Our rights are in danger. Please read this letter from a patient trying to voice her opinion.
June 5, 2008
To all it may concern:
This letter is in reference to the FDA’s involvement in compounded hormone replacements and the Sense of the Congress Resolution (H.Con.Res.342). I cannot stress enough how much this means to me and my quality of life.
I have a very involved medical history but I will try to keep this to the points that pertain to my hormone replacement therapy: Due to a miscarriage and the innabitly to stop my hemorrhaging, I had to have a particial hysterectomy at the age of 32. At the age of 34, I had to have my ovaries removed because of scar tissue encasement and the resulting cysts. I was then put on Premarin. I took this prescription for several years during which time I felt physically unwell. I had never been able to tolerate birth control pills and recognized the same side effects in taking the Premarin. These included dry coarse skin, hair loss, fatigue, foggy thinking, weight gain, enlarged and swollen breasts and depression. I thought that this was the way my life had to be…and I knew it was the Premarin.
By the age of 39, I had been diagnosed with Artial Fibulation, Atrial Flutter and Arthritis. Of course my heart was the biggest concern. Its rate would rise rapidly and then fall just as fast. Over the period of 6 years I had to have 3 ablation surgeries and finally had a pacemaker implanted. All this time, I was slowing down more and more, feeling much older than my years.
I next was diagnosed with the painful bladder disease Interstitial Cystitis. My physician told me that the hormone I was on was very hard on my bladder. It was decided that I needed to go off the hormones for a short period to clear my body and see how I felt.
It was incredible. I could tell a big difference within a week. At the end of three weeks, I was on my way back to my real self. My mind cleared and I had energy to spare. The all-over joint pain, (the “arthritis”) disappeared. I lost 35 pounds in about 2 months. What broke my heart most was when my husband commented that it was so good to hear me laugh again. I now know for me, Premarin was poison.
Unfortunately, about 6 weeks into my recess the excess energy made me unable to sleep more than a couple of hours. Combined with when the hot flashes and night sweats started, I began having more heart episodes. I had been unable to tolerate a hot day or even a hot shower without my heart racing so you can imagine what fierce hot flashes did to it.
I was put on bio-identical hormones. After some experimentation, I was put on 1mg etradiol and 0.25mg estriol in an olive oil base and have been on this formulation for about a year. This is working beautifully. I cannot over-emphasize the improvement in my life. I still have great energy, I sleep well, have lost more weight, my heart and bladder are calmer, my sense of well being has returned. I am, at the age of fifty, myself again. On my last visit to my cardiologist, he said I now only need a check-up every 6 months. My pacemaker had recorded only a few events. I told him I was now taking bio-identical hormones and his comment was “I don’t care what you’re doing but for God’s sake keep doing it!” Please allow me to.
I know that the FDA has its’ place and without some of its’ past support many things that needed to be removed from the market would not have been. But I also know that they have made grave mistakes and are making one now in the case of bio-identical hormones, especially Estriol. Several of the formulations I tried did not include Estriol. Only after it was added did my breast issues disappear.
As for the “false claim” of what IS bio-identical, I take it to mean as close as possible to we make naturally. Frankly, I could care less what it’s made of…it works. I’m sure I would not know what any medicine pharmaceutically manufactured and prescribed to me by my physician is made of. I have always read all warning labels and materials on any medication. I knew that Premarin was made from pregnant horse urine while I was taking it and thought so be it, if it works, which it didn’t. I want to continue taking the medicine prescribed to me by my physician THAT DOES WORK.
As I stated earlier, for me Premarin was toxic. I am sure I am not the only one to have had a bad reaction to it. I am sure of this because I have talked to many, many women over the years who have said so. Studies have come out as to the harmful effects that hormone replacements made by Wyeth and other manufactures can have but they are still on the market. If you must, for no other term, consider putting Estriol and other compounded hormones under the umbrella term of an “orphan drug.” You know, the drugs that the big companies can’t make enough money off of to bother making for people in desperate need of them.
I personally would pay any price to live my life as it is today compared to two years ago, whatever the risk, if there is one. I do not believe there is a risk for me as high as Premarin. Please allow my physician and myself to ascertain what the benefits and risk of any medicine available is in the course of any treatment I need. Today it is my quality of life. Perhaps tomorrow it may be how best to treat diabetes or cancer or stroke or Alzheimer’s. Who knows what anyone will face before dying. But we need to have all options available to us to fight for our lives as we see fit.
Thank you for your time and consideration,
Anonymous
