Hi, my daughter was recently diagnosed with Lupus and Fibro and I am just learning about the disease. However, this morning I heard an interesting piece on NPR talking about MS that has me wondering. In the story they mention that many women with MS notice that their symptoms abate during pregnancy, so doctors have started treating them with estradiol (sp?) and they have had great success.
So I have two questions, 1) have any of you noticed that your flare ups are eliminated or significantly lessened during pregnancy? 2) have any of you heard of hormone therapy being used in treatment of lupus?
The link to the story is here if you'd like to check it out. http://www.npr.org/blogs/health/2014/06/02/317355068/pregnancy-hormone-may-reduce-multiple-sclerosis-symptoms
Well I have SLE and APS and pregnancy is the time that my illness manifests pretty dangerously. There is likely a link for many with lupus and estrogen. MS and Lupus can often present similarly but they are I have had a stroke and multiple miscarriages associated with APS/lupus. During pregnancy I take injectable bloodthiners. I have 3 biological children and I’ve had 5 miscarriages. Pregnancy is possible with lupus but it’s a high risk pregnancy and frequently monitored. MS and Lupus can present similarly initially but treatment during pregnancy is usually treated very differently.
I like how you think proactively, let’s keep in touch. I was diagnosed 4 years ago and I notice during my menstrual I go through flares or times of stress. Then my doctor said hydrochloric une is a salt based medication. Spelling is off. There has to be a cause that is basic for lupus. Please keep in touch with me I want to help in unraveling this mystery . I can tell you my walking is also affected during flares, if that helps any.
Yikes - so that's one "no" in the annecdotal column. I wish you well.
Jennifer said:
Well I have SLE and APS and pregnancy is the time that my illness manifests pretty dangerously. There is likely a link for many with lupus and estrogen. MS and Lupus can often present similarly but they are I have had a stroke and multiple miscarriages associated with APS/lupus. During pregnancy I take injectable bloodthiners. I have 3 biological children and I've had 5 miscarriages. Pregnancy is possible with lupus but it's a high risk pregnancy and frequently monitored. MS and Lupus can present similarly initially but treatment during pregnancy is usually treated very differently.
I like to unravel mysteries as well. Please do keep sharing what you find, and I will do the same. I'm always looking for connections and actually wrote to the scientist who did the MS work to see if she knows of any research that might show a connection to all autoimmune diseases. I'll share if I hear back.
Unshoreandscared said:
I like how you think proactively, let's keep in touch. I was diagnosed 4 years ago and I notice during my menstrual I go through flares or times of stress. Then my doctor said hydrochloric une is a salt based medication. Spelling is off. There has to be a cause that is basic for lupus. Please keep in touch with me I want to help in unraveling this mystery . I can tell you my walking is also affected during flares, if that helps any.
I had all of my symptoms go into remission with my first two pregnancies, felt horrid during my third (she was stillborn at 32 weeks), then felt ok with my last. I have three boys so I’ve always wondered if that little boost of testosterone is what made me feel better. It was when I was pg that I found out that most people aren’t in pain everyday. I’ve battled these since childhood so it was quite an eye opener to be free of pain. I actually lost weight the first trimester because I felt so great. I’ve always wondered if hormone therapy would help. I hit peri-menopause in my early 30’s and am post menopausal at 44. So I really think that hormones play a huge role. Good luck!
Thank you for sharing, Annemarie. I'm so sorry for your loss. I can't imagine how difficult that must have been. Your testosterone observation is interesting and I will add it to my list of interesting things to consider.
My daughter is 3 years old. I was diagnosed with Fibro at 13 and Lupus at 18. My 1st pregnancy ended in a miscarriage my second ended in a still birth. Finally after years of planning and trying in 2011 my daughter was born. My pregnancy was considered very high risk. Thankfully my OBGYN is located in the same hospital as all of my other doctors so the shuffle from doctor to doctor wasn’t too bad. Another huge plus is that I had an ultrasound weekly so I have a ton of ultrasound videos and photos! My symptoms did flare up a few times during my pregnancy however it was manageable with out medications. I am 23 years old my husband and I have been married for 5 years.
Oh, Ashley, I am so sorry for your losses as well. I had no idea that pregnancy was so difficult with Lupus. It is encouraging that you were able to go off medications during your pregnancy, without having symptoms go out of control. My best to you and your family.
Ashley Haugen said:
My daughter is 3 years old. I was diagnosed with Fibro at 13 and Lupus at 18. My 1st pregnancy ended in a miscarriage my second ended in a still birth. Finally after years of planning and trying in 2011 my daughter was born. My pregnancy was considered very high risk. Thankfully my OBGYN is located in the same hospital as all of my other doctors so the shuffle from doctor to doctor wasn't too bad. Another huge plus is that I had an ultrasound weekly so I have a ton of ultrasound videos and photos! My symptoms did flare up a few times during my pregnancy however it was manageable with out medications. I am 23 years old my husband and I have been married for 5 years.
I have never had a full term pregnancy so I can’t give you my answer but I have been a part of many lupus support groups over the years and I’d say a pretty big percentage of my friends who have become pregnant after a lupus diagnosis do go into a sort of remission during the course of their pregnancies. One of my friends (who had a huge support group to help with her children) had six babies because of how wonderful she felt.
Being asymptomatic during pregnancy can be nice but while some went right back to thier regular (for them) flare cycle, some had a monsterous flare right after the baby (which is why I pointed out my friend’s support system). Like everything else that has to do with this disease, there isn’t one way our bodies handle it. I’m a strong proponent of symptom journaling and keeping my doctor in the loop about everything in my life, especially journaling when you are going though a major change, like having a baby.
As far as hormone therapy goes, my doctor very reluctantly let’s me be on the lowest dose birth control pill available. The only reason is because I have extremely long and painful period that is compounded by the fact that I lose a dangerous amount of blood (periods lasting three months are not out of the norm for me) when I’m not on the pill. On top of her not wanting me to be on any type of hormones because of complications that lupus can cause I have also had a series of strokes a few years ago. She has told me the second it seems like the pill is causing problems she will take me off of them immediately and have me have a full hysterectomy. The pill, which seems like something so inconsequential in most women’s lives is one of the things that my (amazing) doctor worries about the most. So at least for me, hormone therapy (aside from the pill) is off the table. But as I said earlier, lupus treats everyone differently, so it’s really up to you and a good doctor to decide what is good or bad for you.