Livial/Tibolone Beware

Posted , 7 users are following.

I am 53yrs old and was precribed Tibolone in January this year unfortunately this coincided with me going into full time work involving 2hrs travel per day. Since January I have felt more and more exhausted (even having to drop a days work to a four day week, and drop a days pay!!!) The aches and pains in my joints (particularly my knees and shoulders) have got worse, excruciating pain in my thighs and hips and I presume because of the constant pain I have become very depressed. Also swelling and pain in every joint in my fingers. My doctor has done all my bloods (normal) and then sent me to a rhuematologist who dignosed fybromyalgia. Life was hard and infact at times I thought I would be better off dead :-( Well...to get to my point approx a week ago on a Friday I realised I had run out of my Tibilone, I was a little worried but there was nothing I could do, I just had to wait until Monday to even put a script in at the Docs. By Sunday I realised the pain in my thighs and knees had eased a lot! by Monday my mood was so much better, I actually felt happy for the first time in months! I tried to think what was different? why has there been this change in my symptoms...I was looking at what Id eaten or not eaten then it dawned on me TIBOLONE!!!! I googled and got this sight and thank GOD I did. since I stopped this horror pill that Friday I have got better and better and feel I have a life again. I dont think I have Fybromyalgia I feel the side effects of Tibolone mimic the symptoms of Fybro. I know this HRT has worked for some but there are an awful lot on here that have had similar dreadful side effects so please anyone that is considering taking it just be mindful of how dibilitating the side effects can be. My hot flushes and insomnia were NOTHING compared to what I have been through..I will put up with them standing on my head than take any more HRT that could cause this again.

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12 Replies

  • Posted

    hi,

    i know this is an old tread, but would still like to know what you did? i am 49 and removed my ovaries 2 months back, doctor has suggested livial, but i have yet to take it.

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  • Posted

    I was getting a little relief from hot flushes and more sleep but hadn't realised that my arthritic hands were so painful because of the medication until I stopped it!   I have now been diagnosed with endometrial carcinoma stage one Have to have a total abdominal hysterectomy. Hopefully lymph nodes will be clear so won't need further treatment.  I wonder if Livial is to blame?
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  • Posted

    I had very similar issues, but I lasted only 6 weeks before giving up in disgust.  I guess tibolone is good for some but definitely not for me.
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  • Posted

    Hi there, I started taking tibolone 3 weeks ago, and am wondering if my muscle aches,  stiffness and low mood are related to this medicine. Prior to that I was using oestrogen patches for 2 months and I felt great (except for low libido, which is why I switched to tibolone).

    So far on tibolone...

    - hot flushes mostly gone

    - no improvement in libido

    - significant back, hip and thigh stiffness and pain (I was wondering if I had fibromyalgia)

    - low mood and loss of interest in things - not quite depression but it's going in that direction. 

    I'll keep going for another week or two with tibolone and may consider stopping if these new symptoms continue. 

    Anyone else experienced similar?

    Shelley

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    • Posted

      I have never felt so much pain, put on so much wait, bloated and nauseous ... and only a day or two after I stopped taking tibolone I felt really well, no aches, pains, headaches ..  hmmm
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    • Posted

      No I didn't persevere, stopped the tibolone after 4 weeks. I'm pretty sure it was responsible for significant worsening of my neck/back pain, and definitely for my low mood and disinterest in things - bordering on depression. These both improved within days of stopping.

      Now back on the oestrogen patches, which are great for the hot flushes, my mood is back to normal and minimal musculoskeletal pain. Libido still non-existent though :-(.

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  • Posted

    Hi Guest

    I am 68 yrs old and have been put onto Tibolone which I have used for almost 2 months now and am still experiencing extreme back ache stiffness and swollen painful fingers. I also felt bouts of anxiety so have decided to stop and see if there will be an improvement in my symptoms. These dreadful symptoms have fully cost me dearly as I cannot continue doing my care work. I have told my Dr about these

    symptoms but she feels I must continue. I find it so difficult that professional medical

    people doubt what one tells them about what is experienced in ones own body. They

    have a dilemma as we are all individual and need individually suitable HRT treatment

    and we could help guide them from what we experience.

    wishing you all the best

     

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    • Posted

      My advice would be to ensure smear test up to date. My hands are so much better sine I stopped taking Livial.  I still need to get help with the damned hot flushes as I don't get enough sleep.  Is will see my Gyny once I am recovered from the hysterectomy.
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  • Posted

    We have so much in common it's unreal.  I too am 53 and my job moved to the City (I live in Melbourne) so I went from a half hour drive to a drive to the train station, I came to the city and then tram to the office. To do this I get up at 5am every morning which is not realy hard for me because I am very much a morning person. But because of the hot flushes I rarely get more than two hours sleep at one time so I never get that really deep sleep. I have arthritis in my hands which doesn't really give me too much trouble other than they look 20 yrs older than me but after five months on Livial I was thinking that I was going to be disabled as far as my right hand was concerned.  I too had unexplained pains throughout my body my knees. The flushes however had started to calm down a little and sleep, maybe a little bit more solid but not enough to make me feel well. Then I started with some light bleeding, to cut a long story short I was sent to a gynaecologist had a D&C & polyp removed then sent to an oncologist and have just had a full hysterectomy because I had a tumour in my uterus. My smear's are up-to-date I get one every two years and the same with a monogram. My advice to anyone thinking of using Livial is to have a smear test, make sure there is nothing nasty there because what Livial will do is feed it.  
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