Just had my 6 month follow-up appointment with my urologist for my kidney stone (5 mm calcium oxylate midpole of right kidney). As I have stated previously, I KNOW that it was due to increasing my calcium supplements and not increasing my water intake. There has been no change in my KUB film (position or sizeof the stone), and since I remain asymptomatic, we are adopting a "wait and see" attitude.
Regardless, I was updating him on my reasons for discontinuing the biophosphonate medications for my osteopenia and he was extremely surprised that I would attribute my symptoms to this class of medication (chills, diarrhea, sternum pain, back pain, foot cramps etc.) I went on to provide additional reasons (The Myth of Menopause book) and he was totally unaware of this information.
It scares me that physicians who prescribe medications are unaware of possible side effects. Although I tried to pass along this information, he was running behind schedule and I don't think I had 100% of his attention. Therefore, it is up to us to educate ourselves and that's why this site is so wonderful!
Oh Yef, sadly this has happens so many times. I really wish that doctors had more time or took more time to be aware of the drug reactions before prescribing them. It was good of you though to inform him and I do hope he listened. Good for you for speaking up. Glad your kidney stone is still the same and you are having no problems. That is good news. I am still passing pieces of mine - oh grrrr, but it is not painful and I feel good. I so wish I had known about all of this beforehand, and I do agree that we have to keep eachother informed. Sad, but true!
I, too, went through what you and Glowing are going thru due to a kidney stone. And, I KNOW mine was from the massive doses of calcium I took for 1 1/2 years. But my urologist just wouldn't agree it could be from the calcium. He basically just treated it and didn't was to get involved with trying to pin down how it happened. He keeps deferring to my endo when it comes to my osteoporosis.
I have worked for physicians for over 15 years. I have seen them side step direct questions like..."how did this happen?" The truth is they don't know. They have standards of care, dictated by their schooling, they follow in any and all maladys and stick to them because of litigation. Right now biophospates is pretty much all they have to offer, warts and all. But with recent drug "problems" ie: Avandia, HRT therapy, and such, we know the drug companies may be more of an issue here.
Docs are bombarded with drug reps who tout their drugs and push samples. There are not enough hours in the day for an average doc to research and listen to us about our experiences with a certain drug. It's not until a bunch come to the forfront as the jaw problem with Fosamax that they start to listen.
So we must "police" ourselves. If those of us with the kidneys stones become the watchdogs for those who are taking calcium and relate our experiences maybe we can save someone from the pain and suffering we went thru. That's why this board is SOOOOOOO important. I have referred many of my friends to it just to get acquainted with the subject after they were scared to death by their diagnosis at the doctor.
I am ticked off at people like Sally Field who sell out and use their influence to get other people to do things. I'd love to know her T scores and if the Boniva helped her.
I am going to my endo on Monday. She doesn't know I took myself off the Fosamax and didn't start Forteo. I may bring in my copy of the "Myth" and an article or two which may be pertanent. I am going to tell her how after 2 years of horrible neck and shoulder pain, it went away after going off the Fosamax. This info will help her if she hears the same symptoms from other patients. But I know she will give me the same squinty eyed look that comes when someone decides for themselves their course of treatment. She'll warn me my osteo may get worse(it hasn't so far and even is slightly better)because she really doesn't have anything else to offer.
This board has taken the fear out this diagnosis and given us time to do the research and decide for ourselves what our course of treatment will be. Hearty pats on the back to all.
It's nice to know that we are not in this alone and that we are not crazy! I, too, got that squinty-eyed skeptical look from my urologist when I explained to him my symptoms from the Boniva and then the Fosamax.
I really feel that we have so much in common, most especially our thoughts and feelings. I am really so heartened to read Turquoise's words as I have so often felt that I was alone in the dark! I have questioned my stance on not taking the drugs many times out of fear. I have been railed at by doctors. I have ranted over my recent kidney stone and realizing what caused it. I have been frustrated by doctors and their lack of time both for a patient and the necessary information on drugs (other than what the company reps have to say). And, I have fumed at the drug companies. How many women have suffered with breast cancer because of HRT? And, I marvel when studies come out showing the decline in breast cancer as related to the decline in women taking HRT. It just seems like such a major DUH to me. And, I am saddened that women are victims of all of it. What scares me is what studies will come out 2, 5, 10 years from now due to the osteoporosis drugs. How many more women will have to pay the price for an exaggerated diagnosis brought on by greed, misinformation, and fear?
There have been so many times that drugs have been a vital part of mine and my families healing. But, things seem to have changed over the years. It has become more about money than it is about healing. Fear dominates every television commercial, every print ad, every pamphlet in a doctor's office. Isn't it interesting that those pamphlets are printed not by doctors or by researchers, but by the drug companies. In my urologist's office there are huge posters showing the urniary tract system. Each and every one is put out by a drug company!! I really feel that there are intelligent and caring researchers who are trying very hard to find cures. But, once their findings are presented to the board of the company they work for they are twisted and used for profit, not for aid. How sad that is. Where are the Dr. Salk's of days gone by and what happened to those people who sought to present a product for the good, not for the greed?
Thank you for the rant. I have for so long felt alone with my thinking. It is so good to hear that someone agrees, and I have noticed on other boards that I belong to that more and more women are beginning to question as they experience symptoms and read reports. I continue to use traditional medicine, but sadly now I question. It used to be so comforting to go to a doctor and follow advice trusting in the knowledge and expertise. Now, due to drug and insurance companies, doctors can not practice as they would want to and we can not trust as we should. Hopefully more and more women will continue to speak out and hopefully we can help others so that they need not experience what we have.
Thank you Turquoise and Yef for speaking out and thank you for helping me to not feel crazy. For I am truly not a fanatic - just a lady who has had breast cancer within her family due to HRT, a father with a heart attack due to arthritis drugs, and now a horrible experience with kidney stones for me.
What is a hot flash compared to cancer? What is achy joints in old age compared to a heart attack? What is mild osteoporosis compared to kidney stones? We must all continue to ask these questions and demand the answers even if just for ourselves and our loved ones. And, hopefully, soon we will be able to trust again.
Wow Glowing4, I couldn't have said things better!
I so much agree with you that I am NOT a fanatic, but sometimes, others make me feel that way because I question things. Especially, when I am prescribed LIFE LONG medication.
Thanks for taking the time to say things so eloquently.
Just realizing there are imperfections in osteoporosis (and most medical) treatment gives us the edge when it comes to making good decisions for ourselves. The medical community is in turmoil. I see it firsthand when I work prn for a friend who is a family practice doc. She has to keep looking over her shoulder to make sure the litiagion ogres are not coming to get her. I'd love to know how many lawyers are on drug company payrolls.
As far as dealing with our docs, you were right on to the fact we have to temper our opinions and beliefs even about our own bodies lest they think we are fanatics. I've worked with many docs over the years and they worse thing you can say is: "I reserached this on the web and found out...." They just don't have the time to listen and react to new information about a certain malady.
We haven't even touched on cost of treatment. Fosamax is $70-80 per month. I balked at the Forteo because of the expense. I don't have Rx insurance and $700 a month was a little steep for me especially when it's new and the results are varied. As you said, down the line, which of the treatment options will be future headlines with horrendous side effects.
With the knowlege we have shared on this board, all of us can make better, healthier decisions on how to treat our ostoporosis without intimidation or fear.
Very well said! I lost my husband 2 years after quad bypass (surgery shouldn't have been performed, they wanted to do another) Insurance paid 100,000.00 dollars...we paid 20,000.00 (insurance doesn't help much at those rates). Anyhow, during the 1970's my dad was put on drugs after having aortic bypass + renal bypass surgery which helped him to live approximately 12 more years. However, big pharma has become so unethical...new truths such as premarin, vioxx and others has made us aware that many people have no qualms as to how many human beings they are harm as long as they fill the pockets of their investors. And the commercials!....I do believe that viable drugs have been manufactured that are more good than bad. But, I refuse to go through life with blinders on...I will research everything and everywhere and try to make an informed decision; I wish physicians would do the same.
Good for you tulsatime. All of you who have written have said it so well too. I couldn't just read your post though without telling you how sorry I am about the loss of your husband. That must have been and must remain so very, very painful and my heart goes out to you.