Mirena

A blog from the network, written by Bonnie.

Well, this was intended be a simple little blog about asking you all to sign a petition asking Bayer, the manufacturer of Mirena, to fully disclose the side effects of Mirena to potential patients.  But in checking back to the Mirena website to make sure I accurately used their wording concerning hair loss, I have now found that instead of just burying it as an “uncommon side effect, affecting less than 5% of users,” they have now removed it all together.  I am so outraged that I am literally shaking!  I am almost in tears.  When I initially figured out that the Mirena was what was causing my hair loss, I found on their website that it listed “hair loss” as an uncommon side effect (though I do not feel that something affecting up to 1 in 20 users should be considered “uncommon”).  In January, they updated their site to read “changes in normal hair growth cycles.”  And now, the only place that you can find anything listed on their site about hair loss is under the Physician Information tab.  It lists Alopecia as an uncommon side effect.  “Alopecia is NOT listed in the Patient Information or Safety Information section at all.  It simply says, “for a complete list of side effects, please contact your health care provider.”  The pamphlet I was given did not list hair loss, alopecia or changes in normal hair growth cycles.  How in the world are women supposed to get accurate information?

I had a Mirena for 11 months beginning in 11/07.  Without even going into the horror story of how it was inserted, I basically bled for almost 11 months straight, and was told this was “normal” and that it would eventually stop.  I noticed significant hair loss in August 2008 and was diagnosed with a very low ferritin level (I guess that’s what happens when you bleed literally all of the time!).  I did mention the Mirena to my GP but she did not think it was a factor.  I started taking iron supplements, as well as many other vitamins, but my hair loss just continued and I became very depressed.  My hair loss got worse and worse and I just could not figure out what was causing it.  I was literally always the healthiest person I knew. [click to continue…]

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