published by nonprofit Johns Hopkins Press
posted in hormones and lupus on June 11, 2023 by
Updated December 29, 2023
Lupus in women occurs much more often than in men. There are many reasons this occurs. Also, lupus tends to be more severe in younger women and often flares around the menstrual cycle.
Watch the video below that I made along with Kaleidoscope Fighting Lupus to know why these occur. They range from the bizarre (microchimerism) to the straightforward (effects of estrogen on the immune system). Make sure to join KFL so you are notified when other interesting KFL blog posts and videos are posted.
Click on the video below to answer all these questions about lupus in women and more.
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My first impossible-to-ignore flare of whatever I was struggling with 40 years ago happened within 6 months after the birth of my first baby, a boy. Every time I read about the potential impact of microchimerism I wonder if that may be a cause of my issues. Is there a test for that? No one else in the extended family, that I know of, has autoimmune issues.
Carolyn: Not that I know of. Plus, you would not know what organs to biopsy to look for it. Thus far, studies have specifically evaluated organs affected by lupus (such as the kidneys), then performed extensive chromosomal analysis looking for Y chromosomes. These are only research tools at the moment, I believe. The topic you bring up is interesting though. We typically think of postpartum flares being related to the hormonal changes. We should not discount microchimerism playing a possible role.
Thanks for your comments
Donald Thomas, MD
My first impossible-to-ignore flare of whatever I was struggling with 40 years ago happened within 6 months after the birth of my first baby, a boy. Every time I read about the potential impact of microchimerism I wonder if that may be a cause of my issues. Is there a test for that? No one else in the extended family, that I know of, has autoimmune issues.
I was undiagnosed as a child, though I had to stay at home when the weather was cold because my legs ached so much. Then at 40, I began to have mobility issues. Saw lots of different doctors with no diagnosis. At 50 I began to have significant fatigue issues. Was diagnosed at 55 by Mayo. Had menopause at 52. I’m 64 and have to take plaquinil and mexotrexate.
Have been on birth control for many years continuously. Ok’ed by my rheumatologist and gyno; I am negative e for Anti-Phospholipid Antibodies. This prevents me from getting a period, which turns my body and world upside down and an extreme amount of inflammation/flare ups. I think everyone responds to birth control pills differently.
Hi Dr. Thomas!
I appreciate your work and obvious care for people with lupus so much! I have had a diagnosis of borderline lupus for over 20 years (I’m 48). I have *some* markers in my blood work that *possibly* suggest lupus and some symptoms/conditions that are *potentially* lupus-related (alopecia areata, ITP – in remission for 20+ years, thankfully!, and polymorphous light eruption – plus allergies/asthma/eczema)…but not enough of all of these to make a lupus diagnosis “official” which, needless to say, is more than fine by me! (**fingers crossed**) That said, I follow your newsletter and try to learn as much as I can about lupus, in general, and follow a lifestyle in keeping with what’s healthy for a lupus patient.
I also had an episode of Drug Induced Lupus last year, apparently from long-term use of fexofenadine (Allegra, of all things). Fortunately, the physical symptoms went away soon after I stopped the medication (some of the blood markers are still elevated – I gather it can take a while for them to return to normal.)
Anyway, I know everyone’s sensitivities/specifics vary wildly from patient to patient, but I have some questions regarding menopause hormone therapy (MHT). I understand that MHT is not for everyone, but in some cases the benefits can outweigh possible risks. My questions:
1. Do you find that any particular MHT regimen has less side effects for lupus patients than others? (For example, a specific kind of progestin, or a particular medication delivery system, like patch or pill, etc.)
2. Any idea of how I might go about finding an endocrinologist or ob/gyn who prescribes MHT *and* has some experience with lupus patients? (My rheumotologist didn’t have much info here, alas.)
3. If I were to embark on an MHT “trial and error” to find the right dose for me, is there anything I should especially look out for during the process (besides rashes or feeling unwell, etc.)? Should I get more regular bloodwork when I get started?
Any/all thoughts appreciated! Thank you in advance!
Love from NY,
Dana
Dana: Thanks for the kind words and being so proactive in your healthcare!
– The MHT that has the lowest effective dose of estrogen would be the best for someone with SLE in menopause (Less likely to cause flares)
– Make sure you are negative for antiphospholipid antibodies first (ask your rheumatologist … if you have a lupus-like disorder, these should be checked)
– Most OB/GYN are very comfortable with MHT (I am not, and that is why I’d send my patient to a GYN)
– No extra blood work needed other than what you already get (but of course, ask your rheumatologist as I do not know your entire medical history)
Good luck!
Donald Thomas, MD
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