Tibolone Side Effects Help Please!!!

Women's health
1

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  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

2

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 - damn Hang in there - it all takes time for your body to adjust to these foreign but amazing newcomers in our bodies

3

Aw thanks for your reply x Where do i get the Ovestin cream from?

4

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   

5

Thanks Karen yes i will hang in there  xx

6

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

7

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 

8

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

9

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

10

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.

11

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

12

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

13

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.

 

14

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.

15

Hi I've been taking Livial nearly 2 years without any real side effects to date. I think it was about 2 months before I felt a notably improved sex drive. My moods are better than they have been in years. I still get the odd overheating feeling but much more bearable than previously. I feel much better on it than with the Ellest Duo.

Hope it works for you too :-)

16

Thanks Tracy for giving me hope...early days really then for me being on day 12 !!! xx

17

If you're lucky it will kick in earlier as I had my ovaries removed it may have taken me longer. Hubby will feel like it's his birthday ;-)

I also have started to take Ovestin after using Vagifem which is weaker but worked fine in the early days of AV.

Here's hoping x

18

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

19

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

20

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.