In April 2012, my OB/GYN said it was time to start thinking about another form of birth control -- one without estrogen. I was on YAZ for almost 12 years, and she proposed Mirena IUD. She just had her third child and had the Mirena IUD inserted, several woman in her office had it, and she couldn't say enough about it. She said the IUD was making a come back. I read the materials, I asked her questions about the side effects, particularly around whether or not I was a good candidate -- i have heart arrhythmia caused by electrical signal problem and am on Beta - Blockers. She said, No. I also checked with my cardiologists, showed him the materials, and he said, okay to get Mirena.
On April 15, 2012, I had the IUD inserted and I stopped my birth control pill. My body IMMEDIATELY went crazy, and that's an understatement. The fatigue, the pain, the chills, the mood swings (I was severely depressed and could barely wake up and think on a daily basis). It felt like my body was attacking itself. It got progressively worse.
A couple weeks after getting IUD, I went on a 7 mile hike, and it almost killed me. That week, I was almost crippled and in pain. Every joint in my body was in pain. The breaking point was about 6 days after the hike the joints in several of my fingers were black and swollen, and had pain in my feet, knees, hips, wrists, and hands. I was scared. I also couldn't close my fists and bend my fingers. It was also very painful. My boyfriend made me go to the emergency room. In the ER i was diagnosed with severe inflammatory joint disorder (every joint in my body was swollen and hurt to the touch). The ER doctors suspected RA (Rheumatoid Arthritis). They took all of the blood work they can take, including Lyme Disease, Hepatatis C, etc.
Of course, I told them about all of the changes my body had experience when I stopped YAZ and had the Mirena IUD inserted and asked if there was any relationship. They didn't think so, but they didn't know. They said my tests would help us rule things out and to follow up with a Rheumatologist.
At this point in time, let me provide the back story regarding my health: 2 years ago, my General Practitioner took my ANA and it was "borderline." About 4 years ago, a rheumatologist in Chicago (where I'm from, I moved to NYC in 2009 and currently live in NYC), also took ANA and it was also borderline. I also have suffered from severe feet pain for the last 3 years, hip pain, back pain. I also have had a lot of eye "issues" and started taking Restatis for dry eyes about 3 years ago. I asked my eye doctor if my eye issues could be related to an auto immune issue, he said no. This was ALL before the IUD and ceasing YAZ.
Back to current time.
I saw my General Practitioner, my cardiologist, and a new Rheumatologist referred to me by my general practitioner. She diagnosed me with sero-negative RA. All of my tests came back normal, including the inflammatory tests, despite the obvious inflammation throughout my entire body and my pain and debilitation. She said at one point that "you have an angry and aggressive form of the disease."
I asked every doctor i had about the IUD and YAZ connection to my recent issues and pain and inflammation. Every doctor said "not a chance" and "it's difficult to link a causal relationship between the YAZ/IUD and your recent issues because anything can set off an auto immune disease...."
Okay, fine. My instinct and common sense told me:
1. I stopped yaz and got the IUD and IMMEDIATELY my body went crazy
2. Within a few weeks, as I got worse each day, a hike sent me into some point of no return
3. I had serious inflammation and pain throughout my entire body and i don't think it's s coincidence that this all started THE DAY i got the MIRENA IUD INSERTED....
Therefore, I was reluctant to start methotrexate right away. I started steroids (Prednisone) because I couldn't function without them (e.g., couldn't walk, move, etc.). ABout 12 weeks ago, I broke down and said "fine, i'll start the meds and see if they work." Last night, I took my 12th dose of 8 methotrexate pills (you take your dose once a week on this drug) and it has not worked. How do you know it's not working? You decrease the steroids to the point of nothing, if you still have symptoms and pain (i do), you know the disease isn't in "remission."
About a month ago, my instinct kept nagging at me that i'm missing something. And, late on a Saturday night, I googled "Mirena+RA" on my Droid SmartPhone. When I found "Silicone Toxicity" and read the symptoms of Silicone Toxicity and they MATCHED RA symptoms, I almost died. I was angry, I was happy, my boyfriend said "I told you to remove that IUD immediately after you started with the issues..." However, I'm practical and I believe in science and I believe in my doctors. I trusted them. I called my doctors' that following Monday as I had found two bloods test that test for silicone: Silicone anti-bodies and serum. I called my general practitioner, my rheumatologists, and my OB/gyn to share my revelation and to see what they thought of it. My general practitioner was open to doing the blood test, and went on a quest with "Quest Lab" to find the right lab numbers to do the blood work. My Ob/Gyn said she knew nothing about mirena or silicon toxicity and had NO PATIENTS experience any issues with it. My Rheumatologist also knew "nothing" and didn't think there was any relationship and said I should talk to my ob/gyn who gave me the IUD, because she knows nothing about Mirena and auto-immune diseases etc.
My General Practitioner finally took my blood a few weeks ago, for the serum only, as the lab couldn't find the antibody test, and guess what? it was 'HIGH' and my levels were .19 (normal is .05 to zero). However, my doctor didn't know what to do with it. He doesn't know about silicone toxicity nor how to treat it. He is open to talking to anyone I find to learn more about it because now he is interested in what is going on. I saw my Rheumatologists last week, and gave her a copy of the report, and she still was in denial that there is any relationship, but said she was frustrated she didn't understand, and finally said she was open to talking to any doctor that knew about this and was open to "deferring" her recommended next steps if I wanted to do a "detox" or try something that could help eliminate my silicone from my body. I Didn't bother calling ob/gyn again.
The day I got my blood test for silicone serum, is the day I got the IUD removed, in fact, I had it removed two hours after i had my blood drawn. I immediately started "feeling better." I can only say i feel more normal, my boyfriend said "you are acting normal again".... I still, however, have joint pain. I"m still on steroids. I'm still taking methotrexate and I want to DETOX from the silicone and found Dr. Jennings (http://www.DrJNutrition.com) and also Kristi's blog (http://mylifeaftermirena.blogspot.com/), and have wrote both of them today.
As it stands today, I don't know if the Mirena IUD and the cessation of my YAZ kicked off an auto immune disease (in this case i'm told i have RA), or if i truly have silicone toxicity and when i detox and get all silicone out of my body, my pain and inflammation will disappear.
I DO think, regardless of what happens next, that the Mirena iUD is the cause of my current problems. I don't know if my current problems are permanent or temporary, but TIME WILL TELL. It always does. The most frustrating part has been the gaps between my medical doctors, their denial around silicone and its effects on the body, and the inability to understand or the willingness to learn about the issues the Mirena IUD could be causing to some woman who get it.
I want to hear more and learn more about other woman's experiences with Mirena and if they too have been diagnosed with RA. If they too have done a silicone test, a detox, and what happened next?
I canceled my appointment that was scheduled for tomorrow to get my first Humira injection (a biologic) that my doctor wanted me to start WITH the methotrexate. I NEED TO TRY TO DETOX TO SEE IF IT HELPS. I don't want to ADD any more drugs to my body at this point. I want to get off steroids and feel better. I want my body and my life back.
My doctor wanted me to start Humira (a biologic) and continue taking the 8 pill dose of methotrexate, folic acid, and of course my beta-blockers for my heart.
I finally started methotrexate and folic acid, and it has NOT WORKED. Last week, my doctor wanted me to add Humira injections to the methotrexate tomorrow…I canceled my appt today, because I want to see if I can figure this out and fast.
At this point in time, I'm open to doing a detox to see what happens to my body. I'm still on steroids and in pain because I've been decreasing the dose to see if the other meds are working, they are not…in the meantime, I'm suffering and in severe pain…everywhere.
What can you do to help me? What can I do to help you and any other woman going through this….
I'm concerned that the Mirena IUD is on the market and poisoning women and they are NOT listing it as a side effect. I need to do something...