good luck Helen.
    • georgina88796
      georgina88796 jennifer22182

      Posted

      Jennifer, Hi there, you asked if anybody has had breast cancer??  Well, I just got it, right after I went off my Livial which

      I have been on for 15 years......as I mentioned to Helen, I started

      researching and found in Wikipedia, way, way, below, after

      scrolling lots and lots a study that uses Tibolone with 2 types

      of cancer chemo pill to "combate" invasive breast cancer" now

      that is a first.......first time I have heard that , which of course I

      will ask my oncologist when I see her what she knows about

      that, but unfortunately here in the U.S.A. they do not prescribe

      Livial, so she may not know much about it.......but that it has

      been used to combate invasive breast cancer??? Well.....we

      will see, I guess you have to be open to everything you read,

      and maybe it is not true, but if anybody has heard about this

      please let me know.  As to side effects.....only itchy scalp when

      I first started and all the way up until I stopped.....but I did not

      care.......the pros were outstanding.  If you have heard anything

      about Livial and breast cancer let me know. Tks. G

    • jennifer22182
      jennifer22182 georgina88796

      Posted

      I am very sorry you have been diagonised with breast cancer.  With all the modern pills around and I take 3 every day, it is hard to know what goes on in the body.  I am very much in favour of prevention and that is why I take the pills I am on now.  One can only trust what the doctor's prescribe.  There was something about Livial I recall my Doctor told me years ago.  She felt it was very safe  and it was synthetic HRT.  I think the original HRT was from female horse's urine.  Sounds dreadful....  Please don't quote me as I can't remember exactly.  All my best wishes to you and everyone on this forum.

       

    • wendy85114
      wendy85114 jennifer22182

      Posted

      Hello Jennifer and Helen

      I am over 70 and have been taking LIVIAL for over 20 years  half tablet I have been diagnosed with breast cancer 2 days ago--a shock because it is not in the family and I did think of livial hence my contact___ I am also interested if anyone else has been diagnosed with cancer  and taking LIVIAL  and over 70??? Wendy

    • georgina88796
      georgina88796 wendy85114

      Posted

      Dear Wendy, I am 70 and have been taking Livial for 15 years,

      stopped taking 4 months ago and was diagnosed with breast

      cancer 2months ago.  I too do not have breast cancer in the family,

      just your occasional cancer, grandparents who lived until 86.....

      Yes, it is quite disconcerning.  Have read about a study in 2009

      where they have given older women livial plus tamoxifen and

      raloxifen to "prevent" breast cancer in women......is your cancer

      estrogen feeding? Georgina

    • jennifer22182
      jennifer22182 wendy85114

      Posted

      Hello Wendy, I don't want be alarmed, obviously that is not good news about your cancer.  If there is a connection, you would think that Livial would be under a great deal of scrutiny.   I am 70 and went off Livial last year.  I am feeling great and don't feel 70 (what ever that means) at all.  Exercise and healthy eating should be on everybody's daily regime.   All the very best Wendy and Georgina, thank you for sharing.
    • wendy85114
      wendy85114 jennifer22182

      Posted

      thank you Jennifer  I agree I think " LIVIAL" helps moods how you look quality of life  etc., --  if it is cancer related it should have been mentioned with the other  Hormone replacement therapies  thank you  Wendy
    • wendy85114
      wendy85114 georgina88796

      Posted

      not sure about the estrogen feeding  I feel great actually so that makes it more of a surprise -- a friend suggested "Stress" related  -- good to share information   and I shall keep reading this forum  Wendy

       

    • georgina88796
      georgina88796 wendy85114

      Posted

      Wendy:  I too feel great, you can't feel breast cancer.  Will you be

      operated on?  I think that stress has a lot to do with it, and the

      docs have all reassured me that Livial had nothing to do with it.

      I had partial mastectomy and will start radiation soon...I so so

      wanted to go back to Livial but my cancer feeds on estrogen

      so I can't.  You probably don't know what type you have yet

      and what grade, etc as you have just found out 2 days ago.

      Thank God for this forum, ........it has helped me a lot.....G

    • georgina88796
      georgina88796 jennifer22182

      Posted

      Jennifer, yes, it is not good news about cancer, but today they have so much to offer and when you catch in time you are as

      good as new when you come out of treatment.  Exercise and

      healthy eating is also a Must Do!! Thankyou Jennifer, G  P.S.

      My doctors in 2 different places have said that Livial has not had

      anything to do with cancer.  Am just a little sad that I can not go

      back on as to me it was a wonder drug!!

    • wendy85114
      wendy85114 georgina88796

      Posted

      HI Georgina { my husband has many things wrong with him --chemo really knocked him around He is going to have DEEP BRAIN STIMULATION  for Parkinsons disease next month -- Coronary bi-pas last JULY on-going medication for prostate cancer?} so stress related could be the cause I am not a good carer   I agree this forum is great --a relief to read - amazing that we all feel OK -{ A young friend has " Meleonoma" and is on a TRIAL therapy -- she had no symptoms}, I am expecting an operation?  shall keep you posted  and thank you W
    • georgina88796
      georgina88796 wendy85114

      Posted

      Dear Wendy, hello there, it has been quite a while since I have

      written you and I wanted to know how your were feeling since

      you were diagnosed with cancer and what you were doing about

      it?  Did your doctors say it had to do with taking Livial and was

      your cancer "estrogen fed"?  I also see that you have a lot , but

      really a lot of problems and stress in your home, what with your

      husband who has parkinsons and had coronary bi-pass and meds

      for prostrate cancer.......my goodness girl, no wonder you have

      come down with cancer, ..........it is totally stress related.  Keep

      me in the know and let me know how you are doing, in the meantime my prayers are with you, and I send you much light!!

      Sincerely, G

    • wendy85114
      wendy85114 georgina88796

      Posted

      hello Georgina

      Thank you for your thoughts and interest in me - it is appreciated- The surgery was successful  and I started radiation therapy this am 16 or 20 days  and after this treatment Estrogen suppressant tablets  forever???? 

       The livial was mentioned and it was strongly indicated that I no longer take the livial --  my cancer was "estrogen fed" I thought the whole world was receiving too much estrogen males and females  no blame was attached to any one  shall let you know what is happening-- Please stay in touch  Wendy

       

    • georgina88796
      georgina88796 wendy85114

      Posted

      Dear Wendy, Hi there, okay, so you are doing about the same as

      I have.......16 days of radiation......the last 4 are probably what they

      call a booster......I did not get the booster.  You have to put cream

      on your breast 2 times a day or more to keep it moist, the cream

      that they say is the best one is Calendula, as it is good for sunburns so it is good for a radiated breast.  They will also give you special if you start itching or get blisters.......and I did not get

      any reactions , only now, about 1 month after radiation am a little

      more tired, and take more time to do my stuff......I have found that

      transadental mediation has helped enormously!!! As I now am calmer and able to do only what is necessary and don't get upset

      if I can not finish everything......they say if you get tired, just sleep

      if off...........now I am 1 month on the estrogen blocker called Anastrozole, and I am lucky because my bone density test was 

      very good, as it sucks the estrogen out of your body.......so far I

      have had no bone aches or pains, but my tummy is sensitive to

      food (slightly) and I am now very careful on drinking 8 full glasses

      of water and eating veggies and fruits in  order not to get constipated as they make you take lots of calcium with vitamin D

      for your bones......my hair seems thinner, so I am taking biotin 

      and collagen just to protect in case it starts to really get thinner and

      I am ahead of the game that way.........I also have been tested for my

      cognitive memory as they say you can get kind of fuzzy in your

      head.......and I am okay, am not in danger of getting dementia

      or alzheimers ( this is a joke, but not really a joke as my mother

      has dementia and I don't want to end up like that!!) They say 

      also that you have to exercise 5 times a week for 30 minutes in

      order to keep your bones strong.......so I do that too.........can't

      think of anything else, but let me know how you are doing and what are they recommending for you so we can exchange notes

      on what is going on.  All my best to you, Georgina

    • wendy85114
      wendy85114 georgina88796

      Posted

      I will keep all this info  Thank you Georgina-- and shall check for this cream  Calendula Shall let you know how I am Wx
    • georgina88796
      georgina88796 wendy85114

      Posted

      Wendy, Hi again, Calendula is sold at health food stores and people who get burned by the sun use it, it has calendula in it,

      you should get the lotion, not the cream or the gel as it slides on

      better on your "roasted breast" so to speak and will not hurt, I am

      sure that they have also made you buy sports bras without wiring

      underneath which fit tightly as your breast must be held close and

      near to your body so it does not swell up too much.......the best

      bras that I found were in Victoria Secret, ..............sports bra that is,

      and my arm and breast did not swell up, did they take out your

      nodes?  Did you have any with cancer in them?  I think not, as

      we both have the same time of days for radiation and that is for

      people with stage 1 cancer that was found in time and usually don't

      have their lymph nodes compromised.  Once you get over all of 

      the radiation we can compare notes on our "Estrogen Blocker"....

      as I am dearly afraid of drying up like a prune......one of the ladies

      on this forum recommended coconut oil, which is inexpensive and

      great for all those "dry spots" on our bodies.  I am looking now for

      some special cream for face and am researching hyaluronic acid,

      which everyone is raving about..........but it has a draw back.......

      if you live in a very very dry climate it suck the moisture in your

      skin deep down inside and ends up being a double edged implement doing more harm than good.  If you have any good 

      news on how to wrinkle proof ones face let me know.....I am a little

      dissappointed with the creams I bought with hyaluronic acid.

      Keep your chin up and we will be talking soon. All my best, G

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