Tuesday, October 16, 2012

Mirena IUD & Rheumatoid Arthritis (RA) and Silicone Toxicity


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.

I told my Rheumatologist and my ob/gyn about the tests.  They still say "don't know anything about this silicone thing."  My rheumatologist is supportive of me tryint to "detox" to see how I feel after a detox and if my silicone levels are zero….and she said she will talk to any doctor who can help me… okay, whatever…

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...

21 comments:

  1. Thanks for sharing ur information. i also had Mirena 9 months back and started feeling pain in my right knee. Doc said it s sign or early arthritis. I also had wieght gain, greasy hair, water retention in body which caused swelling in my hands, legs everywhere. I got rid of it today. i hope to get better soon.you are right Mirena IUD is on the market and poisoning women and they are NOT listing it as a side effect.

    ReplyDelete
  2. There are several types of arthritis. This rheumatic, rheumatoid, reactive, infectious, psoriatic and gouty arthritis.



    Rheumatoid Arthritis Symptoms

    ReplyDelete
  3. In many cases, women have reported that the Mirena IUD perforated or punctured the uterus or became embeded in the uterine wall.
    mirena iud side effects

    ReplyDelete
  4. Thanks so much........ I got mine removed yesterday, had for 2.5 years, never been so ill....... now have fibromyalgia and mental health problems...... what test do I need to ask for in terms of the silicon as it stacks up....... am in the UK thanks so much

    Maggie

    ReplyDelete
    Replies
    1. It's a silicon serum test. I found it in a Google search and a Rheumatologist in California created the Silicone Serum and Silicone Anti Body test. My doctor called my lab and they found the Silicone Serum test. I will be posting update on my blog this week. I am currently at the Mayo Clinic and have already learned so much and my retest of Silicone came back today and it is "zero" -- yes, .00. So much to update. Stay tuned.
      I'm happy you removed the IUD. All woman and bodies react differently but when our bodies react, OH BOY DO THEY REACT! Mirena is hiding these findings and i have a feeling it will come out....

      Delete
    2. Hi Jody,
      I am so happy I found you! I had a mirena inserted 4 months ago and developed stiff fingers about 3 months ago. The pain has become increasingly worse, and my GP has diagnosed RA in my fingers and hands. I am 40, healthy and VERY fit. I am in disbelief. I told my husband it was too coincidental that this started not long after my mirena, but it has been so hard to find conclusive evidence on line. Thank you. I see my ob/gyn on Thursday. It's coming out.
      I am in North Australia.
      Are your symptoms improving?

      Helen

      Delete
    3. Hi Helen. I'm happy you found my blog helpful. I hope you had time to read the entire blog, as I continue to update my journey as I experience it and unravel the mystery that is me.

      I'm also happy to hear you are removing the IUD. I say -- always, always listen to your instinct.

      Delete
  5. the mirena lawsuit has been shown to migrate to the pelvis, and adhere to the internal layer of the uterine wall and even ovarian walls. What makes this dangerous is that the device is difficult to find and remove.

    ReplyDelete
  6. My uncle is diagnosed with rheumatoid arthritis, believe me he feel tremendous pain. Doctor has prescribe him azathioprine medicine. We also done some research and found fish oil supplement are also beneficial in treating rheumatoid arthritis. Any suggestion?

    ReplyDelete
    Replies
    1. Yes. I have a lot of suggestions. I will be posting to my blog soon. A big update of information. Stay tuned

      Delete
    2. Yes. I have a lot of suggestions. I will be posting to my blog soon. A big update of information. Stay tuned

      Delete
    3. apologize for my delay. I highly recommend he read Eat to Live by Dr. Joel Fuhrman and The Food Revolution by John Robbins (10th anniversary edition), also check out www.nutritionfacts.org. If he starts with these three resources, I am confident he will start changing his overall health and mitigating his pain. My journey has been a process of learning and being open minded, and truly believing that I can heal myself through various factors: spiritual practice (meditation, yoga), intellectual process (reading and gathering information about our bodies and health), physical process (exercise), and emotional process (finding someone to talk to who will listen to you, writing in a journal and documenting how you feel, record what you eat, etc.). Finally, go to functionalmedicine.org, and look for a functional medicine practitioner in your area and make an appointment ASAP.

      Delete
  7. Hi Jody,

    Great use of keywords, found your blog easily :) First thanks for putting this out there for the greater good. I've had the mirena for about 18 months and I dislike how my body's reacted to it so I think I'm going to have it removed. I'm searching for answers as to why my index finger is swollen and painful. It's on my dominant hand so cooking, getting dressed, brushing teeth.. well it's hard and painful. Went to the ER, absolutely no answers. I'm thinking RA or gout, history of neither runs in my family. I highly suspect the mirena as I experience random sharp abdomen pains and jawline acne only since having this inserted. Thanks and I'm looking forward to reading more about what you've found out!
    ~Katie

    ReplyDelete
    Replies
    1. thanks, Katie. I'm glad you find this helpful. I need to start spending more time on the blog, but have been so busy working and healing. As well as gathering information and researching food, medicine, health, etc. It's been a journey, but don't give up. Listen to your instinct, and remember, FOOD IS A BIG BIG COMPONENT IN OUR HEALTH.

      Delete
    2. Hi Katie,

      I nearly fell off my chair when I read your blog. My index finger is also where the pain started! Sore and swollen, and particularly stiff in the mornings. It is getting progressively worse.

      I am going to keep reading! Did you have the mirena out and did your symptoms improve?

      Helen

      Delete
  8. Thank you for posting this! I went to get the Mirena today and it dawned on me that I should ask if it contains silicone. I have had allergic reactions to it in other products such as feminine products (note anything "breathable"), contacts, and caulk. I don't know what made me think to ask but I am so glad I did! I searched on my phone and found your blog. I told by OBGYN about your issues and she said she never even realized silicone was an ingredient. Now she is going to watch for these reactions in other patients.

    ReplyDelete
  9. Thank you for posting this. I have been a runner and swimmer for years and for the past couple months my hips, knees, and shoulders hurt so bad I can hardly function from the pain in my joints after any exercise. There's just no good information out there linking the two and I was starting to question my athletic abilities and committment, instead of questioning what the true culprit might be. Add that to hair loss and panic attacks out of no where and I think this four month Mirena expirement has met its end.

    ReplyDelete
    Replies
    1. Yes. Please also consider food and how you choose your food. Check out my latest posts and please read some of the books i recommend. I am confident it will change how you think and approach your overall health.

      Delete
    2. Hi Pax,

      I too am a runner and swimmer and had my mirena inserted 4 months ago. Apart from being diagnosed with RA in my fingers and hands 9 weeks ago, I also have sore ankles and hips and thought it too was me 'just getting old'. I am 40, a vegetarian and have always looked after myself and exercised. This thing is coming out. I knew it was too much of a coincidence that this has all started since I had the Mirena inserted. OMG!
      Helen

      Delete
  10. I too had signs of an autoimmune disorder shortly after getting my IUD and had it removed within 8 weeks. I have done several detoxes and diets and have not been able to fully get rid of my hand, wrist, elbow and ankle pain. I would go get tested but 1. I hate doctors (most anyway) and 2. I wouldn't do any treatments. I fear that it is RA but I have been treating myself with diet and essential oils. For now I am OK.

    ReplyDelete
  11. I have just had the coil removed after having it in for around 9 months. I had it removed due to tingling down my legs and sharp pains in my abdomen. I also have sore teeth and eyes and a sore head. all of this has become worse since I have had it removed and I have shooting pains all over me. I am also going to use yoga and meditation to help restore my mind and body. I find it totally disgusting how women are being conned into having this evil thing put in our bodies and doctors are totally ignorant to not only what's in the IUD but also the damage caused by the coil. hope you all get well ladies <3

    ReplyDelete