Hi, i’m Undiagnosed (waiting for Rheumy appointment after 2 positive ANA’s) but am wondering if there is a link with hormones and flair ups?
I’ve not been right since childbirth 16 months ago. I then had my first major symptoms last summer, not long after giving up breastfeeding. And I have also noticed each month when I menstruate, my symptoms get worse. I would love to go back on the contraceptive pill but am worried what it will do to my symptoms?
(Current symptoms are pretty mild, but I get joint pains, stiffness, feeling low, vertigo, dizziness, exhaustion and all over weakness, headaches to name a few).
Anyone know any links to possible lupus or other AI (as undiagnosed) and hormones?
I will make an appointment with my GP but he seems pretty clueless on the topic and there are only male practitioners at my GP surgery
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abt84
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Sorry to read of your problems and having to wait to see a Rheumy a long time!. It's tough when poorly.
It's interesting your symptoms started after childbirth because that can be the time when these auto - immune illnesses are triggered!. Symptoms can be dormant when your pregnant and you feel fine and can re-appear or emerge for first time once baby is born!, Hormones play a big part in these illnesses which is why the threshold for female to male lupus sufferers is 9-1!. I'm sure lupus uk on their website have a leaflet all about hormones or causes of lupus. Take a look. You've also got to be careful of the contraceptive pill with the illness too I think so best to take advice!. Hard when your go surgery has mostly male gp's . That's not good , they should have a balance of males and females. Do they do a well woman clinic with a female nurse perhaps?. Have you thought about changing surgeries?.
I used to suffer extra symptoms before my period and my consultant said I could increase my treatment to help then bring it down again when better and it did work!. Your not at that stage yet sadly but I hope my answer will help you to know what questions you want to ask your Rheumy!. Do hope you go fairly soon. Keep us posted how you get on. X
I too have an increase in symptoms as I begin to menstruate. Its quite difficult as it tends to start about a 5 days before and last until the same when finished and then the symptoms don't go away but are in the background.
I was started on hydroxychloroquine 400mg about 8 months ago and it took 4 months to get it working and I had some really good months then last month they started again and I'm back taking pain relief again, I'm waiting to see my rhuemy again to see what will happen next.
I am older than you though and in the peri menopause stage of life but I don't think it makes a difference what stage of life your in, hormones are a factor. Keep a symptom diary ready to go to see the rhuemy that can help. I'm under the uctd umbrella as I had a positive lupus test but am now negative.
I had an increase of symptoms before my period and then instant relief when they began. Interestingly, on the meds (which has reduced inflammation) I don't get PMT or pain with my periods. Yes they are connected!
You sound very similar to me. I can’t take the contraceptive pill as it sends me into automatic flare within 3 days.
My symptoms spike during periods of spikes in my hormones. I believed it was auto immune progesterone dermatitis. Now I believe it is a deeper issue.
Unfortunately my symptoms have got progressively worse since giving birth in 2013. I am currently waiting on a referral to a rheumatoid dermatologist clinic.
I would say that there very probably is a link although it would be hard to pinpoint it exactly. Having had SLE since age 23, I am now 50 and at the other end of the hormonal journey and I have noticed a significant change in the trend of my flares. Perhaps I am going to leave Lupus behind? Currently I'm experiencing more chronic pain and fatigue than ever before but it's not the relapsing remitting joint swelling that has been my companion for so many years.
That’s very interesting. I have read that some lupus sufferers go into remission with the menopause. I really hope that’s the case for you. Fingers crossed. Wendy x
Hello....My Rheumy gave me the impression that there is a link. I was Dx'd last summer/fall at the age of 62...When I told my rheumy that when I was in my 40's I got a hive like rash on my neck during mid cycle(I think)...she said AHHH yes hormones.....I'm late(in age) for getting Lupus, but I suspect my symptoms began about 20 years ago...
Hello. Yes, unfortunately there is a link. One of the accepted triggers for lupus is childbirth. Mine was started by the birth of my third child. I think I had warning signs long before that. But that truly kick started it. And my flares / bad days can be linked to my period, as well as stress and over doing it, the sun etc. Maybe this accounts for the fact that more women than men get lupus. The ratio is 9:1. Wendy
I am going to make a GP appiintment to discuss as I was hoping to go back on the pill, but sounds as if that might not be such a good idea. I’m sure the GP won’t be much help, but I still haven’t had my referral letter through for rheumatology and if the wait list is anything like Neuro (I saw in December to rule out MS due to family history) then it’ll be a 6 month wait!.... oh the joys!
Thanks again and if anyone has any tips or ideas to help with symptoms during periods then I would love to know!
With lupus you just have to take each day as it comes. If you are having a bad day, you need to be kind to yourself and get rest. Listen to your body. Eat well. Drink plenty. Gentle exercise 10-15 minutes walk a day, for example. If you need a day in bed, don’t feel guilty! Best wishes.
It is common for lupus activity to be related to the menstrual cycle. Therefore symptoms can flare up during and around the time of the period.
Progesterone-only contraceptives are okay for people with lupus. You can read more about birth control pills in our ‘LUPUS: and Medication’ factsheet: lupusuk.org.uk/wp-content/u...
Below I have included some information links which I hope you find useful:
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