LUPUS UK
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Post Menopause

I recently changed hospitals after a move from London to Yorkshire and have been told by new Rheumatologist that the new thinking is that Lupus stops after menopause so I can now come off of my Lupus meds and presumably not bother seeing him again as he turned up at the appointment with a file with "temporary patient" plastered over it and have received no further communication from him despite saying I would have a 3 month appointment and me chasing for it. I just wondered if anyone else has had this kind of information given to them, I also have interstitial lung disease which the chest clinic say is Lupus related but the Lupus clinic say isn't, possible heart problem (just being sent for tests), Raynauds, possible Sjorgrens, sun allergy, stomach issue, various joint and muscle probs like everyone else on here I expect but the Lupus guy said that's probably my age! Just pretty confused about it all and whether I should push for further appointments or just take his advice and leave things. Any advice would be appreciated thanks.

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Don't you just love the nhs what your reumatoligist told you would save them millions I can

Imagine the health secretary in his or hers office with Maggie may dreaming up ways to convince the ailing that indeed they are actually fit and well.

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Hi dear..i don't know about after menopause if lupus go away but your organs do damage preety bad with lupus..my sister just got her diagnosed and her heart..kidney..liver..and pancrease had already has some damages I was told by her Dr that she gonna recoperate since she is very yyoung..i hope to god she come around preeety fast..in my country we don't have a rhuematolgist but my sister is doing good so far with a dermatologist and a general physician

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Hope she is on the mend soon

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Hi

I'm certainly no expert on lupus as just diagnosed this year but what a load of guff!!

I started the menopause early 40's then started to get or notice more the various symptoms of lupus about 3 or 4 years ago when I was 50.

I think that would indicate that your "rheumatologist " is talking utter nonsense!!

I would insist on seeing someone else, even contacting your previous rheumatologist. Your health is far too Important to be shockingly dismissed like this.

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I totally agree CarolMcl!! 😠

I appear to have acquired symptoms of autoimmune disease (still trying to get some form of diagnosis) since my surgically induced menopause at 40 years of age! FF to the present and I feel (perhaps I am imagining all of this?! ) all the symptoms I am dealing with now are and have become increasingly worse! The problem is, at a ‘certain age’ in a woman’s life when the mentalpause (because it can be !) rears it’s ugly head GP’s do sometimes tend to think along the lines of the word and not so wonderful symptoms being menopause related. Not always!!

I would have thought quite the opposite...perhaps exacerbate the symptoms of autoimmune disease. If it were the case, there would be plenty of women waiting for menopause to show - then by some miracle their lupus will simply resolve! 🙄Who knows?

Certainly not the response you would expect.

I have had great advice and encouraging words from the people on this forum, kimmyw👍🏼It’s good to hear how others have managed to deal with confusing and conflicting opinions from consultants and GP’s during their long search for a diagnosis. It will be interesting to see if anyone has experienced similar to yourself.

x

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This happened to me too i.e. perimenopause arrived at the same (ish) time as the Lupus.

My aunt also had Lupus late and she died in her 70s still having it.

Your rheumy is on something (drunk with money saving possibilities)!

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Oh deary me, I'm so sorry you had this sort of response at your consultation. Sounds like complete guff, and even telling you to stop taking meds without follow up to see what happens smacks of possible incompetence. Many consultants like to go back to basics with a new patient who has been seen elsewhere, but not this.

I hope your new GP can fight on your behalf. Please try that route.

On a personal level, I had what in retrospect I think were auto immune problems after the birth of my second son when I was 38. Again, i've had limited periods of problems since. If anyone wants to link my current experiences to the menopause, be my guest, but at 61 and no menstuation for 5 yrs I think we're out of that territory.

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Exactly Lupiknits.

I am 20’years on too. Was 40 when hysterectomy performed I have been in this wilderness for the past 5 + years. I do believe it has been much longer when I look back.

And how would you explain this to a man? Perhaps, wait until he has also experienced his male menopause ...🙄

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If you were happy with your London team - there is no reason not to stay with them if you can manage the travel. You are in England - you have the choice who to see as a legal entitlement.

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I wouldn’t just stop your meds but would look fir a different consultant. There will be side affects if your treatment is just stopped especially fir you physically I am surprised at this suggestion I haven’t heard that these things disappear with the menopause? I would want hard proof in front of me before I would give it any credence and not just because he is saying it !! Go with your gut, it’s usually right good luck!

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I had an early menopause due to surgery at 29 and was diagnose at 54 with Lupus! The trouble with Lupus is these Rheumatologists know little about it, as it is so complicated. I think you are being fobbed off, you know your own body and symptoms, ask to see another Rheumatologist. Do wish you a positive outcome.

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Sadly that's a myth. Menopause kicked off my lupus. The same is true for a couple of friends of mine as well.

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Oh Brother!!! Are You Kidding me???!!! I was JUST DX'd this past Sept 2017 at age 62!! The only thing my Rheumy said to me is"because you are an old white female" I am likely to have a mild case......hmmmm...I think I do not believe your new rheumy...xx

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How rude!

Your are not old!! And you certainly don’t look your age-that’s for sure!

x

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lol...it kind of takes the pressure off when a DR says "you are old" ok, I was taken a back...but I think in an odd way she was trying to reassure me??maybe??? old white female ='s less severe LUPUS??? Right now as it stands, I have subcutate() Lupus....mainly my skin joints and fatigue....stay out of sun and stay away from stress....sun..ok...but stress??? HA!

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Ok, fair enough. That’s a very positive way of looking at it - perhaps👍🏼😊

Stress...not an easy one!

x

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I've had SLE since the age of 14. I'm 49 now and post menopause. Believe me - I still have Lupus. Having less estrogen in the system 'might' help with the illness a bit - but it doesn't cure it.

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And sometimes you get a decline of progesterone, which increases estrogen dominance. I'm pretty sure I've read somewhere that progesterone cream can help some autoimmune sufferers.

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Yep.

I don't know the full in and outs of it, but I believe that progesterone wards off what would be an otherwise natural reaction to a foreign body when women are pregnant - ie progesterone elevates during pregnancy to play a part in warding off an auto -immune attack on the fetus.

I think (?) a lot of women become vulnerable to a Lupus Flare - - post pregnancy due to the progesterone drop afterwards.....?

I'm sure its more complicated than all this - but when I went into menopause - I did ask a gynecologist whether I should take progesterone to help the SLE. She went along with it - But she was a bit flustered by my question so I really don't know whether it was a good idea or not.

I ended up - psychologically happier without it.

I had been on hormone replacement after early menopause but a Lupus specialist insisted I go off it to help the SLE.

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I’m sorry but I think that’s a crock of poop! My menopause started mid 40’s and all my weird pains and aches arrived in my 50’s and all the rest of the wonderful things I get followed on and on and on until here we are today

Please discuss things with your gp, or any other consultants you are seeing, don’t leave it.

You and your health are worth it, don’t let them fob you off.🌻

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So sorry for mis informed doctors. I’m passed menopause and have had lupus and other auto immune illnesses since my early 20’s. It definitely doesn’t go away. It might get a little aggressive but even that I’m not sure of.

Please try and get another doctor.

I’m in Yorkshire too and go to Sheffield hospital and have a very good rheumatologist and lupus nurse. I don’t know where you are but maybe you could check it out online and give the nurse a call and tell her what’s happening.

Good luck

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Sorry less aggressive I meant to say

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Hi kimmyw,

I'm sorry that your change of doctor has thrown up loads of questions about your care/treatment plan.

As other members of the community here have said, whilst it is observed that lupus tends to be less active in people after the menopause, it certainly does not go away completely just because of this and usually still requires some form of treatment - especially if it is still active.

In addition, despite lupus often being less severe in patients after the menopause there is an increased risk of comorbidities such as cardiovascular health problems which increase in risk with age naturally - therefore action should be taken to monitor patients and actively reduce the risk of any problems.

I would recommend that you ask your GP to refer you to a different rheumatologist for a second opinion, preferably one who has a specialist interest in lupus. If you'd like to let me know whereabouts in Yorkshire you are I would be happy to provide you with information about any lupus specialists we know nearby.

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Thank you all so much for your comments and support, I will go back to my GP and get some extra advice and ask for a second opinion.

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What a load of dangerous codswallop! Pifflewaffle all of it. I suggest you find someone else to look after you quickly before any serious damage to your health is done under his 'care. Id also report him plus do a written complaint to the hospital trusts CEO and PALS office. What a disgrace. Now I've gone through menopause at 53 i can stop taking all my meds then can i...i wonder if my kidney transplant will survive because the Lupus and immune system won't attack it according to that imbecile. 😠

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