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I haven't been on here for a very long time. But here it goes . 5 years ago I had blood test done for lupus and they come back positive. I hurt all I over, every joint every muscle was sore, I was loosing weight, my hair was falling out . I couldn't hardly walk. I haven't been to a rheumatologist. Just my family doctor. I did some research and started taking bovine colostrum. I got better. I've had a couple of flares, one was when I got pregnant 3 ago. I miscarried at 3 months along. It took 2 yrs to get pregnant again, but I did. My OB watched me really close and put me ok 1 baby asprin aday. I did well thru out the pregnancy. Fast forward, she is 7 months old and I had the Merina iuc put in when she was 4 months old. My hair has started falling out my joints have started hurting and muscles ache and I'm so tired. I believe it's the iuc not the lupus. I am still nursing my daughter , so my options are limited to what birth control I can take, I probably will try the mini pill. This baby is my 5th one, so I've been looking into a tummy tuck, derma fillers and vein therapy. The tummy tuck is what is scarring me, cause of the lupus. Plus I have only been knock out 2 times c-section and wisdom teeth. I told the plastic surgeon my worries of a long recovery and scarring. I'm after reasurrance and help. Thank you

· Administrator
9,127 Posts
Hi Crazydaizy,

Welcome back to the site.

Your problems may not be due to the iuc, they may be symptoms of Lupus. Childbirth was one of my triggers. Others on the site have had the same experience. I suggest you have some bloodwork done to verify what exactly is going on.

The other questions are out of my realm of experience. Maybe someone else will come along and be able to help you.

Take care,

· Registered
2,872 Posts
Hello Crazydaizy

I suggest your priority should be a reassessment of your lupus status. The Mirena coil is usually very well tolerated by people with lupus even some who are very ill and I can find no mention of it triggering or flaring lupus.

In one blind study no flares were reported. By the way same for the mini progesterone only BC pill used by women whose lupus was stable.
As for other types of hormonal birth control, with estrogen, you need to be checked for antiphospholipid antibodies which could contraindicate their use because of increased clotting risks or aggravating the lupus. If you have no contraindications of any sort and if your lupus is stable studies have shown that these forms can be used without worsening the lupus as used to be thought.
Lupus is well known for coming and going. People can go into spontaneous remission, then it can start up again sometimes in a worse form. There maybe hidden symptoms such as blood disorders or kidney damage or the appearance of significant antibodies. As lazylegs says childbirth is a frequent flare trigger.

It is highly unlikely that the colostrum had any effect on the lupus because the only people who claim its therapeutic benefits are those selling it and there is not a shred of scientific evidence for their claims, in fact quite the opposite - it makes no sense. You were simply lucky.

I wouldn't want to have surgery done by a doctor who didn't want to know in detail about my lupus diagnosis and discuss my case with my rheumatologist. Maybe you never had lupus or your present symptoms are due to something else, since you don't say on what basis the diagnosis was given and GPs aren't usually expert enough to diagnose it.

However, people with lupus are very different in their reactions. Many have no healing problems especially if they have not been on Prednisone. The risks for surgery depend on how the lupus is affecting them. I don't think its possible to predict if the surgery will worsen disease or not. It is a trauma to the body as far as our immune system is concerned because it can't distinguish between accidental injury and elective assault.
You will find differing individual stories: some people have been just fine even after major gastric by pass type surgery, others have suffered severe after effects.
I hope you will see this surgery in the context of your overall health status and get expert medical opinion so you can make your choices with the fullest possible information. And Good Luck whatever your decision!

All the best
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