Confusion at the Vitamin Counter-Folic Acid-Others

Blundin2005 · November 2007

Good Morning all,

I just woke up and I'm already thinking again to this question. My DH just walked by and sighed when he saw me back on the computer (lol). We're packing and leave tomorrow for our trip! So this will be quick...

BBS- thanks for the link to Vit D source and the doctor's research.

Following my thought of RDA requirements for "healthy" bodies......I was wondering how much of this research for Vit D is of young "healthy" and how much of old "geriatric". Joan said rightly I think that cancer then HT (Arimidex, etal) has made 90 year old women of us all by estrogen depletion standards. So possibly our requirements for these vitamins and supplements certainly would be much different "than the average bear!"

Rosemary- your cadavers spawned the thought in me that if cancer cells (and probably other maladies) dine on b-12 and magnesium, then it is logical that we would be depleted of these? Look at the success they have treating sickle cell anemia with magnesium. The question follows then how to restore the balance without inviting the cancer cells to dinner? Or, even if balance is not possible to restore...supplements are then key to remaining a "sustainable resource" around here. Maybe I missed this somewhere here before .... I'll go back and read some more. Forgive me if I'm being repetitive.

A thought about the NIH .... I remember in my younger days typing research papers for the docs. I asked them about funding by the NIH and how it was decided. My thinking then that the NIH was a "wonderful" organization. However, several of my favorite docs commented that it was staffed with political appointments and that research funding was not based on medical priorities as much as personal priorities. I realize that sweeping statement may sound sour grapes....but I had much respect for these docs and expect that they were right.

OKy doky then ... gotta run.

Rosemary44 · November 2007

Marilyn

I wouldn't know if we'd be suffering from a deficiency cause we don't know how much of a certain vitamin a cancer cell likes to take up. It might just need a tad more then our other cells. I wish we could figure out a way to get our immune system kick started to see a cancer cell as the enemy.

Rosemary44 · November 2007

Pat,

If I don't see an improvement over my last dexa, I'm going to find a Dr. that does bones for a living. My Onc prescribed Actonel and he really doesn't do any follow-up. I have to remind him it's time for another dexa. I'm not sure how good your Gyn is but if we have an on-going problem that isn't getting any better, maybe we should find someone in the know. I don't even know how long I should be taking a break from it to see if my vision improves. I think the Dr.s would do us a big favor of giving us a referral to a specialist instead of writing a prescription right off the bat for a field they might not know anything about. Are you going to try the 3 cups of green tea daily? I saw where you wrote that you take fosamax but I must have had actonel on the brain.

Oh, I wanted to add, the Dr.s office I go to for the dexa scan, he's a regular MD with a machine in a room, they don't even check my height. I have to ask them to do it. Losing height is a biggie with this disease. Save us.

pconn03 · November 2007

Rosemary:

That's exactly what I've been thinking - if there is no improvement (or a worsening - which I need to find out) then why am I taking it. Six years is a long time . . . I'm going to go to my Gyn and have a talk with her about it, I think. Try to get some answers. What type of doctor would be a specialist in bone denisty I wonder. Orthos know how to fix them and replace them but not sure beyond that. Tell me about the 3 cups of green tea - is that supposed to help with bone density? I have some that I bought awhile ago but have not been consistent with drinking it. I sure can do that though - simple enough.

Again, Rosemary and you other ladies for all the great information and resources you bring to these boards!!

Hugs,

Pat

Anonymous · November 2007

I don't remember reading that only green tea is supposed to help with bone density. I think I did read that herbal tea doesn't. So, does black tea also help?

Pat, it is my understanding that an endocrinologist is the doctor one wants to see when one has osteoporosis. Just have to find a good one. Undecided

Shirley

Rosemary44 · November 2007

Shirley, Yes, black tea and green tea were two of the teas the ladies were drinking, I forget if there was a third one.

Pat, Shirley is right again, it's an endocrinologist. They do thyroid, bones, and other gland problems. Also height problems, I'd like to be 5'6". It's never too late.

saluki · November 2007

Rosemary-As soon as I restarted the Boniva I noticed problems with eye discomfort as well as a difference in my vision.

Rosemary44 · November 2007

It's a scary alert. I'll be going to an eye Dr. for sure, and it might have nothing to do with Actonel. I'm not even sure if an eye Dr. is on top of this alert and he declares my eyes with some kind of glopida-glopida disease and wants to operate, and meanwhile it might heal itself once off the drug.

http://www.eurekalert.org/pub_releases/2003-03/ohs-ori032003.php

abbadoodles · November 2007

Are you ladies taking magnesium at half the dose of calcium???

Tina

pconn03 · November 2007

Rosemary, Shirley and all:

Thanks for the info on the tea and the endocrinologist . . . my primary care doctor sent me to an endocronologist about 6 or 7 years ago to have him check something on my thyroid - nothing. I've taken synthroid for about 33 years now so now I know he would be the one for bones as well.

Rosemary, regarding the blurry eye thing - I know what you mean b/c I know I have cataracts so maybe (??) that's the problem. Wow, always something to figure out, isn't there?

I'm so glad you ladies are there - together we can conquer it or at least help each other try to figure things out, right?

Hugs,

Pat

saluki · November 2007

Rosemary, - I remember posting some info from Letters to the editor section of the New England Journal of Medicine by some Ophthalmologists (I think the same year your Eureka Alert is referring to), sounding the alarm about eye problems and bisphosphonates on some support forum started by some Doctor who briefly appeared on the BCO support groups years ago--Can't remember the name of the forum???

Don't know how much attention was paid to this because it was hidden in the letters to the editor section.

I know no one had a clue about Fosamax when I had Lasik done. Lasik causes dryness and if you have dry eye they won't do the procedure.

Here is a little more elaboration about the eye issues.

----------------------------------------------------------------------

DRUG-RELATED ADVERSE EFFECTS

OF CLINICAL IMPORTANCE

TO THE OPHTHALMOLOGIST

PART I & PART II

F. T. (Fritz) Fraunfelder, M.D.

Casey Eye Institute

Oregon Health & Science University
Bisphosphonates - Pamidronate disodium (Aredia®), Alendronic acid (Fosamax®), Ibandronate, Zolendronate (Zometa®), Risedronate sodium (Actonel®), Clodronate (Bonefos®), Etidronate disodium (Didrocal®), Olpadronate

Primary Use: Pamidronate disodium (3-amino-1-hydroxy propylidene, disodium salt pentahydrate) inhibits bone resorption in the management of hypercalcemia of malignancy, osteolytic bone metastases of both breast cancer and multiple myeloma, and Paget’s disease of the bone.

Clinical Importance/ Ocular Concerns: This class of medicine has been reported to cause anterior uveitis and nonspecific conjunctivitis. There are case reports of episcleritis, nerve palsy, ptosis, retrobulbar neuritis, and yellow vision. We previously reported a case of anterior scleritis and a case of posterior scleritis associated with pamidronate use, without rechallenge data. The most studied drug in this class, pamidronate, has caused seventeen cases of unilateral scleritis and one case of bilateral scleritis usually within 6 to 48 hours after intravenous use. Six patients had positive rechallenge testing with the scleritis occurring after a repeat drug exposure. Other ocular side effects with positive rechallenge data, associated with pamidronate disodium use, include: blurred vision, nonspecific conjunctivitis, ocular pain, bilateral anterior uveitis and episcleritis.

WHO Classification:

Certain

Blurred Vision

Ocular Irritation

Nonspecific conjunctivitis

      Pain

      Epiphoria

      Photophobia

Anterior Uveitis (rare – posterior)

Anterior Scleritis (rare – posterior)

Episcleritis

Probable

Periocular, lid and/or orbital edema

Possible

Retrobulbar neuritis

Yellow vision

Diplopia

Cranial nerve palsy

Ptosis

Visual hallucinations

Guidelines/ Conclusions: This is the only class of drug proven to cause scleritis. Bisphosphonates can cause vision threatening diseases, which may require discontinuing the drug in some uveitis cases and, in this series, all cases of scleritis. Further guidelines are as follows:

               1. If persistent decrease in vision or ocular pain occurs, the patient should see an ophthalmologist.
               2. Nonspecific conjunctivitis seldom requires treatment and usually decreases in intensity or may be absent on subsequent pamidronate injections. In rare instances, a non-steroidal anti-inflammatory eye drop may be needed.
               3. Bilateral anterior uveitis or rarely posterior or bilateral uveitis may occur and can vary markedly in severity. Many cases required intensive topical ocular or systemic medication. In some instances, the drug may need to be discontinued for the uveitis to resolve.
               4. Episcleritis may require topical ocular medication, however pamidronate may be continued.
               5. In this series, for the scleritis to resolve, even on full medical therapy, the intravenous pamidronate had to be discontinued.

I know I've been remiss in having my eyes checked, ---but one bisphosphonate issue at a time--I just finished with my oral surgery debacle. LOL

Rosemary44 · November 2007

Thanks Susie,

I see that this issue has been around for awhile but it doesn't make headlines. As long as the eye Dr's know about it because I hate educating them, some of them have sky high egos and if we know something they don't, they make it seem like what we know, or the report we're reading from is nonsense. My Onc does that. He's learned well how to shut down all levels of communication with this patient. Just call everything nonsense.

Tina,

Yes, Mg is half the dose of calcium. Are you going to take them together or apart? I've been trying to take them apart. What a pain to remember.

Pat,

I'm going tomorrow for my annual bone scan, and I'll see if any of what I was doing is working. One thing I noticed since stopping the pill is less heartburn issues. I can even bend over to pick something up without coming up with auto heartburn. We'll see how it goes.

I'll be interested in hearing from you about what your gyn has to say about taking a break from it.

Rosemary44 · November 2007

Back to the confusion issue over vitamins. My sister called me to report that the Bottom Line, which is a newsletter, has a list of vitamins not to take, so she's going off some very needed vitamins. I just got her talked into taking some of them and bingo, this happens.

My husband brought me a list from the dentist office as a hand-out and it listed 10 vitamins not to take, vitamin C was one of them. What is going on out there? Who's behind this sudden call-to-arms against vitamins? I'm suspicious. Some I can see, such as folic acid, if they found something new, let's hear about it. But this is almost an assault. We'll have to use our own common sense about this.

Blundin2005 · November 2007

Ferhenheit 451. That's what came to mind after I googled "Vitamin Ban"....and started to speed read through the list. I remember now our thread a couple of years ago here when the FDA first presented the "control" of vitamins. Ahhh now I understand why the Vit D research is everywhere...boy was I a sap.

And EU is following suit! This is really upsetting..... they met in Germany and Rome....my own back yard! You'll find the UN's Food and Agricultural Offices (FAO) there. Sure, when the Europeans, So. Americans, Africans, etc. were "merely" peasant farmers, no one gave a damn....they made great National Geo films and tourism ads....but now that our limited resources like food and energy demand are out-stripping supply...well...now we're talking about a multi billion dollar/euro "market"....the hell with feeding the masses....it's feeding the borse ... I'm sorry, the stock market....that's become more important!

My son said that supplement control, and cloning, and fruit and vegatables produced without seeds for "control purposes" is the natural evolution of life here on our planet...the financial analysist will even go as far as to say it's "organic" business development. No, my sons don't "like" it...but accept reality...the post 9/11 era....where even food is used as a weapon of mass destruction.

So let's see now....that would be the movie with Uma Thurman many, many, years ago .... she represented "perfect" DEA and fell in love with a guy who was conceived the old fashioned way..."a love child". But he needed to hide the fact in order to be accepted to the space program...he was "imperfect" DEA and that was culled out ... he had asthma. Get the picture?

Pharmco is my worst nightmare...I saw it coming to Europe and it seems there is nothing to stop the momentum. I'd like to see the cost/benefit analysis in human terms here....I imagine that the analysis would be presented by the likes of the Carlyle Group....I can think of several politicians currently "capitalizing" on this issue as we speak. Errrrggghhhh!

Sorry for the long rant .. and the O/T....but not so off topic....how the hell can we take care of our bodies if they take away our tools to do so. As far as I can see, "they" thus "we" (through elections and blind eyes) have bankrupted ours and the world economy and health "for the greater good"! Who's good would that be again?

Now, will someone come here and shine some positive light on this .... if you are you going to say regulation and controls bring quality? That dog just don't hunt (as one of my doctors was fond of saying). If you want empirical evidence look to the ranking of the US health system in the world by the World Health Organization.

They better not come to my balcony and take my plants of mint, oregano, rosemary, sage, basil, tomatoes, aloe.....I'll want to become "Granny" from the Beverly Hillbillies ready to run off those agents from my land!

So...had my morning coffee and now it's time for a shower then off to shop at Trader Joe's or Whole Foods. I'll remember to take me vitamins and magnesium...the jet lag is rough.

Best wishes to you all ladies...