Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Bisphosphonate Drugs & Osteonecrosis - law suit

Vitacost and others will deliver to Canada and stock Strontium Citrate. Try Drs Best brand and read the label

Good for you Gerri in being vigilant in checking everything due to your allergies. You are your must trusted advocate because you need to be You're right, many people don't check but we are all given drug info with the Rx and some people don't read it. And I read every bit of the humongous enbrel literature plus research studies before making that difficult decision. There are risks and it's my responsibility for taking the risk. Sure there are cases where data has been withheld or simply unknown...that is a different situation for which companies have been rightfully penalized. Best wishes in dealing with your more than challenging situation.

I agree with that Steve...we are all have to make our own decisions based on the info we have available to us and as Molly has said, these were stated side-effects and I might add that Dysphagia is an advanced symptom of AS and I have it, so I have swallowing difficulties with or without the bisphonates...now if my bis drugs would've made my legs fall off...well, then I'd be upset...

I am interested in taking the strontium citrate, just two more hurtles to go. Getting more calcium into my body when I am lactose intolerant. I comes out faster than it goes in. Vitamin D malabsorption problem. They say Strontium should be taken with Calcium and vitamin D. I am so hoping when I finally see the Endo that we can work on getting the malabsorption problems (all of them) under control.

Yesterday, I was outside - no sun - had hat on - arms covered - bad me no sun screen - and I have a rash all over. I can't say the rash was all from being outside. It could be something I ate - just so tired my body not letting me eat properly. Had UV b rays testing back in November - still have hyperpigmentation from the 1 minute test.

I so hope my Endo is going to be able to help. I want to take Strontium Citrate so bad. Like all meds I READ ALL LABELS, because no one does it as well as I do. (second nature - a must do.)

Hugs
Gerri and Makaylah

No, don't take calcium at the same time as strontium (not even milk). I take SC in the morning and calcium at night. The (link)--> Doctor's Best SC lists their ingredients here. It doesn't appear to have any of the things you've mentioned as being allergic to.

HOpe you are able to get this.

I forgot to include oversight. Might as well sue them along with the doctors. If they have ultimate authority to pull a medication off the market and don't, well they share a portion of the blame too. I just don't know how successful one would be at suing the feds though.



Sure you can try and sue your naturopath. I guess it depends how litigious of a society in which you desire to live. I don't know if such a case would have a snowball's chance in hell though, but really I know next to nothing about consumer law so maybe you might have a shot at a class action or something. I suppose this means that the individual who doesn't have a drug plan, is prescribed a couple hundred dollar medication by their doctor, suffers some detrimental side effects, and the medication doesn't work also has a case. What about the guy whose mechanic tells him to use a fuel additive in his vehicle for better mileage and the stuff doesn't make any difference? Can he sue too? What about the dentist who tells a woman that regular brushing with xyz type of toothpaste will reduce the sensitivity of her teeth to hot or cold beverages, yet fails to make any improvement despite her regular use? Can she sue too?



I'm sorry about your friend. The first time I went to a chiro there was a release to sign and it mentioned something about strokes I believe. Freaked me out. Being an AS sufferer, it freaked me out doubly. I told the chiro that, sorry, he could not do any adjustments. I had made a mistake (although I didn't phrase as such to him). He then explained to me how he could use an activator tool for adjustments. While it was no guarantee of not causing some problem or damage, it was something I was willing to try. I knew I bore all risk for unintended results.

I guess the line I draw is that I perceive fewer folks being injured or perishing through the use of treatments other than allopathic treatments. Unfortunately, I don't have any data to back this up and I'm not sure any direct comparative data exists. That is why it is a mere perception; perhaps I am the only one that draws this line. I have had quite some exposure to both and it is solely my observation. Can chiropractic, herbs, supplements, sun gazing, etc. hurt folks? Of course. However, when an injury or worse occurs under these modalities, it is receives quite some exposure because it is so uncommon or else the powers that be wish to overexpose it to make the public fearful. Why don't the thousands of injuries and deaths related from pharmaceuticals, procedures, surgeries, and hospitalizations get much public exposure? Perhaps because it is so common or the powers that be wish to suppress those numbers. We had a 33 year old cousin with IBD die about two weeks ago during a hospitalization. Likely an infection or a blood clot (autopsy isn't complete). She had a four year old boy. She will just be another one of their numbers. This would be somehow understandable if she was 83, but 33? Makes me wonder what else was really going on (e.g. immune suppressing medications?, inattention by staff regarding her status?).



I am glad that you survived childhood thanks to some sort of medication (assumption here). I don't know if they have had such a positively profound impact on my life. Sometimes they are a helpful evil. Necessary evil I'm not so sure about.

Gerri,

I'm glad that you like your ND/MD.

I have to wonder though if he or anyone else has explored some more obscure potential causes for your allergic reactions to so many items (to nearly everything!). Seems when I have read of individual's accounts of similar allergies or sensitivities to so many things, they usually state that the problem is something like heavy metal toxicity, parasites, stealth chronic infections, or some combination thereof. I wish I had some solutions for you.

Hi Snowshoe. Yes, it is at the discretion of the patient whether to fill the prescription and take the medication. I am not advocating that anyone necessarily go after the physicians, but in contrast to going after the pharmaceutical companies, this might seem more logical to me.

I have had physicians, when I queried them about the side effects of a medication they prescribed, tell me to basically ignore those, that they won't happen. I've also had a physician tell me that the problem (i.e. side effect) I was suddenly experiencing after commencement of a medication was not from the medication and that “it couldn't be from the medication”. Yet the problem was listed in the literature as a side effect. Sure seems like the physician would be liable. Doesn't make much sense to “go after” the pharmaceutical company after the physician reassured me that nothing would happen/go wrong. They must be soothsayers too!

The problem I have with the pharmaceutical companies is some of their tactics and some of their motives when you scrutinize a medication like these biophosphonates. Basically they take the approach that if oversight doesn't force them to take a medication off the market in light of serious problems or side effects, then it is OK to continue to market and sell it. Osteonecrosis (bone death) is not the same thing as something like a headache, dizziness, constipation, etc. that abates when the medication is discontinued and is out of the patient's system. Evidence continues to mount that it is seriously problematic, yet they basically look the other way. It easily makes one a disbeliever any time they speak of corporate ethics or guiding moral principles.

However, as long as there continues to be demand for such potentially destructive products (how much of that demand is manufactured is debatable), it seems doubtful that anything will change. Additionally, as long as the governing oversight bodies can be influenced (read: bought) by groups lobbying on behalf of corporate entities and doctors unions, again it is doubtful that anything will change.

As several people have already pointed out, all drugs and medical treatments have the POTENTIAL for side effects. Supplements, herbs, dietary modifications, and natural remedies also have the potential for side effects; as does doing nothing and allowing disease to take it's course. Since anything that causes a metabolic change has the potential to cause an undesirable "side effect", we all have to make informed choices everyday about what we choose to put into our bodies. We also have to make informed choices about what we chose to let go untreated. I would view with suspicion any treatment that claims to have "no side effects".

For me, and many others, the benefits of medications outweigh the risks. I have made an informed choice to treat my medical conditions with pharmaceutical products. Others have zero tolerance or tolerance only for what they perceive to be natural. That is their right. As intelligent humans, we each have the right to make the best possible choice for ourselves. We also have the responsibility to accept our own choice. If we choose medication, demanding the right to sue over side effects seems nonsensical IF the potential benefit of the drug exceeded the potential risk. If we choose only natural or alternative, we need to accept the reality of side effects** or the possibility of slower or less disease control. If we choose no treatment, we choose whatever long term consequences our disease has in store for us. What is the point of seeking the opinion of allopathic practitioners but refusing traditional or pharmaceutical treatment? I would not even dream of going to a homeopath with my laundry list of medications. Obviously they would not approve.

Although we each make choices, sometimes we do need to act on faith. I am not advocating blind faith, but sometimes closing your eyes and putting your faith in a TRUSTED advisor - whether that advisor is an MD, DO, Homeopath, Chiropractor, Shaman or Fairy Godmother - becomes necessary to live our lives. Regardless of the choice we make, each individual's perception of their individual quality of life is what is most important.


** A good example of side effects of supplements is the recent decision to stop a clinical trial of Niacin use to control blood lipids in patients at risk of cardiovascular events. The Niacin group showed no decreased risk of overall cardiovascular events, but did have an unexplained increased incidence of stroke. **

I basically agree with most of what you have said. The only thing that really stood out to me is your question about seeking the opinion of allopathic practitioners but refusing tradition or pharmaceutical treatment. Diagnosis. Really diagnosis and getting a label (the myriad of -itises, syndromes, disorders, etc.) for the ailment that would be accepted by the larger system. Just because one seeks the assessment by a medical doctor does not mean they plan to follow their recommended course of treatment. Perhaps that practitioner recommends anti-inflammatories and physical therapy. The patient may decide to incorporate a natural anti-inflzmmatory yet follow up on the recommendation of physical therapy.

It would be appreciated if you could provide some link to this study you mention at the end of your post. While it is perfectly conceivable that unsuitable use of any synthetic vitamin could have adverse results, it would be most interesting to learn more about this study, the form of niacin used, if a pharmaceutical company altered it to call it proprietary, etc. Would also be most interesting to find out how many instances of this phenomenon exists with pharmaceuticals.