![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 20 of 20. This is the beginning of the thread.
Posted by 2nd xylophone on December 31, 2009, at 15:16:52
In reply to What Would you do if doc refuses to treat no Recla, posted by Phillipa on December 31, 2009, at 14:32:57
You aren't obliged to give more information but what you wrote isn't enough to go on as far as if some misdeed has happened in what the Dr. did. Was there a timeframe for a decision?
Many may jump up and down saying a doctor's refusal of treatment is not right and prehaps it isn't. But knowing how these things work - Drs. usually are well covered in their policies which most of us sign and agree to on intital visits. Some offices do have policies that cover IF treatment is being refused - I'm not saying that's your case - the Dr., Therapists, Specialists even Dentists can declare a refusal to continue to try and treat a patient.
I've only had it happen once and I was declared noncompliant, which I was and continuing was a waste of time and resources of that particular health practice when other resources were available to me.
The only way to clear this up is to contact the Dr.'s office and discuss it, imo.
Posted by 2nd xylophone on December 31, 2009, at 17:34:53
In reply to Re: What Would you do if doc refuses to treat no Recla » Phillipa, posted by 2nd xylophone on December 31, 2009, at 15:16:52
I take five different medications which are effective for me and are needed for my health. None of them have cause problems for ME. NONE - I mean NONE - of those medications received anything favorable as far as I can find in internet reportings, ratings and personal reports on support boards. I don't think you'll read much positive about much of any topic if you only go by internet searches. But what you choose to use is up to you.
Posted by Phillipa on December 31, 2009, at 22:06:53
In reply to For phillipa, posted by 2nd xylophone on December 31, 2009, at 17:34:53
Hi just finished reading the link provided. First yes a timeframe of the end of the year meaning today. I saw this doc had to go pick up the labs by self as results not sent took a week to get them. Well when picked them up told call by Monday to schedule the infusion this was a Friday. And this was last Friday. Nothing signed. No instructions just call schedule the infusion. Told might get flu like illness for three days. Then said when labs in call and we meaning doc and me would discuss the results. No I had to drive there and tackle the RN who reluctantly supplied me with the numbers for the labs and question her on her feelings of the injection. Have the letter here will copy verbatum. "Dear Mrs B. After reviewing your recent conversations with Bridget reguarding the risks and benefits of Reclast, it is clear that you do not feel comfortable using that medication. At this point our office will not schedule you to have any Reclast infusion. Additionally I would suggest that you seek another opinion from a rheumatologist or endocrinologist reguarding the appropriate treatment of your osteoporosis. We will cancel your followup visit. If you would like the names of appropriate physicians in our region, do not hesitate to contact our office. At this point we will no longer participate in your care. Sincerly docs name . With certified letter typed at the top. Phillipa So what would you do? Seriously? Thanks
Posted by 2nd xylophone on January 1, 2010, at 6:29:15
In reply to Re: For phillipa » 2nd xylophone, posted by Phillipa on December 31, 2009, at 22:06:53
> So what would you do? Seriously? Thanks
If you are asking what I would do as far as treatment, I would have myself treated with that med if that became an option for me and was deemed appropriate for my particular ailment.
If I misunderstood your question let me know. I'm not sure if you are asking about the Dr.'s letter or the medication.
Posted by Phillipa on January 1, 2010, at 12:38:45
In reply to Re: For phillipa, posted by 2nd xylophone on January 1, 2010, at 6:29:15
Both sorry computer went down last night. Seriously not being anything but curious but why would you infuse something into your body that there is no antidote if an allergic reaction occurrs or your're like a lot of the poster reviews on the provided like. Why have bone pain, muscle pain, flu, fever and have a foreign substance in your body for years and years and as far as I know if the med is used for three years and approved in 2007 there wouldn't be followup bone scans to show improvement would there? And also the doc said he was done with me. The doc is the best in the area and how can you reject a person with only one week to make up your mind and do the suggested research? Why didn't I get to talk to the doc and why no loading dose of calcium and vita D? I've really devasted. Thanks Phillipa
Posted by hyperfocus on January 1, 2010, at 13:49:35
In reply to Re: For phillipa » 2nd xylophone, posted by Phillipa on January 1, 2010, at 12:38:45
It's your right to investigate and ask question about any medical treatment. You're right that the doctor probbly has an exernal requirement for treating patients using RIV. Maybe he quit becuase he knows the treatment is problematic and you would be one of those patients who would speak their mind and be vocal and visible about the negative effects. If your doc quits on you becuase you don't want to be a guinea pig for a new treatment, count your blessings and find a new doc
Posted by 2nd xylophone on January 1, 2010, at 15:05:26
In reply to Re: For phillipa » 2nd xylophone, posted by Phillipa on January 1, 2010, at 12:38:45
Your reactions and feelings are fine and if they are valid for you that's fine. I simply don't feel the way people here seem to feel about medications which is why my views are very not popular. :) I'm not going to go into why I would accept getting that medication except to say I would and I'm not uninformed and living in a dream state.
I would not want you to get into a lose/lose situation. I too have anxiety problems and have had specific phobic reactions to things. The thing with me is - I'm going to dwell and worry if I DON'T treat something about myself that I feel needs to be treated AND I'm going to dwell and worry if I DO treat it. I have improved with that and it's better I treat - the dwelling and worry decrease for me and aren't as longstanding as when I DON'T act on a problem.
What thought processes work for me may not be appropriate for you or anyone else but fear is THE killer of life for me as is overthinking EVERYTHING to an overwhelming degree. I realized fear was the big issue - just something for you to think about is - Does this problem REALLY have this medication at its core or would it be almost any medication? Does the Dr's letter represent a true health crisis of ethics to you or does it feel like a rejection going deeper? I'm not sitting in judgement - I'm just trying to make you think a little which you can accept or throw away. :)
Posted by Maxime on January 1, 2010, at 15:51:48
In reply to Re: What Would you do if doc refuses to treat no Recla » Phillipa, posted by 2nd xylophone on December 31, 2009, at 15:16:52
> You aren't obliged to give more information but what you wrote isn't enough to go on as far as if some misdeed has happened in what the Dr. did. Was there a timeframe for a decision?
>
> Many may jump up and down saying a doctor's refusal of treatment is not right and prehaps it isn't. But knowing how these things work - Drs. usually are well covered in their policies which most of us sign and agree to on intital visits. Some offices do have policies that cover IF treatment is being refused - I'm not saying that's your case - the Dr., Therapists, Specialists even Dentists can declare a refusal to continue to try and treat a patient.
>
> I've only had it happen once and I was declared noncompliant, which I was and continuing was a waste of time and resources of that particular health practice when other resources were available to me.
>
> The only way to clear this up is to contact the Dr.'s office and discuss it, imo.
>
>I have to agree with the above. If seems like you have been taking a long to decide what to do because you have been posting about this since November, maybe earlier. Sometimes you just have to take a leap of faith and try something.
Posted by Phillipa on January 1, 2010, at 20:24:30
In reply to Re: What Would you do if doc refuses to treat no Recla » 2nd xylophone, posted by Maxime on January 1, 2010, at 15:51:48
Talking about osteoporosis since found out in November saw three docs this one being first osteoporosis and osteoarthritis doc who also did my lymes testing when moved here. Saw him as my new results of lymes test I requested from PA came back positive again. And he had my chart. And previous results. Lymes is an issue that had been put to rest for me. He also did work at Yale in the lymes clinic years ago. So he did another bone Dexa Scan said he expected to see a train wreck after what the orthopedic doc said but didn't just some mild scoliosis and my spine was the same as the last Dexa he himself had done on me. Dexa Scans should be done on the same machine found that out in researching. Hence the two scans differed a lot. He wasn't concerned with spine just hip so said the reclast targeted the hip. Said I won't charge for second Dexa Scan. He did numerous blood testing and 24 hour urine to see if my kidney would not fail with this med as kidney excretion of calcium. Appointment was Dec 17th had Greg check on calendar. Then the blood testing. No results were sent to me as the doc wanted me to review and research the med and said had to schedule before end of month. So a week ago we literally drove to the office and got the results. At that time had to literally beg the RN to talk about the med as the Iv lab the infusers knew nothing about the med. The doc had said we will discuss the med before scheduling and go over labs this never happened. Saw the RN and received the labs last Friday and was told to call on Monday by RN to schedule infusion. Two days to research????? I think not. No doc I've ever ever seen pdocs included ever set a time frame on deciding if wanted a med. I'm very through having done malpractice for nursing and testifying in court so I know how to research. I have three books in my room at this time all new additions on osteoporosis and all lead back to hormones and lack of estrogen, progesterone and testosterone. Concensus of the real live people I know is they would never take the med without researching. Too much at stake. Some who worked and were well prior to the infusion now are on bedrest. One study found today on FDA site said I think it was 538 had died from the med and hundreds hospitalized. This is a med for bone mets also and Pagnets disease. I would not be an advocate of my own health care if I did the opposite of what taught to teach patients when in school. So it's possible the hormones are my best option. When done researching will report back. Uh uh two days with labs and no second consult with the doc doesn't sit right with me, husband, family. Love Phillipa ps also stopping the med isn't possible as it's in your system for over l0 years, atrial fib is also a frequent side effect, and was told that a lot of the infusion nurse's work for the drug company. And also massive amounts of D3 and Calcium with lots of fluids are protocol and this protocol was not discussed with me.
Posted by Willful on January 2, 2010, at 10:06:43
In reply to Re: What Would you do if doc refuses to treat no Recla » Maxime, posted by Phillipa on January 1, 2010, at 20:24:30
You've been researching the bisphosphonates since at least November 12th, and were aware of the issues with them since last January--when you posted a link on them.
So Maxime makes a good point, Phillipa. Reclast is another of these class of drugs; and the issues that trouble you are the same ones you've mentioned since the beginning of the discussion a few months ago.
There are no perfect answers at the time to osteoporosis. Let's hope better treatments are upcoming. For now, I urge you to get fosamax, or one of the oral bisphosphonates, because it would be less frightening and the side effects tend to abate fairly quickly in most cases. You could go with actonel, because my mother's doctor said it was a least strong, and Fosamax was the strongest. Or you could use Boniva, which is taken once a month, rather than Fosamax which is taken every week. Or go back to Reclast, which after all, you only need to think about once a year.
All of them are good for the hip-- and it's probably safer imo (and of course, I'm not a doctor) to protect your spine because you wouldn't want that to become a problem. Fosamax and Boniva have both been shown to be active in hip and spine.
I don't want to hurt your feelings, Phillipa, but from your excerpts from the doctor's letter, he become unwilling to treat you because of the depth of your fear of the meds. He may have felt that you weren't ready to take them at this time-- he didn't feel comfortable in further coercing you. He may have given you a deadline because he felt that it would help you to go ahead.
I'd also like to point out that despite your confusion, you're capable of making well-informed choices, and are a highly intelligent person. Where you get into trouble is with fears about bad outcomes-- . But I'm sure you know this, too. And again you're focusing on the fearful side effects and magnifying whatever criticisms there are of the drugs' effectiveness and not listening to the reassurances about their helpfulness-- about which there is much reliable science--
This is driving you to distraction and preventing you from taking good care of yourself. No doctor can promise you that you won't have the side effects. You, like my mother, need to figure out how to bite the bullet and have a needed treatment-- and how to focus on the potential good, not the potential (low-probability) bad.
I've noticed in scanning your posts lately, that you know tremendously more about these meds than any of us whom you're consulting. The time for research and consulting friends, neighbors, and pbabblers is over. This is not about information-- this is about making a decision and going through with something that's scary.
Actually I have confidence in your ability to make the best decision for yourself and to move forward with the treatment. I'd like to support you in doing that. You know more than enough. Once you make up your mind-- I"m sure you can find a doctor who will treat you totally appropriately.
Willful
Posted by Phillipa on January 2, 2010, at 11:14:50
In reply to Reclast, repost, posted by Willful on January 2, 2010, at 10:06:43
Mind made up. I was reading the three books last night and the outstanding fact was after a few years you must discontinue as too much dead bone builds up and the body needs time to clear it out which takes a few years. The books questioned the reason for taking the meds just because of this fact. They said okay so now you have to discontinue so what happens to you now? If I could afford it the best option for one year max is Forteo. But costs thousands of dollars given by injection by self in abdomen. But it can lead to cancer hence short use. But it's the only one that actually builds new bone osteoblasts. So probably will continue on vita d3, calcium, vita k, and magnesium and contact the bioidentical hormone doc. Been holding off on that til research complete. As for the research I started researching oral biophosphinates in November didn't know IV available till that December appointment with the osteo doc. So then started researching the Reclast. Came to same conclusion as you that if any has to be oral also. So it's still up in the air. I have a valid prescription for fosamax. That's from internist who listed on paper options as fosamax, evista, or nasal calcitonin. So that's where its at. Phillipa
Posted by Phillipa on January 2, 2010, at 11:53:54
In reply to Re: Reclast, repost » Willful, posted by Phillipa on January 2, 2010, at 11:14:50
Also any link I may have posted a year ago wasn't about me was probably from a nursing newsletter that thought might be of interest to babble community. also this whole thing started from going to plastic surgeon to question back pain two years after tummy tuck when it started the pain this is. He in turn sent me down the hall to the orthopedic doc. Who x-rays back said bones of l00 year old and go on fosamax asked for a RX he refused said no got to see your internist as I don't treat it. So the internist who did first dexa scan and prescribed the fosamax. Letter by mail with prescription and choices listed above. Meanwhile I'd had lymes retesting done by PA at pdocs in another city and since this osteo had treated lymes when retested after moving here decided to see him hence the repeat bone scan and the reclast came up. Long time and three doctors later. Too much stress. So since I'm physically active with excercise will continue. As for my neighbors they admit they have no idea what their meds are or what they do just say the doctor said take this. I'm an informed consumer. And boy am I glad I never took the vioox that was prescribed for me over l0 years ago for back pain herniated disc at time. Now it's off the market and in litigation. Phillipa. My advise is "buyer beware".
Posted by Phillipa on January 2, 2010, at 21:57:10
In reply to Re: Reclast, repost, posted by Phillipa on January 2, 2010, at 11:53:54
Just sent more info. Phillipa
If you have several bone health risk factors, or a few strong factors, you may be concerned about your bones ability to stay strong throughout your life. And given the potentially debilitating consequences of fractures physically and financially its no wonder youre anxious!But understand this: you may have the same bone density and fracture risk as another woman, and one of you will fracture and one of you wont. So what accounts for these differences, and what can you do to improve your bone health without taking a drug?
Its simple: The presence of risk factors doesnt determine whether or not you will suffer from weak bones, but how you respond to those risk factors does. So take control of the factors you can change, and start building better bones.
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Posted by Willful on January 3, 2010, at 18:29:28
In reply to Re: Reclast, repost, posted by Phillipa on January 2, 2010, at 21:57:10
My problem is that they're trying to sell something. Susan Brown is selling books-- and for all I know other things. I can't really find out much about the source of her knowledge about osteoporosis and the value or non-value of bisphosphonates. She seems to have a phd in anthropology.
She hasn't done any experiments to back up her speculations-- and while they might be interesting to test, I couldn't base any treatment on her theories.
It seems a bit contradictory for people to have such cynicism about the motives of doctors and such trust in people who have "alternative" theories but no evidence. It's not as if these people have no agendas-- or that their motives are pure compared to doctors. Maybe some doctors are too influenced by big Pharma, or are naive about the medications they use-- but I find that there's usually some science to back up what they say. Perhaps the science isn't totally correct; and doctors differ. But at least they try to test their meds-- and there are lots of scientists looking at these meds. It seems much more persuasive than the theories of people with either no training in medicine, or no scientific evidence whatever to back up their products and claims.
When you look into it, they generally have something to gain from scaring people about standard medicines.
Willful
Posted by Phillipa on January 3, 2010, at 20:24:16
In reply to Re: Reclast, repost, posted by Willful on January 3, 2010, at 18:29:28
I know that. It's a popular website that a lot of women subscribe to. This one post was sent to me by another babbler or former one. I'm not taking these meds my decision is made. Based on all the evidence I've collected. Some from a former drug rep for evista. Different med and mode of action. But never the less that one is a SERM and two new Serms are in the pipeline now.Interesting also that tamoxifen for breast cancer also is a Serm. Now we're talking powerful meds. Those I found myself. There are quite a few boards no selling that have posted their personal experiences with reclast and their purpose is to just let others know how their lives were changed by taking the med. Real people like babble. Sites on either the med or biophosphinates or osteoporosis treatments. Why not read their experiences too. And I still haven't found out which docs took part in the clinical trials. Since this one is part of the osteoporosis society I imagine he's involved as I said they do clinical trials. My body my choice. Phillipa
Posted by Willful on January 3, 2010, at 21:02:26
In reply to Re: Reclast, repost » Willful, posted by Phillipa on January 3, 2010, at 20:24:16
I'm not trying to persuade you to take the meds. I wouldn't want you to change your decision.
I'm worried that people may read the websites that I went to, which seem to be dominated by people who've had a bad experience, or by those who are extremely afraid of bad results of which there are very low odds. Often people who've had bad experiences post what's happened; those who get a benefit from the med and are involved in their lives don't. So some of these websites create an environment of fear and avoidance.
Perhaps these experiences are important to know. But they're anecdotal. And they do give what may be a false impression to readers about the value of certain drugs. I just wanted to give another point of view for others.
I"m glad you've made a decision and are confident in how to handle the issue. I'm not in any way trying to get you to change your mind.
Willful
Posted by Phillipa on January 3, 2010, at 22:49:07
In reply to Re: Reclast, repost » Phillipa, posted by Willful on January 3, 2010, at 21:02:26
I guess we went to other sites as the ones I went to were official drug sites. No decision made. Hey when you can only use the med for maximum of three years makes sense to wait till you really need them after a fracture or in old age. If I see any great sites will Post. Others feel free to no think sites are biased by googling on own. Might try reclast positive experiences. Or experiences. Or biophosphinates. Just don't go to the lawsuit for osteo necrosis of the jaw as in litigation with Vioox at the time. Now that one would definitely scare a person. Phillipa
Posted by Phillipa on January 3, 2010, at 22:51:41
In reply to Re: Reclast, repost » Phillipa, posted by Willful on January 3, 2010, at 21:02:26
Word is not be biased til reasearch if so inclined on own. Sorry typo. Phillipa
Posted by Phillipa on January 3, 2010, at 23:08:06
In reply to Re: Reclast, repost, posted by Phillipa on January 3, 2010, at 22:51:41
Well here's one I didn't find google search was reclast positive effects. Phillipa Looks like it was done just as reclast was awaiting release.
Osteoporosis drugs - Fosamax, & Reclast - could affect heart
--------------------------------------------------------------------------------
From: "california_chief" <Fire_Chief@xxxxxxxxxxxxxxxxxxxxxxxxx>
Date: Fri, 4 May 2007 23:05:47 -0700--------------------------------------------------------------------------------
Osteoporosis drugs could affect heart
Two studies link irregular rhythm to Fosamax, Reclast
May 3, 2007BOSTON - Two research reports suggest a possible link between two
bone-building drugs and irregular heart rhythms in a small number of women
who take the medicine.The signs of a problem were more pronounced with Reclast, a drug made by
Novartis AG and given through a once-a-year, 15-minute intravenous infusion.
But there was a hint of similar trouble in a few women who took the leading
osteoporosis pill, Fosamax by Merck & Co.The two drugs are in the same class.
The safety question caught researchers by surprise. While uncertain how big
a worry it might be, they agreed the overall risk is small.Specialists said women at high risk for bone breaks - the main target of
these osteoporosis drugs - should keep taking them as prescribed.But several experts said they'd be cautious about those who are also at
risk for a condition called atrial fibrillation, an irregular heart rhythm
that can cause strokes.The two separate reports published today in The New England Journal of
Medicine point to elevated rates of serious episodes of that heart condition
in women who took Reclast and Fosamax."For the first time, there may be a side effect," said a researcher
involved in both studies, Dr. Steven Cummings of California Pacific Medical
Center Research Institute. "Until now, people have assumed Fosamax was
completely safe and could be given to almost anybody," Cummings said.Fosamax, the brand name for alendronate, is now used by an estimated 1.8
million American women. In a letter to the medical journal, Cummings
reported evidence of the heart problem found in a recent review of a 1997
Merck-sponsored study of postmenopausal women on Fosamax.There appeared to be 50% greater risk of the serious heart rhythm in women
who took the daily pill than among those who didn't take it. About half of
the 6,459 women took Fosamax, and 47 developed atrial fibrillation, compared
with just 31 cases among the other women.However, the finding, while not statistically definitive for Fosamax,
worried some researchers because it is in line with the results of a new
study published in the same issue of the medical journal.This study of 7,736 postmenopausal women with osteoporosis focused on
Reclast. Novartis recently won approval to sell Reclast, known generically
as zoledronic acid, for Paget's disease, another bone condition.The company hopes to get approval later this year to sell it for
osteoporosis use.The new study, funded by Novartis, shows that Reclast works at least as
well as existing drugs in the same class, researchers said.However, the risk of a serious case of irregular heart rhythm was more than
double that in the other patients ? 50 cases in the drug-taking half,
compared with 20 cases in the others.
Posted by Phillipa on January 3, 2010, at 23:30:42
In reply to Re: Reclast, repost » Phillipa, posted by Willful on January 3, 2010, at 21:02:26
Four in a row sorry but this is the best of the best as the positive reporting to the national osteoporosis board. At least the members find it positive. So much drug money. Phillipa
This is the end of the thread.
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