Menopause Matters Forum
General Discussion => New Members => Topic started by: thetimeofmylife on May 08, 2013, 04:32:56 PM
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Hi everyone - just joined and hoping you can all help me in the future months. I'm 61 years old and have been on Premarin 1.25mg since my hysterectomy 24 years ago. I have had no problems at all during this time and HRT suited me very well. My Doctor informed me a couple of months ago that now is the time to start coming off HRT - Eeekkkk! - and we have worked out a system that we are both happy with and so far, so good! I've had a month of Premarin 1.25 taken on alternate days to the next dose down Premarin 0.625mg. Everything has beenas normal except a very blotchy red neck...? Any ideas anyone? I am now on month 2 and taking Premarin 0.625mg everyday for a month. I've been taking this dose for a week and have started with a few headaches which is something I don't normally suffer from but other than that (and the blotchy red neck!) I feel more or less the same. I've to go back to the Doctors at the end of this month for alternate doses of 0.625 with the lowest dose and so on. I wondered if anyone had any experiences of weaning off Premarin? Look forward to getting to know you all.
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My mother in law is still taking HRT 1mg (can't remember what) since a hysterectomy in her early forties. She is now 67 and has no intention of stopping HRT - I think her GP thinks this is the best safeguard against osteoporosis.
Welcome to the forum!
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Hello and welcome xxx
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Hello there. I was on Premique medium dose for about 4-5 years when my doc suggested I try the lower dose (0.3mg) one prior to stopping. I was on the 0.3mg one for about a year and then I started reducing the dose very slowly. Started with missing one tablet out of every four, then 1 out of 3, one out of 2 then took 1 tablet every 3 days and 1 tablet every 4 days then stopped. Each time I made a change I waited for 6 weeks before making another change. Everything I read said that slowly was the key and my doctor was quite happy for me to do it my way. There has been no return of symptoms at all since I stopped - a few weeks of broken sleep every time I made a change and the odd feeling of being quite warm at night but nothing major.
I think after such a long time on HRT your doctor is making too many changes too quickly. I would suggest staying on the medium dose (0.6mg) for about 3-4 months before coming down to the 0.3mg dose, again staying on that for 3-4 months before dropping to 1 out of every 4 etc etc.
Good luck,
Bramble
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I used to be on premarin many moons ago, but switched to gel. Changed to patches a year ago and now on lowest dose estradot. Due to other things which have happened personally in recent weeks GP says not to come off completely at this time, which I am thankful for. I guess everyone is different, but to be honest I would happily stay on my current dose if they allow it. Too scared of the flushes, sweats etc I encountered last time I came off HRT.
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Thanks ladies. It's always good to know how things affect other people. Bramble - I think I may take your advice and stay on 0.625 for the full 3 month pack before dropping down to the lowest dose. I always said I would never come off HRT as it worked wonders for me personally and I literally felt like a new woman after my op and going on Premarin. My main worry about coming off is I have mild spondylitis of the upper thoracic spine due to years of being in a 'desk' job and I'm a little scared that coming off HRT will make it worse and I end up with the dreaded 'hump' . My Doctor has agreed to regular bone scans so I'm pleased about that. Did you or cubagirl have the blotchy red skin on your neck when you reduced your dosage?
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Has your doctor considered putting you onto patches which are seen to be the safer option over 60? I am 59 and have tried to come off slowly but the symptoms always come back within three months or so. My doc and the menopause clinice have explained that pill HRT would put me more at risk of stroke over the age of 60 but that patches are safer - although obviously still carrying risk.
I hope that you continue to do well on your weaning off but if, like me, your symptoms do return after around twelve weeks of no HRT then it may be worthwhile asking about a patch regime.
Taz x
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Taz2 - he never mentioned patches but did mention the stroke risk as I've had high blood pressure in the past although no longer on medication as it got back to normal levels this last 6 months. Lost some weight and started doing regular walking every day which brought it down substantially. I'll bear the patches in mind though if things don't go to plan. Thing is, when you've had a hysterectomy early in life, 37 in my case, it's all guess work as to whether you've come through the other side or not regarding menopause when you reach your 60's.
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It is difficult to know if you ever "come through menopause" to be honest. HRT often delays it so even if you are in your sixties when you come off the symptoms return. You could be one of the women who doesn't experience much in the way of symptoms anyway. If you started HRT immediately following your hyster you wont know whether you were a really bad hot flush sufferer for instance.
I started it due to the tremendous hot sweats, tiredness, muscle pain etc. and now when I try to come off the symptoms return exactly as they were before. My GP did explain this to me before she prescribed it but, in those days, I was due to retire at 60 anyway so thought I could just stay at home and sweat quietly to myself if the symptoms were still there. Now I have to work to 65 and the thought of having five years working without HRT fills me with dread.
Well done on walking to get your blood pressure down.
Taz x
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HRT often delays it so even if you are in your sixties when you come off the symptoms return.
Not necessarily! My symptoms did not return when I came off it! We are all different and it is impossible to predict what will happen when you stop HRT. The only sure thing is to decrease the dose very gradually.
Bramble
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I did say "often" not "always"!
It's great that yours didn't return. How long did you take it for, if you don't mind me asking, and what age were you when you stopped. It's interesting to hear different experiences. I withdrew very gradually but it made no difference to stopping abruptly.
Taz x
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Hi,
My friend was originally put on HRT because she started having very bad PMT and it was thought she had started the menopausal process at 45. Seven years later she came off it quite quickly. She noticed a few hot flushes but nothing untoward. She says that she wonders if she really needed it in the first place.
I am 52 next month. I started having sleep wakenings and hot flushes 4 or 5 times throughout the night when I was 49. my GP prescribed premique low dose for 3 months to 'give it a go'. I did get some relief from it, but otherwise, not much else. As I was still perimenopausal at the time, I was concerned I was a drug for post menopause, so didn't tell my doctor, but just didn't go back for more. I then started taking soya tablets instead. For the whole of the winter, it settled down, but then came back again in the Spring.
Then it all settled down again once my periods stopped in January. Now I have had some gynae surgery - kept ovaries, but it has started again, the sleepless problems and hot flushes in the day. I wonder how much ovary they took when the cyst was removed! Anyway my GP has offered it to me again, but we think it will settle down. I really don't want to go back to where I was, when I have already been through most of it - hopefully!! It seems to appear every Spring. I wonder anyone else has this, where you think its finished but then it starts again.
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I think that happens quite often pixie. One of my close friends is 60 and has never taken HRT. She suffered dreadfully from day and night sweats from the age of 52 to 58 when she finally felt she was "through it". Her sleep improved. She could start part time work again and her flushes had almost gone. Over the last few months all the symptoms have returned and she feels back to square one. Hormones are obviously very contrary beings!!
Taz x
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It really does start up every April. It must be because things in life are starting to wake up, plus the bits have had a prodding from the surgeon!! ;D
Has anyone noticed a much stiffer neck at night too?! :-\
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It's the not knowing that bugs me too! I often wonder if I needed it but I wasn't given the option after surgery. It was a case of I had to as 37 was considered too young to start in menopause so I've never known anything but HRT since. I'm lucky that I've never suffered night sweats although I do have hot flushes now and then but nothing too bad. A quick dash to the door for some fresh air and within seconds, I'm back to normal. I do get what I call 'flustered' every now and then though! I have days when I do the stupidest of things and it goes from bad to worse as the day progresses and a general lack of confidence about whether I've done things properly such as lock the door, turned the lights off, turned the oven off and the worst one of all - 'Oh no, where did I park my car? It was there before, I'm sure it was!" and general panic sets in!!!
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You wont know whether you needed it for symptoms of the meno but you did need it in order to give both your heart and bones the protection they would normally have had.
You are talking about "meno brain" and we all know what you mean as regards not being sure whether you have done something properly. Mind you - my husband is exactly the same so perhaps it is just a general getting older thing?
Taz x
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Also it tends all get worse the more stressed you get about it. When I speak to some of my colleagues everyone is getting something, and we forget that it is a natural process. My boss is 50 in July, and I notice she has started getting flustered and getting hot. I forget stuff a lot, like I put something in the fridge that shouldn't gone in microwave etc! I've allways been absent minded. I had a hot restless night again. Asleep at 12.30, awake at 2.30 and then again around 4 or 6. However, I don't feel bad this am. My hot flushes are just enough to wake me up, but I tend to go back to sleep. My GP said his wife, who didn't opt for HRT, had a bad time of it for a year and a half and now hers has settled. Some people use a fan, but I think they are only useful if you are hot for any length of time, because I tend to get very chilly quickly. Some use that magicool spray. I can't get on with either of these, because if it happens in the night, the covers go off and then I wake up shivering! I tend to sweat at the back of my neck and arms mainly, and must remember to tie longish hair up at night - maybe that would help!!
Its the feeling you get with it that is sometimes very unpleasant - as if one is climbing a very steep roller coaster, but without all the fun. Then I wonder how hot I'm going to go! I practice slow deep breathing at this point!! Sometimes I would wake up with banging headache and feel like I had been to an overnight party without the fun, but thank goodness not had that for a while!!
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How long did you take it for, if you don't mind me asking, and what age were you when you stopped.
Taz x
I had taken it for 6-7 years and was 58 when I stopped.
Bramble
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Ok - I was rather hoping you would say you were older than me (59) when you stopped and then I could think that in a year or so I might be ok although obviously I would still need something for the vaginal dryness! ;D
Taz x
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My Gynaechologist has said that I need to come off HRT at the end of this year .... I have been on it for 5 years in November and will be 62 years old then. I'm already reducing the dosage, through choice, to see how I get on using less. I used to use Estradose gel 5 days of the week and nothing at the weekend (prescribed dosage) but now use it Monday, Wednesday and Fridays only. I'll continue in this way for about 3 months then reduce to 2 days only probably in Sept. Hope I'm doing the right thing ? Just preparing myself.
Meggie
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It really does start up every April. It must be because things in life are starting to wake up, plus the bits have had a prodding from the surgeon!! ;D
Has anyone noticed a much stiffer neck at night too?! :-\
Pixie this was me when I was in peri, apart from the prodding by the surgeon! I would have no periods or any other symptoms over the winter months but when spring arrived everything went haywire, it was just awful. I had to cancel a holiday last year, my anxiety was so bad.
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Hi
Ive had a red flushed neck (starting to bother me) for a couple of years. I put it down to eczema but realise it must now be hormonal.
It is very prominent and makes me very self conscious.
Best
Jayne
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I was beginning to think it was only me! I knew about the flushing at the sides of the neck was due to HRT as the lady in my beauticians mentioned this to me. Since I started weaning off, it's gone completely round the back of my neck and onto my chest. Sometimes it's just bright red like sunburn and then other times it's all blotchy like an allergy. I'm hoping it will settle down in time. I'm now on my third week of the medium dose of Premarin 0.625 full time and due to see the Dr on Tuesday to discuss the next step. All is going well so far - apart from the red neck LOL! But I can live with that for now ;)
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I think it's lack of oestrogen as mine has calmed down overnight with my new patch. Wish I'd done it years ago
Jayne
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Well, I'm on step 3 of being weaned off Premarin and so far, not too bad. In fact, pleasantly surprised as I thought it might be tougher. I'm now taking alternate doses of 0.625 and 0.3 and then will be on 2 more months of 0.3 to see how I go on. Only symptoms of withdrawal of the higher dose so far have been blotchy skin on neck which I can live with or easily cover with make up and strangely enough, I seem to be producing more plaque on my teeth - sorry if this is too much information! I'm fanatical about flossing and brushing and floss every morning with both tape and the little brushes in between before brushing and there certainly seems to be more than before. Anyone else noticed this? Good things that I've noticed:- less anxious, hair is starting to thicken slightly, less top lip hair, and BP come down too so more advantages so far than disadvantages! I'm going for a bone scan on 1st July which I was due for anyway. The bone degeneration was my main concern about lowering the dose and ultimately coming off altogether so at least I'll know the situation with my joints before I totally withdraw. Fingers crossed everything is still OK.
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Hello again ladies! Well a quick update on my weaning off process for you... I've been for a bone scan today and will get the results in 2 weeks via my GP. One thing that bothered me greatly about coming off HRT was bone degeneration as I already have spondilytis of the upper thoracic spine. I am now on my last week of alternate 0.625 and 0.3mg of Premarin and next week will start the remaining two months on 0.3mg all the time until that pack is finished then I have to return to Docs to see what the next step is.
I am pleasantly suprised at the outcome so far in that I've noticed only one thing which is worse and that is the joint pain in my neck which has spread down the front of my arms but this could be due to being extra busy with work (I'm a florist and it really takes it out of these)
Good things that have happened since lowering the doses are my hair has got noticeably thicker, my skin is clearer, I don't have anymore crashing out fatigue sessions, my moods seem much more positive and happier with life so all in all, it hasn't been the horrendous experience I'd anticipated!
When I went for my scan today, they weighed and measured me and I was shocked to hear that I have lost an inch and a half in height since my last bone scan 7 years ago so I will be speaking to the Doc about that when I go for the results.
Hope everyone else is doing OK.
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My bone scan was brought forward by the way as it should have been the 1st July.
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This is one of the things that worry me about stopping HRT, in that lack of estrogen can be a problem with osteoporosis! Is that not a good reason to continue with HRT?
Also bladder problems and VA are due to lack of estrogen - why when these can be possible problems are women made to feel they must stop HRT?
I just can't understand why women are made to feel they have to stop taking HRT. The estrogen is not going to come back, so why can't we continue to replace it?
I would rather take one tablet to alleviate lots of problems than take lots of tablets to cover numerous symptoms!
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To be fair women are only asked to stop HRT, usually, when they get to 60 years of age and this is because of the increased risk of breast cancer and stroke. They are rarely asked to stop products such as Vagifem because the dose of oestrogen is so low.
It is a case of weighing up the risks and deciding whether to take them I suppose.
Taz x
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The 2002 WHI results stirred up such a lot of anti HRT feelings and we are still living with those results even though more recent analysis has shown findings to be flawed. Many GP's seem to still be following the guidlines issued after that study hit the headlines even though it is very controversial and more recent evidence seems to put HRT in a much more positive perspective with many positive benefits to women's health providing they can be helped to find a dose which makes them feel better which may be easier for women able to take oestrogen alone
Meg
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Agree with Taz in that I am 61yrs old and have a history of high blood pressure in the past and was on tablets for 10 yrs or so when I was on the highest dose of Premarin. Premarin has been established as increasing BP and the risk of strokes in people over 60 and this is the main reason he wanted me to try and wean off. My BP has come right down to the point that I no longer need medication which is brilliant. My Mum had a couple of mini strokes when she was alive but not a major one thank heavens which he also was a bit concerned about with me.
I am very concerned about the arthritis though and the slight loss in height since my last bone scan so I'll keep you updated on the next step of the plan!
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I'm back with a quick update! Since I last posted, I have had the DEXA scan and this revealed no osteoporosis but osteopenia and recommended having my calcium and Vit D levels checked. This I've now done and they've come back as normal but my GP says he will have me scanned regularly and blood checks too to monitor for any changes. I'm on my last week ever (!) of HRT after reducing right down to two a week of the lowest dose from the highest dose of Premarin. So next week, I will be pill free for the first time in almost 25 years YAY!
So to all those who are worried about coming off who've been on it for eternity (25 years in my case) and are terrified at the prospect of living without it as I was, it's definitely worth giving it a go. I feel fit, well and happy. Haven't really had any wobbles at all other than slightly more joint pain than normal but have put this down to the extra daily exercise I've been doing to help my bones for the future. I appreciate everyone is different and might not be as lucky as I've been in coming off but, for me, the benefits of coming off have been very noticeable such as my blood pressure has reduced so much that I no longer need medication which I had to take for 10 years because it was so high, my cholestrol is at last starting to come down, my skin is much healthier looking, hair is starting to thicken, and I don't get stressed out as easily. I haven't experienced any dryness at all (so far anyway) so I'm glad I took the plunge and also my GP's advice. Hope this helps anyone contemplating coming off!
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Thanks for the update and it's great that you are now feeling so good - especially with the thickening hair and more energy. Let us know how you get on once you are totally HRT free - I found that it took around eight weeks for my symptoms to creep back in once I gave up my half a patch but as you have been on a really low dose for a while hopefully you will continue to feel good.
Taz x :congrats:
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Will do, fingers crossed and thanks!
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Congrats, its so heartening to hear good news and gives us all hope for the future. Please do let us all know how things go and I hope you continue to feel really well.
Delilah x