Tibolone long term?

Women's health
1

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.    

2

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 :-)

3

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.

4

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.

5

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

6

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

7

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..

 

8

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.

9

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

10

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......

11

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

12

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

13

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

14

Exactly how I feel Karen.  Good on you for making a stance.

We know our bodies better than anyone.

 

15

Hi Karen96338 

I also was weaning myself off Livial and was down to 1/2 tablet each 2. day and all hell broke loose .... bad headaches, joint pains, all Fibromylagia symptoms worsened and I had hot flushes so bad I could not sleep as they occured every 20 minutes. Now my doctor has put me back on my dose which is 1 Livial every second day. I was on the lower dose of 1/2 every second day for 5 weeks and symptoms got worse. I also had breast tenderness , did anyone else have this when trying to wean off Livial or during menopause?

Now it is my 4rth day back on the regular dose. The only thing I could report as slightly negative is that my skin ( always tends to be on the oily side) has broken out a touch again with tiny pimples here and there and they were just about gone whilst I was weaning myself off the Livial.

But I would not wish for anyone to be denied this treatment which to me changes the quality of life so much for the better.

Warm regards from a hot and stormy Tasmania 

Tia

16

Hi there Tia, why did your Doc take or want to take you off of

Livial?  In my case it was because I have been on for so long,

about 14 or 15 years.......and soon I will be 70.............I dearly

want to go back on it, but have spent half the night up reading

why I should not do so........have my doubts about all these

tests they make and then pronounce their "findings".....anyways,

I did not have breast tendernesswhen weaning myself off Livial,

about menopause.........that was when I was 56 or 58, so I can

truely remember. Best regards, G

17

very interesting...tia...we should all get together, i am sure we could help with sorting all this out...with those who study it...lets go to univ. eh...!! joke...livial seems very important..glad i started this...because it was SO IMPORTANT to me...those who have read my story, and what i think is now MS symptoms...i ihave this morning woke up to deaf in my right ear,was deaf in my left a few weeks ago, and had to hold the phone to my right ear...beleive this or not, it is true...but, i started on comoputer,and my right ear clicked...but still very quiet, and my voicre is to...and i can hardly hear the radio, or me tapping the keys here...food for thought...wish i never had to come off it, becuase of AGE...i am old i am told, despite it was a great life being on it.barbie.somehow to cope with the day now, and smile, hehe.!!

18

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 

19

Hi Tia, I always have had tender brests anyway I know whlist I have been taking HRT they have grown!!!! but wished I had them when I was young too late now!! the only downside of taking it was I gained weight, but to me thats a price worth paying!! I really dont want to be skinny and miserable I would much rather be fat and happy hehe x

Warm regards,

From a cold and rainy England as always!!

20

should be massage cream!