Menopause effects on lupus anyone?

[miccika1]

Im interested to know if anyone here had better or worse lupus symptoms after entering menopause?

[lupi123]

Hi mieeccikal,I was told at at st thomas hospital in january this year that my lupus was totally in remission and to reduce and come off my 400mg of hydroxy and i was on 400 mepacrine per week as well. i had reduced mepacrine to 300mg week and hydroxy 200mg daily alreadt by feb.

I was to reduce my hydroxy to 3 times per week but started to feel unwell...weak,extreme tiredness and in pain.

I was told to reduce mepacrine by 100mg per month and i have reached a dose of 100mg week now from 400mg week but i am now feeling tired beyond normal,in pain,sickly and i have regular double vision,numbness on wakening and skin rashes starting.

I do not think this is remission!!

Excuse my spelling and mistakes (sight impared due to stroke)

[Hidden in reply to lupi123]

Omg that is shocking. Once they realise the medication is keeping your symptoms at bay they will realise your not in remission at all. It’s just that the medication has stabilised you. Don’t they realise that it’s a life long illness it just doesn’t disappear. I hope you get it all sorted out. I am going through the menapause and am being tested for auto immune diseases especially lupus which they think I have but won’t confirm it. When I take prednisone I feel well and my symptoms disappear when I stop taking them I am so ill. I only get them for chest infections but they work so well. I know it must be so frustrating I wish you luck and hope you start to feel better soon. Have a nice day. J

[lupi123]

I was told i was a typical woman in remission having gone through menaphause!

[miccika1 in reply to lupi123]

So they told you that usually women go into remission after menopause?

[lupi123 in reply to miccika1]

i was told by prof d cruz i was classic case of lupus and that it can burn out after menaphause.....after assuming he was right i reduced meds and im suffering for it....waiting for a call from the hospital with advise now!

[lupi123]

I was told my problems now were all osteoarthritis related and discharged from st thomas's before they knew if i could manage to reduce meds! I'm under a new consultant rhuemy where it will not be possible to get mepacrine so i'm not sure what's next for me...

[DJK99]

Hello - have to say I plummeted since menopause.. but lots of complications around same time ie change of job to high stress/intense/overworked role, and also my mother passed away. I think we're all different - has someone said it improves then?? I suspect not, as far as my story goes anyway. Hope that helps x

[miccika1 in reply to DJK99]

Sorry to hear you are worse. When you say you plummeted, what symptoms got worse? Did you developed new symptoms?

[DJK99 in reply to miccika1]

Well I think it was really around the change in job rather than "the change". I had utter exhaustion, joint/muscle/tendon pain/issues, insomnia, brain fog, migraines, raynauds became very severe, and then with lesions, long term heart issues became severe (atrial fibrillation), sicca issues reared their head ie very dry eye and mouth, vaginal atrophy (bad) etc etc . I had always been hugely dry all over anyway inside and out/rashes/pain/ slept alot etc etc and always neutropenic turns out but that ducked and dived/continued. Just seems to me I had the perfect storm around 50 when I became menopausal - utter bereavement, social work job in a very complex user group and the team was was savagely under staffed (as ever), and my hormones were unhappy. I think in my case it really wasn't just menopause but the other factors. I retired on ill health grounds at 56 and am feeling much better exhaustion-wise as can sleep and rest as much as I need nowadays, and downsized to small flat. Are you in menopause or pre or? Could you let me know why you are asking as that might help me give you more info.

[DJK99 in reply to DJK99]

Just for info, I have always looked after myself throughout my life ie daily exercise, excellent diet, high quality vits etc.. I had to since very young as was quite unwell with, as it turns out, lupus, said my rheumy. If it wasn't for all of that I don't think I'd be in a very good state at all! Long story won't go over but have banged on about enough on here many times ;).

[miccika1 in reply to DJK99]

I have noticed that i feel completely normal whenever im one day before period and few days into the period. Thus should be time when female hormones are at its lowest. I also suffer from hormone related migraines but i can deal with that... I know that there are drugs to induce menopause and im wondering if such drug could keep my hormones down and therefore make me have less flareups and less migraine? I wanted to check with others if anyone got better after their hormones got steadily low.

[DJK99 in reply to miccika1]

I see. Personally I wouldn't play around with your hormones, they are very sensitive things as you know. Have you discussed with your clinicians? There will probably be a lot of research papers on this so maybe have a Google or see if Lupus UK has any information on their website.

I had migraines with visual disturbance throughout my menstruating years especially if very fatigued, hadn't eaten enough or regularly enough due to having too much fun ;). The visual disturbance and migraines stopped when I ceased menstruating, but as the lupus got worse the migraines returned with a vengeance - and when I went on hydroxychloroquine the visual disturbance returned too which was a shock, and with even worse migraines plus daily dreadful diahrea and stomach cramps. I had to come off it and went on methotrexate. The migraines without visual disturbance continued whilst I was still trying to work but really struggling - and completely dropped in number/turned into bearable headaches when I stopped working.

Hope that helps, take care.

[miccika1 in reply to DJK99]

Im planning to discuss this topic with my rheumatologist on Friday. I can't do anyway anything on my own considering i would need a prescription

[DJK99 in reply to miccika1]

Absolutely. I remember trying every type of pill when I was very young - I felt terrible and was in a right old mess. That was a very long time ago however and things have improved hugely on what can be done! I hope your discussion is helpful and you get some support on what's best to help you. All the best.

[Roarah]

Officially I am not in menopause but hopefully in five months I will be, but I have been known to go five months and boom it returns for a year and then stops again for a while.

I have actually felt so much better since my periods have tapered off. I had hot flashes at the end of 2018 for a few months right after my strokes but I think they were more tied to my anxiety than hormones for they disappeared when I started therapy and daily exercise.

I changed alot of my lifestyle at the same time I started to cease menstruating so it is hard to know what made the differences in my health but I feel so much healthier now than I have my whole menstruating life. I do not miss it at all and with medatation was able to end hot flashes.

My ana is down too and all other antibodies have disappeared since 2018. I am hopeful this trend will continue.

[sookey in reply to Roarah]

Hi Roarah

That’s really interesting. Would you mind sharing the exercise you use?

[Roarah in reply to sookey]

I just walk briskly an hour a day for exercise, clean my own house and mow and garden my half acre. I am treating ptsd with eye movement desensitization and reprossesing and mindfulness based therapy and my at home work is to meditate fifteen minutes per day. I use kk meditation daily and then a sleep hypnosis u tube at night. I like Mike sealey and progressive hypnosis videos alot.

Many studies have shown that meditation and or yoga have a great effect on hot flashes. Hot flashes may be a sign of poor vascular health and anxiety also effects our arterial health.

At the same time I added, weekly therapy. more walking and meditation I also started to eat 25 grams of fiber per day. I eat 2 servings of all bran every morning and a cup of brocoli with lunch. Fiber is really important for gut flora and gut flora may be a great influence on metabolic illness and autoimmune disease.

[sookey in reply to Roarah]

Thank you that is really interesting and helpful.

I used to dance but during my SLE flares I find it difficult to maintain my flexibility for ballet. I was interested to see you mention yoga and perhaps honing that skill with meditation might just help me.

Oh and fibre eh! Interesting

I will give it a try ☺️ Thank you

[SashaT64]

I had a very early (surgically induced) menopause and diagnosed with lupus 17 years later.....

[WinterSwimmer]

My lupus got much worse during menopause - but it is impossible to tell whether the two things were related, as this coincided with a period of horrendous stress. Like some of the commenters above I was convinced that things would get better after menopause - and I did have a couple of good years in which I took minimal medication, got off ESA and became self employed. Then last year things got very bad indeed. So sadly I don’t think remission is guaranteed post-menopause. But never give up hoping!

[Mala23]

Hi Miccika1, I had been sailing menopause. I hve been going through it since having treatment for breast caner back in 2008. As I understand it being on tamoxifen post cancer stopped hormone production forcing me into menopause. And because of the type of cancer I cannot have regular HRT. For the most part I was managing ok. The worst issue I had at this point was poor sleep and quite intense hot flushes. I had even come off Hydroxy in 2018. As I work as an holistic and Reiki therapist I really do feel that my lifestyle had helped me to manage my symptoms too.

However that all really changed last year. The flushes got so bad that i was constantly waking through the night, on the nights that I could sleep. Then there was the vaginal atrophy which the menopause specialist was amazed that my own GP had left me in such a state for so long. (The lead nurse clinician telling me that I just had to get on with it as there was nothing that could be done to help me manage.)

I had also started using the Ladycare Menopause magnet, which I must admit was a lifesaver for most of my issues and I recommend it to my female clients. I also take tumeric capsules daily, as I feel this helps with inflammation and aches & pains and the menopause specialist prescribed a very low dosage HRT pessery cream. I was allergic to the Replens cream so I buy the Regelle as this really does help me. The menopause specialist also suggested that I take Sea buckthorn berry oil, which is also amazing for me and my symptoms.

If you can find out if you have a menopause clinic at your local Womens Hospital. When I asked the Nurse clinician at my GPs she did not know about it, or said that she had not heard of it. It was only because someone that I knew had already been that I knew they even held it. So you may need to find out if you have one local to you.

I also find that eating a healthy diet, meditation, reiki, yoga and plenty of water/herbal teas really helps me.

I am sorry that this is a long rambling message but I hope that it is of some help to you.

One of the things that I have found going through all of this is just how much women are left just to get on with it and really suffer in silence. So I am looking at running a menopause wellbeing programme once lockdown is over.

I think when trying different techniques and such the best thing to do is go with what works for you. We are all individuals so we all need and prefer different modalities. Keeping your stress levels under control will be a great help too.

Namaste

[MissusTee]

I have multiple autoimmune issues and severe raynauds and I'm having a really bad menopause. I've had to go on hrt and I'm still having hot flushes which is difficult with raynauds. I can't see any relief from my autoimmune symptoms either.

[puffyface]

I am in peri menopause and have noticed that all symptoms are worse when hormones are raised. I literally feel rubbish and it’s so incredibly difficult to know how I’m going to be from one day to the next. You seem to have had some good advice on here.

[Whippet_lady]

I think I'm just out the other side of the menopause. I was diagnosed with lupus towards the end of March this year. For years I've been putting everything down to 'the change' and felt like my doctor (and family) thought I was a bit of a hypochondriac. I am now beginning to join the dots. Looks like the menopause might have been a big part in my trigger.

[lupi123]

I'm not great but not quite as bad today,waiting for a call from the hospital but i already know they will not give me the mepacrine i need so not a quick solution...i will let you know!

[Jumper99]

My autoimmune diseases including Lupus and APS got worse during peri menopause about 20 years ago and have got steadily worse since then. Yes, some people do find that lupus burns out after menopause and I’ve now heard of one APS patient being told that her APS might affect her less, but it doesn’t happen to everyone by a long way. If you are thinking of altering your hormones in any way , may I suggest you get tested for APS before you start to do so, just to be on the safe side.

[Jolevans]

Hi, I had a difficult menopause and found HRT made my Lupus worse. Now I’m over all that I would probably say although my symptoms are just as bad they appear easier to control with Meds.

Hope that helps.

[miccika1]

Thanks everyone. I took a lupron injection to mimic menopause and will know if it help me with lupus symptoms. My doc says it's unpredictable that it appears one third of people with autoimmune diseases get better one third worst and obe third sees no effect. I will know in couple of months which bucket i belong to...

[Roarah]

Good luck I hope it helps! Turns out I have to start counting again, had a period three weeks ago so technically I am still in perimenopause so I guess it was not menapause causing my better health after all.