I have SLE ( Lupus) and was prescribed chemo to deal with a flare - didnt work and I ended up taking a biological infusion which did.... BUT the chemo brought on early menopause. I got hideous flushes and night sweats and had unbelievably heavy periods- lasted about a year before I realised something serious was going on.... so went to the gyne and he said it was meno.
I was then prescribed elesto 1mg pills, took away the sweats and enabled me to choose when to bleed 3-4 times over the course of the year- but zero libido and not sleeping, plus I felt old - skin, hair and general energy was low and mood was off the dial- rage for no reason and tears by turns.
Went to a new gyne who said the UK NHS won't prescribe expensive implants and coils as a first up, but he has suggested I move to the patches - evoril sequi and conti - taking alernate patches - or double the pills dose.
I am not sure what to do. My lupus is very hormone sensitive, my last lupus flare lasted nearly 4 years and was beyond grim- swollen urticaria face and body, massive dose of predisolone steroids which made me fat and unwell, and a rash all over my body and eyes.... so I REALLY dont want to upset the applecart.
I think the NHS demands the consultant put me on the patch before going for anything more expensive - but I run the risk of the wrong Rx which will bring on a lupus flare.
I have read the posts on patches here - THANK YOU LADIES for being so candid and helpful. I know I need to up the dose of HRT so might as well give it a go, but wondered if anyone had any experience of auto immune and HRT /Lupus ?
I want to feel normal again, I hate my GP who is a man in his 60s with no understanding whatsoever- I have private care and they initially refused Meno treatment - but given it is related to my lupus treatment I think they are now going to cover it.
I am worried about being on HRT until 'normal' age- not because of any increased risk * which there isn't really as it is a replacement for the hormone I would usually be producing, but I dont know what will happen - will I go through another menopause then > Will the remaining lonely foli's come back to life before they collapse again.
Anyone know what happens to those with early meno - when does it go away ? What is the likely timeframe.
Women are so private about this stuff in general conversation, I was totally oblivious until I faced it myself, looking back the symptoms were so barn door and clear- I should have known , but really I had no clue, just thought it was the steroids playing mayhem with my body.
Arghhhh... sorry this is a long, long post. Any input seriously welcome. I am taking calcium for bones - i had depletion already from the steroids - and I need to do some exercise- to lose that extra weight- I have put on a lot. Have been tempted to smoke ( yes I know, terrible) but it feels like a control thing - I got some give up patches so I will stop- the trick is not to start again if I get down about it all. I havent smoked much - and use it as a crutch when times get low- so need to steel myself to get through this change in tact, healthy and upbeat- hard sometimes tho.
x
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Topic: New to all this.....anyone else with SLE /LUPUS and early meno out there ? (Read 2131 times)