Hi all
Just wondering how many of you have gone through or are going through an early menopause ?.
As I am going through it myself I also would like to know have you been told it's a consequence of Lupus or our drug treatments? How do you feel about it?.
Be as well as possibleX
I had early menopause, at 40. But my sister and my mother, both had early menopause, despite not having any autoimmune diseases. Having said that, I think there is a link between lupus and early menopause where there is no history of the latter in the family.
There has to be a reason for lupus hitting mostly women, I.e. Hormonal, so I'm not surprised that it is somehow connected to pregnancy and menopause.
As for drugs triggering it - no, I haven't been told that, nor I believe it. In many cases early menopause occurs prior to diagnosis, sometimes as a result of lupus, at a time when drugs haven't yet been prescribed, so I can't see how that could happen.
Stay well - not a pleasant period in our lives but it passes quickly enough (well, it took me about 3 years before the menopause symptoms settled down). Keep an eye on your bones from now on - not only steroids lead to osteoporosis, early menopause means there is no hormonal protection to them anymore, so double whammy.
Hi Purpletop
Many thanks for your helpful thoughts re Lupus and Menopause. I have read how we can follow our Mum's experience, interesting both you and your sister did just that!. It makes much more sense to link hormones with the cause rather than the drugs but I've been told it's the drugs. I've also been diagnosed with osteoporosis but have a good treatment plan for it and for keeping steroids to a minimum. How are you getting on with Cyclosporine ?. I hope it's working well for you.X
Ciclo has been great for my lupus, resolved all my symptoms although the memory was better on myco than on this one. But after a month of ciclo I started having blurry vision in my left eye, so rheumatologist told me to stop all drugs for a while and see if it improves.
Stopping ciclo wasn't so bad but stopping Plaquenil is torture! All the muscle and joint pains are back with a vengeance. And my eye is still blurry.
I've seen 3 ophthalmologists by now and after very thorough tests apparently my eye is fine but no one seem to know what causes the blurriness. I'm thinking it could be inflammation of the muscles around the eye because I also had difficulty opening my eye lid - weird feeling.
Hi Purpletop
What a nightmare for you with your blurry eye and Cyclo!. It's a never ending cycle of balancing risk versus benefit!. As you've got the all clear for your eye can you go back to your drugs?. Maybe too a short course of steroids might solve the blurriness if it is inflammation?. Are you due to see your Rheumy?.It's so cruel to happen when Cyclo has been very beneficial!. Good luck getting sorted.X
Steroids can cause eye problems too, so rheumy's reluctant to do anything but leave it alone to sort itself out. As you said, nightmare, although I feel strangely free without meds - I can now have no breakfast if I don't want to, or eat dinner whenever I feel like. Being on drugs so restricts our lives, everything revolves around them: can't drink grapefruit juice, have to take pill with milk, eat first then take pill, take pill at exactly 12 hour intervals - argh!
I forgot to ask - how old are you? The younger you are when menopause hits, the worse the menopause symptoms apparently. My sister had hers at 38 and she suffered dreadfully with flushes, brain fog and hair loss for several years until it stabilised. It depends on a person's acceptability threshold I guess - we are far more used to these symptoms from the lupus, I doubt you'll feel any worse than with lupus.
Hi Purpletop
So agree with you how drugs can rule our lives, when and how we take them!. I hope your blurry eye settles and you avoid a flare. I'm 42, first had menopause symptoms at 38 like your sister but I've been lucky not to suffer greatly with symptoms. It's hit me on the emotional side lately hence me asking forum. Thanks for your helpful insightsX
Good question! Feeling for you, misty. Am sure you'll get some really good replies. I agree with Purpletop that the younger you are the worse symptoms can be...and if you also have Sjögren's or sicca syndrome, as I do, the dryness aspects can be harder to manage & minimise.
My case is complicated because I'm a DES daughter, meaning I was exposed to daily high doses of the notorious artificial oestrogen DES (stilboestrol) in utero for many months. My internal reproductive organ birth defects set me up for early menopause. Some of my drs have commented that my DES exposure probably caused my infant onset lupus too.
My version of early menopause started with a long difficult perimenopause characterised by the classic symptoms, during which my gp tried me on oral HRT which I reacted to poorly, but stuck with for several years in desperation. Then the latest info on the dangers of oral hrt hit the news and my GP felt I'd been on it long enough! Once full menopause hit me, my gp tried topical hrt which gave me dreadful widespreading rashes, so I stopped the topicals promptly & concentrated on lifestyle management. During early perimenopause my lupus symptoms were also becoming more severe...even so, drs took several years to finally figure out I've been managing SLE all my life etc etc. Meanwhile I was diagnosed with another secondary gyn autoimmune disorder (lichen Sclerosus) which landed me carrying on forever a daily gyn treatment plan involving daily: soaking my undercarriage in prescription emolient baths, using prescription replens MD (great stuff) and the ultra high dose topical steroid dermovate. Meanwhile I went on an antiinflammation diet + supplements including high dose Vit D & omegas, approved by my gyn & gp. Eventually this regime settled my LS symptoms down to a bearable level...but I have to maintain the treatment plan conscientiously for ever, drs are very strict about this due to increased risk of cancer etc.
Rheumatology advise me that all this ties in with my version of SLE & sicca syndrome, and as I understand it, my systemic lupus meds are also helping minimise all my menopause problems.....am feeling a bit anxious about my latest 3 yearly bone scan report, due next week, because so far have spent 12 years fighting off treatment with bisphosphonates for my high rate of bone density loss: even before I started on daily lupus meds, I just couldn't face bisphosphonates because by then I'd been managing so many chronic upper GI probs and had gone on to discover I had chronic osteomyelitis of the upper jaw bone so was scared of the jaw necrosis that can come on with bisphosphonates....I could go on & on about things like the nhs gyn Physio pelvic floor training & pulsed shortwave diathermy treatments that have really really helped with my early menopause urinary Tract problems...but I'll leave that for now
Hope something in there is useful to you, misty, or others here who are interested in this BIG subject. I've found dealing with my version of this very distressing at times, but as I figured out how to cope, and as I learned to engage with my drs (I'm lucky to have female gps & gyns mostly) things became less upsetting and life now is good even in the gyn dept
Take care and be as well as poss
XO
Hi Barnclown
Thank you for sharing your early menopause story, so sorry that it has been a tough one for you adding to and causing many problems!. I have had some good replies and feel grateful I'm only getting mild symptoms that can be treated topically. I am having dryness problems without having Sicca or Sjorgrens. Good luck for your bone scan result next week. I can offer a wee bit of reassurance for your worry about the Biophosphenates regarding upper GI symptoms. I had to stop taking the tablets for the same reason and have an infusion every 18 months which has spared my tummy. I do understand your worry about jaw necrosis after all you've had to deal with and can only say you'll have to ask your doctors advice if your bone scan result advocates Bios. Fingers crossed it doesn't!. I feel better knowing I'm not alone with this issue of early menopause. Take Care X
Yes misty: am so glad you asked this question. You have given us a wonderful discussion.
My feeling is that the whole subject of perimenopause & menopause isn't discussed as much as it probably should be....if these phases were openly communicated about, most of the aspects that I found hardest could well have been much easier and happier to navigate. As I went through these phases, I read a lot & sought advice from others informally, + been forced to consult a lot of establishment & alternative health professionals & practitioners. It seems to me that there are so many misleading reassurances about perimenopause & menopause, and so few straightforward advices to help us prepare and cope with the reasonably basic aspects that really can be minimised (e.g. So far despite my high rate of bone density loss over 12 years my drs have let me postpone bisphosphonates and instead manage this via nutrition & exercise + The dryness aspects can also be minimised via lifestyle techniques)...I wish i hadn't had to learn all this the hard way, but that's life...& now I feel vvv lucky to be able to empathise & share & encourage
And these phases are naturally even more complicated for anyone on the sort of meds we take. But over the years, many of my younger & older sisters & friends have seemed to notice how well I've managed to cope with all my menopause related problems, and to my surprise many have turned to me for advice on the techniques, products and lifestyle management that can help us navigate perimenopause & menopause with as little disturbance and disability as possible. This feels strange to me, because most of them don't live with chronic illness, most have had children and aren't experiencing early menopause, whereas I was infertile due to my DES exposure and my menopause came on relatively early due to health issues. But this "change of life" experience is something we women all share. For instance just as the normal dryness most experience can be very very easily minimised with simple natural pure products used in simple routines....and these same techniques are equally effective for those of us with sicca/sjogrens
Thanks again misty for giving us this opportunity to share our experiences & solutions. I'm confident you have what it takes to navigate your version of this "change" without its challenges overwhelming you
XO
Hi, some drugs will affect fertility, I was treated with Cyclophosphamide at 29 which brought on an early menopause, my GP refused to test my hormone levels despite obvious symptoms, don't understand why, eventually another (FEMALE) GP confirmed it but this was almost 18 months later.Symptoms were awful, so referred to specialist Menopause clinic, commenced on HRT which did help a lot but also brought its own issues.Still on HRT now at age of 53, recently diagnosed with osteoporosis after 2 breaks, probably due to continuous steroid use for 32 years as well as early menopause, never been offered any bisphosphonates etc.Wish I'd been told about the effects of both steroids and Cyclophosphamide at the time, I do believe I didn't need such aggressive treatment, and going through such an early menopause had a really detrimental effect on my life.I don't think Cyclophos will definitely cause early menopause in everyone, but doctors should warn about the possibility- mine didn't.
Quite agree about steroids being very dangerous as I was put on steroids when I had an overactive thyroid gland and several years later I had to have both my hip bones replaced due to blood not circulating around the hip bones. This was all due to taking steroids.
Hi Vonnyrad
I so agree with you that doctors should warn us about the side effects of our treatments more because I wish I'd been told of the risk of an early menopause when being put on immunosuppressive s. I might have made a different decision as I'm grappling with that and like you been newly diagnosed with osteoporosis as well. I am lucky that my menopause symptoms are mild and can be treated topically , it's the emotional side of it I'm finding hard. You should have been offered Biophosphenates with your history , awful it's taken broken bones to get the right treatment. Are you on them now?. I feel very fortunate that I was offered them years ago because of my steroid intake and my Rheumy now has outlined a long term plan for treating me. Thank you for sharing your story and I hope your as well as can be.X
Hi, yes I was early 40's when perimenopausal now at 51 I'm still on HRT
Hi, yes I was early 40's when perimenopausal now at 51 I'm still on HRT
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