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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by Phillipa on December 31, 2009, at 14:32:57
In a one week time period was told to either get Reclast IV or nothing. Read and investigated as was told to do reviewed labs. Decided to wait a bit longer even if costs more money as new med since 2007 and reviews lots of bad ones for osteoporosis and got a registered letter today from the doc said refused to treat me as I didn't get the reclast IV? Is this right? I'm devastated. Only wanted to research first. Am I wrong to be concerned with the bad reviews I read? Is there somewhere government like to get reliable info from? Thanks Phillipa
Posted by 2nd xylophone on December 31, 2009, at 15:17:53
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
FWIW
Posted by floatingbridge on December 31, 2009, at 15:43:35
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
Phillipa, I don't understand--your doc put a time limit on how long you could take to decide?
let me know,
fb
Posted by mtdewcmu on December 31, 2009, at 19:12:39
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
> In a one week time period was told to either get Reclast IV or nothing. Read and investigated as was told to do reviewed labs. Decided to wait a bit longer even if costs more money as new med since 2007 and reviews lots of bad ones for osteoporosis and got a registered letter today from the doc said refused to treat me as I didn't get the reclast IV? Is this right? I'm devastated. Only wanted to research first. Am I wrong to be concerned with the bad reviews I read? Is there somewhere government like to get reliable info from? Thanks Phillipa
When I want to read about a drug I start with www.rxlist.com. I believe the information there is the same as what's on the drug's label, which is reviewed and approved by the FDA. Here are the adverse effects of Reclast: http://www.rxlist.com/reclast-drug.htm
Posted by mtdewcmu on December 31, 2009, at 19:19:57
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
> In a one week time period was told to either get Reclast IV or nothing. Read and investigated as was told to do reviewed labs. Decided to wait a bit longer even if costs more money as new med since 2007 and reviews lots of bad ones for osteoporosis and got a registered letter today from the doc said refused to treat me as I didn't get the reclast IV? Is this right? I'm devastated. Only wanted to research first. Am I wrong to be concerned with the bad reviews I read? Is there somewhere government like to get reliable info from? Thanks Phillipa
You are not wrong to have concerns about the drug. It's good to be an educated consumer whenever you put a strange chemical in your body. However, that said, I think Reclast is a fairly safe drug. You have to weigh the risks of taking the drug against the risk of having brittle bones from osteoporosis. The FDA, and apparently your doctor, think osteoporosis is more dangerous than the drug. Do you want a broken hip, or crushed vertebrae in your back?
Posted by Phillipa on December 31, 2009, at 21:09:32
In reply to Re: What Would you do if doc refuses to treat no Recla » Phillipa, posted by mtdewcmu on December 31, 2009, at 19:19:57
Will check health.
Seriously no one has the right to put a time limit on the amount of time a person needs to research the med as I was told to do by the doc. I don't want a hip fracture of course. Reminds me of when cortisone new and my Mother had psoriasis worst case ever seen they presented her with this new miracle med cortisone from that came addisons disease, lead to rheumatoid arthritis, and then osteoarthritis broken back, bed rest with addrenal crisis, pulmonary thrombosis and death. I'm thinking the doc needed to have a certain number of patients be infused with the med in 2009 since they also do drug trials. Does this make sense. I advocate for my health as I did for my patients also and it's my body and I have the right to know first what goes into it. If I chose to pay the full 2600 for the infusion instead of 260 I should have that right. I want all the facts known first to weight pros and cons. Recently strotium only European brand with calcium magnesium vita D3 and K is being shown to be a great med without the horrible fevers, muscle pain, bone pain, vomiting, diarrhea, that some said they have never recovered from.
Yes Floatingbridge a time frame of one week. Love Phillipa
Posted by Phillipa on December 31, 2009, at 21:52:41
In reply to Re: What Would you do if doc refuses to treat no Recla, posted by mtdewcmu on December 31, 2009, at 19:12:39
Read the full 10 pages and so did my husband. We agree that for those that have side effects their lives change forever for the worst. Sounds effective for some but not all. I've had no fractures, and I still feel especially since no prior dosing with D was recommended by the doc something is wrong. User reviews aren't that great. And most of the improvements were after three years of treatment. So if you fall into the patients that say they will never take it again you get only positive responders in next two groups and since approval was in 2007 has anyone actually benefited? It's too soon to tell to me. Please argue and point out what I have read wrong. I'd appreciate that. Definitely no adverse consequences from calling me an idiot or whatever I will make sure of that from posting it now. Thanks Phillipa
Posted by Phillipa on December 31, 2009, at 22:09:02
In reply to Re: What Would you do if doc refuses to treat no Recla » mtdewcmu, posted by Phillipa on December 31, 2009, at 21:52:41
Please all go to health I typed the whole certified letter from the doc there. Thanks Phillipa
Posted by mtdewcmu on December 31, 2009, at 22:54:39
In reply to Re: What Would you do if doc refuses to treat no Recla » mtdewcmu, posted by Phillipa on December 31, 2009, at 21:52:41
Would you try one that came in pill form, like Fosamax? Then you could stop taking it if side effects started to emerge.
Posted by inanimate peanut on December 31, 2009, at 23:00:58
In reply to Re: What Would you do if doc refuses to treat no Recla, posted by mtdewcmu on December 31, 2009, at 22:54:39
Sorry it took me so long to post this-- I wanted to make sure I was right. My 82yo grandma had reclast with no side effects. She was taking Boniva (I think) for her osteoporosis and they switched her to the Reclast instead. No one told us there could be so many problems with it, but I guess she was one of the lucky ones. She's had it 2 years in a row now.
Posted by Phillipa on January 1, 2010, at 1:03:32
In reply to Re: What Would you do if doc refuses to treat no Recla, posted by mtdewcmu on December 31, 2009, at 22:54:39
Problem according to that doc is it isn't absorbed into the bone. The orals are osteoclasts the dead bone and they appear to make a bone density look denser but aren't after a few years they make you come off as they last l0 years in the body and it's dead bone as osteoblasts are the bone builders. Evidently my hip is the worst and the reclast targets the hip not the spine. And it bypasses the gut so better absorption. So don't know what to do as if sick no one will care for me my husband would prefer me sick. Don't ask. Love Phillipa
Posted by Maxime on January 1, 2010, at 15:49:17
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
If you have decided to take it, I would just go to another doctor to get it. If you still haven't decided, then you probably shouldn't take the med because it shouldn't take long to make this decision. You are obviously questionning the med if you haven't made your decision yet.
Posted by Phillipa on January 1, 2010, at 19:23:19
In reply to Re: What Would you do if doc refuses to treat no Recla » Phillipa, posted by Maxime on January 1, 2010, at 15:49:17
Have you looked it up yet and read the reviews. A week is certainly not enough time to research as the doc said and then decide whether you want a drug less than three years old in your body for over l0 years even the orals must be stopped after two or three years as the osteoclasts appear to make the bone denser but they are weak and brittle bones per many google searches. My own sister two fosamax and the docs took her off it after a few years protocol. No one has been on this med long enough to even evaluate the results of the three years Dexa Scans as the drug is that new. Three years is the time frame. Phillipa
Posted by Maxime on January 2, 2010, at 7:51:30
In reply to Re: What Would you do if doc refuses to treat no Recla » Maxime, posted by Phillipa on January 1, 2010, at 19:23:19
But haven't you been trying to make this decision for longer than one week? You've been looking at possibilities for a couple of months. I am sure the doctor had his reasons for doing what he did. I feel like I do not know the whole story to really take sides. I guess the most important question is what are you going to do about it? Can you go to another doctor? Were you going to say "yes" to the med, or are you still undecided?
Best of luck to you Phillipa.
Posted by Willful on January 2, 2010, at 10:03:03
In reply to Re: What Would you do if doc refuses to treat no Recla » mtdewcmu, posted by Phillipa on January 1, 2010, at 1:03:32
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 Willful on January 2, 2010, at 10:05:06
In reply to Re: What Would you do if doc refuses to treat no Recla, posted by Willful on January 2, 2010, at 10:03:03
Posted by Phillipa on January 2, 2010, at 20:19:54
In reply to Re: What Would you do if doc refuses to treat no Recla, posted by Willful on January 2, 2010, at 10:03:03
I must say no that the reason presented to me in person was that the infusion before the NY would be $260 and after the first $2600. I don't care have savings. No he has no idea I fear meds. We've never done any meds ever. As I think I said all searches bring me back to the bioidenticals but there is or are two new meds both Serms under trial as we speak which may be better. Who knows. But I'm not a fan of pharmaticals believe in the natural way and until medicinalized my term for nursing a form of brainwashing to me that meds are superior to alternatives. Before this phase in my life I took my Shakelee and occasional benzo and was fine, and ran alot. My husband said no you do not need this med or any of them now as most bone loss is the first few years after menopause and the fact that the spine isn't declining same as three years ago is encouraging to me. No not seeking another conventional doc will go the alternative route again as it works for me. Still weaning down on the benzos. And a mere 50mg of luvox. And I have a lot of further research to do. For example I wish to know the percentage of women who have Dexa Scans before a broken bone, and why after a few years the dead bone accumlates allowing the Dexa to appear as thicker bone but it's really thin worse bone. Phillipa
Posted by Phillipa on January 2, 2010, at 20:28:02
In reply to Re: What Would you do if doc refuses to treat no Recla » Willful, posted by Phillipa on January 2, 2010, at 20:19:54
Also boniva targets the spine not the hip. And the orals are not as well absorbed. The extensive testing of blood and urine was to see if my body handle it without renal shutdown. And the addition of calcium and D3 is because you excreate calcium in the urine after. And there is no antidote for reversing the med once infused that's it. Since this office does clinical trials of new osteoporosis and arthritis meds and no new trials at the moment as asked also researching if this large practice took part in the reclast trial. And the doc Lectures at Duke And Chapel Hill. Phillipa
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