Hello lupies, I'm 56 years old woman and diagnosed with lupus 2 years ago. It was really confused at first with fatigue, hot and cold for 6 months until rash appeared when I was being outside on a sunny day, I thought I was going through menopause.
I searched online, they say lupus happens to woman from age 15-50 and get better when they are in menopause, something to do with the hormone.
Why would I diagnosed when I'm going through menopause, is it worsen or what? Some says youngers handle lupus better than older people. I wonder if any one out there diagnosed lupus post menopause. I read so much, but don't see anything matches my situation.
Thanks goodness....
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kimc
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yes...Im just turning 58 now, but i was without my period for one year at 53 and a half...in 2010...I found a ANA test ihad in 2008 just as i was menopausing ,that was out of range 1:160 speckled, but no one told me..i had the papers from then....Moving forward, some strange things muscle, mild joint, tiredness, whacky thyroid etc...finally i was sent to a rhumetologist in 2013, by then ANA was 1:320 and speckley...So things seemed to happen just going into the missing periods part of menopause....and all at the same time I had tons of stress looking after my Mum who was dying, and im a single parent etc...I think you can get lupus anytime, and that they are still trying to figure lupus out...I think gp and rhumeys are still stumped!
I'm sorry to heard about your mom, the stress and emotions may contributed to our symptoms. I too, a single mom likes you and my house was flooded at that time.
Purpletop,
Either trying to control my lupus, but it doesn't feel...get any better. Maybe slowly getting worse
I also see my gynecologist to know if my hormone had been imbalance and throw me out of wax. After my blood test, i was post menopause and she told me to take some menopause support estrotone...
Am I have both lupus and hormone imbalance? I'm still confusing and in the meantime I'm seeing both rheumatologist and gyny, and they both are not clear what caused. Blood test ANA & Sjoren positive and low WBC.
I don't know what are you taking, I'm on plaquinel 400 and muti vitamin, fish oil, vitamin C, b12 & folic acid.
I know lupies have different symptoms, but I have rash on my hands, scalp, some on face and neck...fatigue, joint pain in the morning, some day I don't want to get up.
Yup, stress and always being tired....then hormone ups and downs...Funny they don't think menopause and or post menopause is big for lupus, because your hormones are up and down....
Yes...My Mum was my best friend...no other family came, she didn't want home support either, so it was down to me (and I owed her)...Then one morning I found her gone....It was like a cosmic set up for lupus...menopause at the same time...
I'm so sorry to heard about family situation and could lead to effect your health. Sometimes, if I could control my stress back then better, I may not sick as now... or the health was already poorly and just wait for a right time to showed up...
Kimc I was told same thing as you regarding postmenopause being when Lupus usually slows down and improves. The connective tissue professor who gave me a second opinion about my RA diagnosis wrote that he didn't believe I had Lupus because of my post meno, post childbearing stage - when symptoms would be improving rather than progressing as mine are. He said I would have lung or kidney involvement by now if I had Lupus because my symptoms go way back.
He was a very nice man and very convincing but since I saw him I have failed to tolerate the drugs I was taking then and my Lupus-like symptoms have worsened. But my RA, which he confirmed, hasn't come back yet. I have come across others here who have disproved his Lupus theory too so not sure what to think.
My menopause came and went quite uneventfully, as did my mum's - all done by the age of 49. But both my parents died suddenly, both at age of 73 when I was peri-menopausal, so I think this might have precipitated my autoimmune symptoms - which seem to be morphing all the time so hard to know what is hormonal and what is connective tissue related. I understand how disruptive all this is but still don't have any answers.
I was diagnosed with sle at 52 eight months ago. I had a hysterectomy when I was 38 so went through menopause early. I am getting worse not better so the theory is very flawed and needs further investigation.
So, you went through menopause in such a young age, until now you diagnosed with lupus. So, is it the hormone or antibody one day just desired to act up?
And yes, lupus can be slowing down, doesn't mean it won't active or flare up if we don't taking care off it.
My Lupus was finally diagnosed because of blood tests taken when I was anaemic when going though menopause. Although as others have said it has since slipped out in conversations with GP that blood test taken previously had been suspect yet no-one had told me or acted on it. Initial diagnosis was Fibromyalgia. My Lupus has got worse post menopause, or rather become more evident, have had to take early retirement and what was once a busy active life is now severely curtailed. I have also read that post menopause Lupus often improves but personally have found not.
Talk about anemic, I actually diagnosed 10 yrs ago. I got used to have ion injections couple times a year and blood transfusion one time when my blood was extremely low.
Then pre-menopause, my blood cells got better, but my white blood cells got low. My MD warned it'll be tough to prevent inspections and...but never recommend resting and diet, and at that time I don't feel so much different other than tired, which I thought I'm getting older, amenia & menopause symstoms.
I read some lupies can qualified for disability, and my Rhreumy tells to discuss with someone else. I assume she's under pressure of the insurance company, her own benefits or she means I should talk to my lawyer group. I still working and people asked if I'm alright and that they are worry about me. I can work to Thursday, but Friday I feel totally exhausted.
Oh well, will see how long I can work. Just hope I can cope and not get worsening. I still have 9 or 10 years to go.
After quite a battle I am able to claim PIP, but as I say my mobility is quite restricted and I can't walk far so rely on someone to push me in wheelchair if I want to go shopping etc. I have problems with my balance which no-one seems to really be able to explain but having read quite a bit about Lupus and Fibromyalgia, it seems that eyes can be affected. Mainly it seems due to muscle tone. I was a teacher full time so my life style is now very different, and not one I would have chosen.
Kimc... I was going through menopause and diagnosed low end lupus. Which last seen shown negative and no lupus by old rheumy dr. From blood checkup. I believe there is some connection with menopause and hormones changing and lupus. I may. Have had low end my entire life, but it did start during peri menopause. I am thru menopause now, and still have some issues. Good luck
I am 57 and was diagnosed eventually in August 2013 after having a skin biopsy. The reason for the biopsy was because the previous year in September I had been out in the sun and developed a rash which gp was treating at first psoriasis then in the Feb I began with cramp and in my leg and aching joints. Gp referred me to rhematologist and in the April and after blood tests which came back fine eventually they decided to do a skin biopsy and this came back as lupus (sle). I have also gone through the menopause. I do have off days and am on hydroxychloroquine and I do have flare ups from time to time. I have had steroid injections every so often for joint pain but the last one didn't help too much. Am awaiting a scan for joints etc to see if there is any swelling and maybe change my medication. I am constantly tired and also have reynards too. Noticed this morning my hand were so cold and white until I had breakfast then they warmed up. I notice I am either hot or cold no I between.
Wow, my symstoms were almost likes yours at first. After being out on the sunny day, my head was developed blisters, i thought I was rellergic to my hair color. A week later, after being on my backyard for couple hours, my face was red and rash was on my arms and neck, my body felt liked flame on the torch. Nothing cool me down unless staying under cold shower for an hour, soon I got out I put a bag of ice on my head. It was a terrible experience and I had never heard about lupus before.
My dermatologist gave me predisone, the dose got stronger every time. It didn't go away but I gained 15 lbs in a month.
I requested biopsies and blood test, i need to know what is the treament for... I thought I may have some kinda cancer. Then the biopsies sent me to a rheumy.
I wish to find an older rheumatologist who is in post menopause, but I couldn't find one.
Before left the doctor office, i asked for the blood test results. I found that my b12 was in 1200, normal from 400-900, but doctor said everything were the same at last time. No, it wasn't. I called her, she said to continue take b12 and folic.
Is it a mysterious between the sickness and the doctor, is she really looked at my blood results or not?
I feel cold too sometimes too, but usually after dinner when it's 75 degree in the house, I have to put on socks and blanket to watch TV, then felt sleep quickly. But the day I feel normal, I couldn't falling sleep until midnight.
Lupus and post menopause, I wish I can separated them.
All my terrible symptoms started after a hysterectomy, complications and many drugs. I was diagnosed with a severe hormonal imbalance, very high platelets twice the number of normal, hypothyroidism, thrombocytosis, allergies, inflammation, anaemia and more, none of which I had before the surgery, drugs and complications. It seemed like my body was suddenly in complete imbalance. I have been 14 years trying to rebalance it, but it easily goes out of balance again. I find natural approaches are better for me than drugs which just make me so ill. I think anything can set off Lupus or auto-immune problems these days because our bodies are under so much stress from so many things, from toxicity in our foods, the air we breathe, the viruses going around, electro-magnetic fields of wi-fi, masts, smart phones/meters to stress of work and financial/partnership problems.
I find relaxation techniques are so important and looking after myself occasionally shutting off from the world, for want of a better expression, and giving my poor body time to get its act together again is so important.
We are not living in a natural world any longer and many of us have just had too much stress and toxicity upsetting our hormonal system along with everything else. There is no simple pill to fix it, but hard work as far as I'm concerned, to rebalance it all.
Hang in there and take care of yourself, you can do it if you put your mind to it because you know your body better than anyone!
I'm sure all lupies still continuing to learn why and how we got it, confusion to find the reasons and looking for the way to improve the symptoms. I'm also practice meditation somehow to help myself beside the medicine, we know it helps but warning for many side affects.
Omega says we don't get stronger on the older age at menopause. The hormones maybe acting differently on each body.
Cann is right, we live in the world full of toxic chemicals, materials and stressful or taking care others than ourselves. It's the time to look after our own body physical and mentally.
But the questions never get answers, once in awhile still wondering why me and why now?
I'm so grateful to sharing with all the lupus minds who diagnosed lupus from time to time, from different reasons, different places, different background and ages with so much experiences.
Am I someday hear one of us happily go into remission and show us how or ...there is a miracle to bring us back to normal? Hang in there..
Lupus doesn't get better after menopause. It's a myths some uneducated doctors seem to think it's true. Disease like Lupus won't care how old you are. Change in hormone balance (at around Menopause) will affect a disease like Lupus.
I know of people older in age who after being diagnosed with Lupus earlier in life have then had a negative diagnosis through tests - makes me wonder if the tests are wrong or the whole thinking regarding Lupus as a disease is misleading. Whatever, we have to deal with it ourselves for most of the time - all of the time for me because the conventional system hasn't helped whereas homoeopathy has, but our NHS has now cut out homoeopathic treatment, unfortunately and very unwisely, I feel.
The real fact is run of the mill rheumatologists merely looking at lab results (and ignoring signs and symptoms) are bound to miss how severely we are affected after menopause. There's always this persistent myths amongst MDs "these symptoms must be from her MENOPAUSE and getting old" which is not based on any science or logic. Suddenly, "we are all cured after menopause and lived happily ever after". I don't think so. This is partly a very biased, sexist view which sadly prevail in the medical community.
Hi I had a hysterectomy last year and I thought it was the menopause giving me the hot flushes but I know know its the lupus. 90% of patients are female because there is a link between estrogen and lupus. But I don't know if well have it harder or easier.. I hope it's the latter
HI Kim, I have already been diagnosed for discoid lupus in 1997. I was getting this hot flushes and I don't know if it is because the hysterectomy or the lupus (for what I have been in remission since 2012). I am awaiting blood results now. Thanks for your reply
Hope the hot flush from hysterectomy still better than from lupus. Good lucks with your test results and good to hear your discoid lupus have been in remission.
I am 57 now & Dx 4 years ago. My personal belief is that a very tough Menopause sans any medical assistance for same, combined with tertiary studies & shift work for the first time in my life actually helped 'turn on' the switch for Lupus S.L.E.
Now Post Menopause & am 'stable' for first time. Feeling O.K. not good but trying to lose weight & re commence exercise. In pain all the time, exhaustion profound. Mind clearer & emotions more under control. I take CellCept 2000mg pr day + Prednisilone 5mg (down from 80mg after a long stop start taper). Panedol Osteo (if necessary) is now allowed as my liver function is good again. Best Wishes to you. Kaz xx
Kazunlocked, good to hear you're first-time to feel better and liver functioning good.
Afternoon holidays, I'm a little flare up due to stress from cooking for family, visiting and had couple drinks.
Lupus in menopause could be ok when we continuing monitor symptoms closely. Don't think when it isn't active that mean we can do everythings we can, eventually, I thought I was limitation.
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