Tibulone withdrawal

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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?

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  • Posted

    Hi, Ive been on Livial for 18 years and have just stopped taking it due to being nagged by the Practice nurse. I'm 57 and have now started with the most dreadful hot sweats, headaches and general feeling of unwell. The worrying thing for me is that I have read on a medical site that by taking the HRT you are just postponing the menopause and once you stop taking HRT you will start the menopause which can last for several years! I personally cant cope with these symptoms much longer and its only been around 3 weeks since i stopped taking Livial. Is it safe to start takiing it again I wonder? Anyone else restarted?
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  • Posted

    I couldn't cope with the symptoms above any longer and I was particularly worried about the painful hip joints as I am an active person and could see myself ending up hobbling about. I went to see my doctor to discuss going back on the Boltin (tibulona) I told him about the headaches, painful joints hot flushes sweats and insomnia and general feeling of being unwell. He said I should start taking it again as he felt the benefits for me outweighed the risks. As with any medicine you have to make a judgement as to whether any risk is worth it and for my quality of life I think it is. He said he thought all my symptoms would improve once back on the Boltin. I've been taking it again for a week now and, oh the relief! I immediately felt better and more energetic. I am sleeping better, the hip pains have almost gone and the hot flushes, though still there are much less frequent, I think it will take longer than a week to get rid of all the symptoms completely but the improvement in my health is so marked after only a week I can hardly believe it.

    I was off the Boltin for three months and the symptoms were getting worse not better, never again. After this experience I am going to kill anyone who suggests I stop taking it again!!!

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  • Posted

    I never experienced any ill effects from taking Tibolone for 14 years. I came off it last August as my doctor kept going on about the risks of breast cancer. I Iimmediately experienced hot flushes, sleepless nights, forgetfulness, and gained over a stone in weight at an alarming rate. I have been taking FX nutrition capsules to alleviate the hot flushes but i still have sleepless nights, sometimes having to get up 5 or 6 times to go to the toilet. What I hate most though is the sudden lack of skin tone I have. It's quite scary how quickly it's happened.
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  • Posted

    Have been talking to a German friend in her 70's who is still on the treatment. She tried to stop twice and had such horrendous syptoms both times her doctor in Germany has told her she may well need to take in into her 80's. Her friend who was with us has never had any menopausal problems to speak of. It seems some people suffer badly others don't it's the luck of the draw. After taking it again myself for over two weeks I think the improvement in my health is worth the risks involved. It seems doctors in Spain and Germany may be more sympathetic to those who are suffering badly and more willing to weigh up the risks rather than just nag people to stop taking it. ( My friend in her 70's looks amazing, great skin lots of energy.)
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  • Posted

    Well just after I wrote that I saw an item on Yahoo news and from UK Daily Telegraph that a new long term study has found that HRT protects the heart and does not cause an increase in breast cancer. It is a more extensive study than the one that caused the scare some years ago. Check it out!

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  • Posted

    Yes, i've read it too! I've printed it off to show my GP when I see him tomorrow. He kept on at me to come off it when I first joined the surgery 2 years ago because of the results of that trial published in 2002. I told him I'd read it and was aware of the risks and probably had more chance of developing bowel cancer because of my history.

    The problem with a lot of these 'randomised' studies is they can be biased depending on the researcher's focus of interest. Someone else can come along and look at it from a totally different angle and get a completely different outcome; happens all the time! Anyway, I took the decision myself to come off it last year because I knew that whenever I did, I was going go straight into the menopause because i had a total hysterectomy and BSO when I was 41 and thought better to get it over with sooner rather than later.

    I've since changed my mind!

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  • Posted

    Hi everyone. I have been on Tribolone/Livial since 2005 due to endometriosis, fibroids, ovarian cysts, blah, blah!! I had no menopause I was 46. Surgical hysterectomy, inc. ovaries removed. So, needed hormone replacement to protect bones, prevent menopause.

    However, I have always had pain I think from ahesions, caused by endometriois. It has started getting worse again.

    From 2005 i gained, weight, developed dark patches on neck, downey hair on face (slight), forgetfulness/so difficult to concentrate, hideous crepey skin on decollette (chest), sagging aging face, all within 2 years.

    Doctors not interested, they don't know. I don't make a fuss. Difficulty sleeping. No motivation to do anything. Pretty much dragging myself along for 7 years. And that's with Livial!!

    I am worried to keep taking it in case all this is caused by it and take a chance on what symptoms I might get. And I just read that Livial can cause endometriosis to get worse, possibly cancerous - I have it still in my abdomin??

    I think I still get some symptoms, irritated dry, vagina, night sweats, sometimes! Dry skin. My sister looks better than me and she is 7 years older. Never been on HRT herself.

    If it gets worse without it, I am seriously worried for my sanity.

    Anyone else similar to me?

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  • Posted

    Hi poor you! There are so many types of HRT, sounds like tibulona may not be the one for you. I tried several before I found one that did what I needed without the side effects. I would suggest you ask your Dr to see a specialist and try something different. Good luck!
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  • Posted

    Have been back on Tibulone for almost 2 months and feel like my normal self again. No hot flushes or sleepless nights , hip pain pretty much gone. So glad I decided to go back on it again.

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  • Posted

    Hello Old Nick 1

    The one thing Tribolone seems to have helped with is the hip pain. It never occured to me to go back to the doctors, but i think i should, feel like i have wasted 7 years feeling like a depressed old moany minnie.

    All the advice is be checked out once a year by GP, but they aren't interested - too busy!

    Thanks for the advice. Andi.

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  • Posted

    My gynaecologist put me on Livial for menopausal joint pain and mild hot flushes. I took it for three weeks and I felt like absolute hell!. I'm 54, and had been suffering from shoulder pains, neck pain, hip pain, finger joint pain. After taking about 15 Livial tablets the pains were worse than ever, so bad I was limping nearly all the time. I felt so exhausted I would fall asleep during the day.. and I felt very low - borderline depressed, weepy, anxious and not in control . I stopped taking Livial after the headaches started and a general feeling of not feeling myself. Before taking Livial I was taking an excellent quality Black Cohosh and this was really working. I should have stayed on it and given the Livial a miss. Cohosh eases my pains,my hot flushes, and tiredness. Needless to say I will never take Livial ever again, and am back on the Black Cohosh and also Red Clover, and feel so much better now.

    I suppose Livial works for some women but it was a disaster for me.

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  • Posted

    Jane3

    Wow, reading your post, so intersting, and so much like my experiences, including the finger joint pain. I am 53, and fall asleep around 8 pm most nights. Then difficult to sleep at night. So tired and depressed probably for obvious reasons. Why have I never thought to try something else for 7 years, I am cross with myself now. Although I have been several times to docs with a list of these things and been sent away with no suggestions. As if this was normal. I thought HRT gave you a new lease of life, so blamed myself.

    Although some post suggest these symptons happen without Livial. Quite confusing.

    Some times I wondered if I was taking a placebo sugar tablet?

    I have started reducing by one every other day. I will update on this experiment. Maybe try the Cohosh and Clover!

    Good luck and good health to all you ladies.

    Andi

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  • Posted

    Hi, I am in my second week taking Tribolone/Livial every other day, to slowly withdraw from taking it! Nothing negative or positive to report yet. Which I am hoping is a good thing.

    Has anyone tried Serenity Cream (internet purchase)?

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    • Posted

      I too am on my withdrawal weeks  on my 3rd week and omg the hot flushes are unbearable and i have no energy i feel light headed and dizzy. If it gets any worse i'm straight back to dr.  So i hope you continue to feel well. 

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  • Posted

    hello again

    I'm back on Black Cohosh now - taking about 4 a day one day then one or two on other days. I'm also taking red clover. My aching joints have subsided and I don't feel the exhaustion that I was feeling a few weeks ago, or the very low feelings I had on Livial. I think HRT can work for some people and not others. I cycle every day to work and go to the gym once a week and have been for a few years now, and I try to eat sensibly (vegetarian). I'm not overweight. I won't be going back on HRT having tried three lots now. My mild hot flushes are non-existent at the moment but I think regular exercise works wonders too. My gynaecologist said that the flushes do subside naturally but I have heard of them lasting years in some women! What a prospect.

    I think it's hit and miss really as to what works and what doesn't with different women. We are all different and I think we have to use trial and error to find what works for us, and what we feel comfortable taking or not taking, and our medication has to be tailor-made. I came off HRT of my own accord and I'm glad I did. Herbal remedies are quite potent too so care is still needed when taking these - do your research though and you may not need HRT..

    In reply to Andi - glad you are feeling no ill-effects with the Tibolone withdrawal..I haven't tried Serenity Cream....

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