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There has been some feedback recently from community members that shared with me their concern about posts on information related for osteoporosis which appears to be from a fear based perspective. It would be helpful to know the opinions of a majority of community members on this subject. Thank you. Sandi
Cancer Surgery Boniva Forteo Back pain Fosamax Reclast Vicodin Osteopenia Anxiety Actonel Pain Heartburn Norvasc Osteoporosis Evista Osteonecrosis
I hate to see someone talked out of taking a medication for osteoporosis because of their fear of the very rare side effects like osteonecrosis and cancer. Each case is different and you have to discuss it with the health professional you trust most and weigh the risks and benefits for yourself. I don't think there is anyone on this board that is qualified to tell someone what they should or should not take for osteoporosis. It is one thing to share your personal experience with a drug and quite another to share all the worst-case scenarios you have heard about a drug. I would guess that many that have visited this site have been scared out of taking a drug that may have very well improved their scores.
For example, if this board had existed 13 years ago, I would have been scared out of taking Fosamax which was about the only option back then. Well, if I had not taken it, I would not have the improved scores that I have and be in the osteopenia state instead of a more severe case of osteoporosis. I probably wouldn't still be fracture-free either, and I probably wouldn't have been able to have the extensive fusion of the spine which has saved me from a life of constant back pain. I took Fosamax for 13 years and also had a tooth extracted 2 months ago. I have had recurrent infections but I did not develop osteonecrosis which is very, very rare with oral meds. Last October I decided to take a drug holiday for a year. I will probably wait until my next DEXA scan in February to decide what I will do next.
I hope this is making sense. I am pretty tired and I'm having trouble getting my thoughts across.
Peggy
Fear and clutching at straws seems to be the these of many posts. But there is valuable information embedded in there too.
Interesting question--are there an overload of fear based (or fear-inducing) posts here? When I first started reading these posts, I walked around feeling quite depressed and anxious--more around the possible limitations to my life than around the question of medications, although I've certainly taken note of the posts on biophosphonates and other meds. But the end result for me was that this spurred me to educate myself further--and I've found my way to some excellent resources thanks to this forum--and to have a productive conversation ww/ my doctor about my concerns and what I was learning. ( And now I'm picky about which posts I read.)
I would hate to think that concerns about readers' anxiety would lead to some kind of censoring of posts. I think we all need to be responsible for critical thinking as we read the posts and assess what's right for our individual situations.
I think the topic of fear is a good one because the discussion can help everyone who participates. I was diagnosed in 1996 and my first experience was one of fear. The radiologist took me into his office and showed me two pictures, one of a healthy 50 year old woman and the second was the same women at 70 with a hunched over back. He in effect scared me just to make his point. Thankfully, I had a great woman physician at the time who explained that I did have osteoporosis and was in the "fracture zone" but she spent the rest of the visit explaining that we had lots of options. I started calcium and excercise and I started fosomax. I took this drug without any side effects for 7 years. (my scores did improve) In 2003, I had stomach surgery for a benign tumor but was not able to resume fosomax due to severe heartburn. I was so worried that I tried several drugs which I couldn't tolerate. I think the most important thing that I have learned from this process is that I can controll my fears. I am excercising, taking calcium and other suppliments and feel good. I used to joke that I could die from a broken hip or a heart attack...but now I am putting more energy in taking care of myself and into tending my garden. There are elements of fear in the pros & cons of drug therapy versus the natural approach but I would urge everyone not to panic. This site is a good vehicle for sharing and learning.
Dear Sandi:
I don't understand the concern about the fear based posts. I think most people are fearful because of their limited knowledge as given to them by their doctors. Most doctors only have time to be educated by the drug companies.
This is a support site for the lucky few who find it and take the time to educate themselves. It removed my fears and for this I am grateful. People need to realize that doctors only have limited time and knowledge and there is only very limited knowledge about the workings of bone chemistry. One size doesn't fit all.
Bottom line-Let's help the fearful and give them the opportunity to understand and be educated.
We can only speak from personal experience, surely that is what the forum is all about? Whether you take note of what people say is your own decision.
When I first took fosamax someone warned me "I was taking a poison!" I didn't listen and continued to take it for 18 months without problem. After this time I encountered side effect after side effect and eventually realised it was the wrong drug for me. I should have listened or at least taken further advise.
The point of the forum is to give a platform so people can raise these issues and then we have the choice to discuss them further with our medical practitioner or specialist. I wish I had been more aware of what I was taking before I embarked on fosamax.
People shouldn't be scared they should feel empowered by knowledge.
"Fear"
Hello all. Could I join in with the discussion? This is a very good topic!
I am not fearful of what I read here, because I know it is a person's individual story, and how it is for them.
Sometimes we are frustrated with something, perhaps it is meds, perhaps something else, maybe pain? For me, at those times, it is helpful to me to vent a little.
I have anxiety and fear between having a diagnostic test and hearing the results. In other words, the unknown. I also fear my pain, and not being able to keep it away.
I will deal with whatever I have to deal with, along with my family, but MY fear lies in the wait
Thank you all for listening.
Hi Sandi et al,
This Team Inspire is a wonderful source of information and support. After my Gyn said that I have Osteopenia (based on DEXA) and need to take Fosamax, I searched and found the following site, which scared the bejeebers out of me!
http://www.askapatient.com/viewrating.asp?drug=20560&name=FOSAMAX
My Gynecologist told me that if I don't like Fosamax, I can take Boniva, Actonel, or Evista instead. Well, I looked them up and found bad ratings with each one. For example, while Fosamax has a rating of 1.4, based on 772 patients, Boniva has 1.3, from 868 patients. ( 1 = bad and 5 = good. ) Just for reference, Vicodin is 3.4 and Norvasc is 2.5. No, I don't take these. My Dad takes Norvase and Vicodin is "famous". In fact, I don't take any drugs till now. That's why I was so fearful to start Fosamax.
The comments from our members saved me from being afraid. Thank you for sharing your experiences, e.g. Peggy (pyreene)'s success story. Our members gave me enough courage to start Fosamax. I've taken 3 tablets of 35 mg so far and do not have any significant bad side effects in the past 3 weeks. Thus, continuing with Fosamax is a possibility. I've requested a blood test, to check vitamin D level and set up an appointment to see my Primary physician next week. I will ask about Fosteum, etc., as well as what she thinks about taking bisphosphonates.
Thanks again for all the advice! I am no longer fearful, but determined to support each other so we will all have better bones!
<3 Sylvia
I have recently joined the site and i think that instead of using the term "fear" a better description of what is often the tone of posts is "alarmist". There are posts with subject lines posing questions suggesting poor medical practice, a line in full capitals urging members to not have certain tests done or go on certain meds.There is a tremendous amount of information available, and as a previous post suggests--this journey isn't a "one size fits all" scenario. The sharing of personal experience is invaluable, no doubt. Intentions are good however; I do think it is important that we do our bets to be mindful to the fact that many folks take things at face value. There is no reason to believe the experiences shared are not true or present information that is not helpful; i just think that we all need to consider the way things are expressed. The written word (aka email) is soul-less, absent of inflection and tone. Attention should be paid to how things are phrased just to make sure what the author is truly trying to convey reaches the group the way it is intended.
Thanks for reading.
D
Thank you for this discussion. I too have been fearful as many who post on this site are but over time, having read so many experiences, good and bad, it has given me strength. I think that everyone who stays with this site over any length of time can even out the good and bad, get some good information, and be able to formulate their own plan. As someone above mentioned, a lot of fear seems to come from the lack of information many practicing Drs use in their practice. Most people want an explanation, risks, outcomes to expect passed on to them and their Drs don't do this and expect us to just follow like sheep without good explanation. I have learned so much here and appreciate everyone who writes in so I can just learn of their personal human experience.
I am thankful for this site. The only thing my doctor has done for me is give me a precscription, no information period. All the info i have received has been the internet, and here. We live in a fairly small town, and no doctor is taking new patients, so I am stuck with her.
I am so grateful for coming here and getting info, or just a place to go to...
Hi sdivas:
Having been on this site for a little over two years I would agree that fear and anger is two of the predominant emotions expressed with many posts. Fear is a natural, transient emotion that needs to be converted into action to solve a problem successfully. I have been a healthcare professional for over 25 years so I have some unique insight into the healing process and the psyche of the client/patient. Here are a couple of observations I have made over the years:
1. Each of us is responsible for our own health. The decision to do anything to our bodies should be done from a position of strength and knowledge. There is no rush to Rx. Create a plan first.
2. Dr.’s are people and they have opinions just like anyone else. They also make mistakes; sometimes well intentioned, some times not. If you don’t like what you heard deep down in your gut, get a second opinion; maybe even a third. Blaming the doctor does not fix anything.
3. Your Dr. is a tool; just one resource of many that you will need to fix your health. It is unrealistic to expect too much from one tool. That is why mechanics have many tools; wrench, screw driver, pliers, etc. You will need multiple professionals to help you fix your problem.
4. Health is philosophical as well as clinical. There are different schools of thought on how the body works and how to treat it. No one school is completely correct. An easy comparison is Eastern vs. Western approaches.
5. Be careful basing your sole decision on studies or anecdotal information. Each person is unique and should be treated so. Just imagine what all those scientists think that did the studies in the 80’s about the benefits of a high carbohydrate diet. Many people followed them and they turned out to be wrong. Oops.
6. My personal belief; just like the coach says to the players on the team before the game, “how bad do you want it? If you are going to win, you got to want it real bad.”
Finally, join a support group. If you can’t find one in your area, join ours.
Hope this helps.
Woody McMahon
NOVA Osteoporosis Support Group Leader
There is too much fear mongering going on out there about any medication for any disease.
I've been taking Fosamax for over 8 years with no side effects whatsoever. I take 70 mg once a week.
It has actually helped, too. Went from -4.72 to -3.50.
Hi all, i believe we all would have had some amount of fear when first diagnosed with the debilitating disease. We wouldnt be human if we didnt feel the need to express these feelings. I have really like being about to talk about my thought and fears in these discussions. Everyone here is suffering the same thing so its normal to want to share our experiences with others that know what we are going through.
For me its all been aprt of my recovery knowing im not alone and getting alot of useful info (even though i havent taken it all onboard).
I like your reply here, Woody. I am fearful of ANY new drug since an episode of anaphalactic shock which nearly took me out. So I read extensively and try to take the least dangerous drugs...if any.
I love my Dr. and feel he is very thorough. I am not against the medical profession or even the drug companies. The fact that I have had an extremely bad experience from Reclast (debiliating pain that is not subsiding) should not make me any more or less of an expert on the drug. If you had asked me after the first infusion I would have told you it was wonderful! My experience after the second one has been the complete opposite. I am happy for those who have found good results from the variety of bisphosphonates; however, please don't discount or label as "fear mongers" those of us who haven't been as fortunate. Our experiences are REAL.
Sandi, I became a member and asked my first question within about 24 hours. I did feel like I had opened a can of worms. I got positive feedback and learned much! I felt by saying my side effects had affected one person to reconsider taking forteo. Sadly i felt. But I have also learned a lot by listening to others. Reading up on what others had said. Realizing this is a personal journey and we all must make our own decisions. This has been positive for me and there are some rocks in the way but how we choose to removed that boulder is up to us. I have learned how to remove the rocks....one by one...thank you to all of you who are on this website. I have learned ...positve and negative...but the positve out weighed the bad.
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