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Tibulone withdrawal

Posted , 21 users are following.

Old_NIck_1
Old_NIck_1

At 60 I thought it was about time I came off Tibulone (Boltin)after 7 years. It has been 3 months now and I am seriously considering taking it again. I have awful hot flushes, insomnia and just don't feel so well without it. Both my hip joints have started being really stiff and painful since I stopped taking it. I did put on some weight but had no other side effects it was wonderful. Weighing up quality of life against the risks makes me think it's worth taking. Anyone else had experience of withdrawal, how long does this misery go on for?

1 like, 29 replies

29 Replies

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  • lynnspain
    lynnspain Old_NIck_1

    Posted

    Hi I too have been advised to come off Tibulone after 8 years. Omg i feel awful already after just 3 weeks. i have weened off it slowly but the symptoms are coming back, hot flushes constand headaches and not sleeping. and now have got vitamin defficiencies. I am seriously thinking of going back on it again my energy levels are so low. Am going back to  dr next week hopefull for a  new prescription. good luck with your progress Old nick1.
    • Old_NIck_1
      Old_NIck_1 lynnspain

      Posted

      I was off it for nearly a year, I couldn't stand it any more and the symptoms weren't getting any better so I had a long discussion with my doctor and was told that some people like me need to be on it for life and the improvement in my quality of life were worth the risks. I am now happily back on the medicine and intend to stay on it.

    • lynnspain
      lynnspain Old_NIck_1

      Posted

      did yuo feel light headed and just a bit muzzy headed all the time ?

       

  • shirley27926
    shirley27926 Old_NIck_1

    Posted

    I have been taking Tibilone for years. I have tried coming off it and went back to the hot flushes, not sleeping and my skin went crepey quite quickly. The aches and pains came back in abundance.

    i have gone back to it.

    My Dr makes me feel guilty that I want to continue taking it, so now I buy it myself over the counter in Portugal. I just take a double dose of Glucosomine for my knees. That has saved me from a partial knee replacement...now walk twice a day with my dogs.   Feel healthy and happy after a good nights sleep.

    i am 65 years old

  • tracey91100
    tracey91100 Old_NIck_1

    Posted

    Hi old Nick, I am 45 years old. I was put on livial aged 33 due to my hysterectomy and ovary removal due to severe endometriosis. I came off livial (tibolone) 2 months ago, I came off very gradually and luckily I have had very few hot flushe. My foggy head & blurred vision has stopped and I feel good. The only issue I have is 3 months ago I started with severe joint pain in my fingers, wrists, feet, toes and knees. I have very swollen fingers & feet. My GP did blood tests which showed raised inflamation markers and RF factor so referred me to a rheumatologist as he suspected Rheumatoid Arthritis. My rheumatologist has ran many different blood tests that have all come back normal, as have ultra sound scans on my hands. She wrote to me today to say she does not think I have inflammatory arthritis & will not be seeing me again. I am in so much pain in my joints. I am now thinking what is causing it? My GP was certain it was RA. After reading this thread I am now wondering if I am suffering some kind of side affect, after coming off Tibolone? I'd be very interested to know how many ladies have had excruciating joint pain & swelling after coming off it. Other than the joint pain I feel so much better off Tibolone.

    • Old_NIck_1
      Old_NIck_1 tracey91100

      Posted

      That sounds terrible, poor you, so young as well. In answer to your question no I didn't have the sort of pain you describe, I did get arthritis- type pain in my hips and parts of my hands, but not severe. The pains did go when I went back on the treatment however so maybe a link is worth investigating.  Hope others can shed more light and I do hope you get to the bottom of it and are pain free very soon. 

    • sue10531
      sue10531 tracey91100

      Posted

      Hi just read your post I have been taking tibolone for 25 yrs with no problems 1 month ago my doc took me off them cold turkey! I was taking it due to total hysterectomy at 25 yrs of age due to endometriosis . My life now is awful moods, joint pain , hot sweats are awful, depression and lethargy to name a few patience is at stretching point in our house ! Can u let me know pls how you are getting on ? Much appreciated regards sue
    • Old_NIck_1
      Old_NIck_1 sue10531

      Posted

      Oh Sue that sounds dreadful, maybe it would have been easier to come off them slowly if you really had to.  I am still taking mine no side effects that I know of and I don't think I'll be stopping them, the year I spent without was such misery. I do hope you feel better soon. Black cohosh helps a lot of people I know but sadly it didn't do much for me and I am a great fan of the herbal remedies. Don't suffer in silence talk to your doc again or see a different one! I do wish  you all the best.

    • jenny73393
      jenny73393 sue10531

      Posted

      Hi Sue, I feel for you as I tried to stop and suffered a return of the nasty symptoms !  I am now back on Livial and life is great again. Do not suffer . 

      If your doctor will not listen than find another.

      i am lucky my doctor listened and readily re prescribed. He agreed that recent research. Is not conclusive of the harmful effects previously reported. He referred me to the Jean Hailes website for further  information.

      i am loving life again. I will soon be 65.

      jenny

    • nairobijo
      nairobijo sue10531

      Posted

      Hi. I'm just wondering how you are getting on as I have been told to slowly decrease my dose and then come off Livial entirely. I am now on alternate days and I feel terrible (have been doing this slowly since Christmas).  Hot sweats back, lethargy, feeling very low, headaches, blurred vision and joint pain in my fingers.  I have been on Livial for 3 years and my Dr doesn't want me to be on it long term because I have done a number of IVF treatments which obviously involves a lot of hormones.  I am 52 and can't imagine feeling like this long term. Thanks for your help.

  • eckyblonde
    eckyblonde Old_NIck_1

    Posted

    why come off it I am nearly 63 and have been taking hrt since I was 41 have been on tibulone for a month and the results are very good  I intend to stay on hrt as long as possible it is an informed choice 
  • Guest
    Guest Old_NIck_1

    Posted

    I'm 59 and happily been on Tibolone for about 6 years. I've just noticed spots of blood (not fresh looking). Should I be worried? I'm worried if I go to the doctor she'll take me off it and I have just started a really high energy job. I just couldn't do it with nasty symptoms. Should I wait and see what happens? Advice much appreciated!

    • jenny73393
      jenny73393 Guest

      Posted

      Hi Grace, I would suggest just wait and see. If bleeding persists then follow up. make sure you are taking tablets roughly at same time each day so levels are not dropping erratically .

      goodluck and I am sure all will settle as the benefits far outweigh some little inconvenience. In my opinion.

      regards Jenny

  • nicola71665
    nicola71665 Old_NIck_1

    Posted

    I was so pleased to have fiund this discussion group!  I am 65 and have been in Livial for about 11 years. I used to have terrible night sweats and hot flushes in the day - so emarassing at work when I started going red as a tomato. Livial put a stop to all that really quickly and I have been fine. I have specific blood tests and mamogramme + echosound once a year which are prescibed by my gynaecologist. She now suggests that I reduce to half a tablet which I keep putting off.  I think I am one of those women who will be taking it in her 80's. 

    I have hip pain but this is due to arthritis - also in hands. I do seem to suffer from candida and cystitis fairly frequently - I wonder if it is due to Livial?  Now I have dry eyes and blepharitis. Does anyone else have same problem?

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