Could Use a Bit of Advice

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Joefnh
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Could Use a Bit of Advice

Post by Joefnh »

As I have been dealing with the spinal issues these past months I have been on methylprednisolone or Medrol 12mg for the past 5 months. Recently as I have been on this form of prednisone for the past almost 6 months, I had a DEXA scan about a week ago and did just receive the results which showed osteoporosis in the lumbar region and osteopenia in the hips. This is due to the prednisone over a long period of time. Right now the only other option to stop this disease from progressing and affecting my ability to walk is Humira, one of the TNF meds

As I really do not want to start taking another medication, I am looking at addressing this with supplements alone. I know that I have read I believe here about the best mixtures of calcium with other minerals to get the best absorption. I am already taking vitamin D 10,000 IUs a day, what else would be recommended.

Is there a recommended combination of calcium and other minerals to take together to insure the best absorption??

Here is a copy of the test report, if anyone has any idea what the numbers mean in relation to the measurements that would be useful information.


DEXA test report:
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Joe
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wmonique2
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could use a bit...

Post by wmonique2 »

Hey Joe,

I get dizzy when I read your posts...so much going on in your life...sorry, man.

Anyway, If I remember correctly from my therapeutic nutrition classes in college. The ratio in calcium/magnesium is 2:1. Calcium citrate is best and take half as much magnesium. Also, don't take it all in one swallow. Absorption of calcium is no more than 400 mg at a time. Spread it evenly throughout the day and before bedtime. It will help you sleep as well.

I haven't researched how much you'd need, but I take 1200mg calcium a day. Sometimes people add vit D for better absorption.

Take care and wishing you the best,

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Post by nancyl »

Joe,
I was told by the owner of a wonderful health food store in NJ that AdvaCal by Lane Labs was very good, also Bone Up by Jarrow. I ran into a problem several years ago with thining bones. The doctor wanted me to take Fosamax, I asked to hold off and began taking AdvaCal. After my first 2 years bone check it was better. No one has ever suggested Fosamax since then. Of course walking and working out has helped a lot too. Also, he recommended Vitamin K, I take Super K with Advanced K2 Complex by Life Extension. That is also when I began taking Vit. D. All to help with absorbtion of the calcium.

Weight bearing exercises can really help, but I'm sure that is not easy with your back issues at this time.

Nancy
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tex
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Post by tex »

I see the report calls for the immediate "initiation of antiresorptive drug therapy". That would be a bisphosphonate. That sounds like bad advice, so I assume that this is the drug that you are trying to avoid. Isn't your doctor aware of the problem you had with your jawbone? Surely he's aware that bisphosphonates are notorious for causing that exact problem.

I agree with your plan. If the bisphosphonates are so great, why do doctors always recommend weight-bearing exercise, calcium and vitamin D supplements, etc., along with the drug treatment? Because the weight-bearing exercise and calcium and vitamin D supplements are what provide the benefits, and the bisphosphonate is just along for the ride, trying to grab all the glory, when in fact, all that it's doing is making bones brittle.

IOW, I agree with Monique and Nancy.

Tex
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Post by desertrat »

Joe,

I am a big fan of Metagenics Cal Apatite with magnesium. Metagenics is a rather expensive brand, but I always believe you get what you pay for, especially when it comes to vitamins. Here is a breakdown of the Cal Apatite:


Cal Apatite with Magnesium is the same formula as original Cal Apatite, but with the addition of 300 mg of magnesium per serving. Cal Apatite is a comprehensive bone support formula featuring purity-certified, calcium-rich microcrystalline hydroxyapatite concentrate (MCHC), a complex crystalline compound composed primarily of calcium, phosphorus, delicate organic factors and protein matrix, bone-derived growth factors, and a full spectrum of trace minerals that naturally comprise healthy bone.


MCHC as a source of calcium helps maintain new bone formation to support bone mass and slow age-related bone loss.
MCHC is an excellent source of bioavailable calcium, as well as a full spectrum of minerals and intact organic factors for comprehensive bone nourishment.
The MCHC in Cal Apatite is cold-processed to preserve the delicate protein matrix and organic factors.
Its microcrystalline structure is verified by X-ray diffraction analysis.
Cal Apatite is regularly assayed by a third-party laboratory for heavy metal contamination.
The MCHC in Cal Apatite is imported from New Zealand and derived from free-range fed cattle raised on land where no pesticides are used.
Cal Apatite has 20% collagen protein comprised almost exclusively of Type 1 collagen (96%), the predominant collagen in bone, providing further proof of the purity of our MCHC.
Magnesium plays important roles in bone metabolism and is an important mineral found primarily in bone tissue and essential for musculoskeletal health.
Provides a 2:1 calcium to magnesium ratio.

Mandy
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Post by Gloria »

Joe,
I have taken calcium supplements with and without magnesium. My vitamin D level was 92 the last time checked. I took Fosamax for a couple of years at different times, but I'm off of it now. Each time I get a DEXA scan, my numbers are worse. I'm assuming it's because I'm on Entocort and probably need to do more walking exercises.

This website maintained by an MD professor of medicine at the University of Washington is very informative: http://courses.washington.edu/bonephys/ If you look at the page on bone density, you'll see that a DEXA score of -2.5 means that you are right on the line between osteopenia and osteoporosis. A score of -2.4 is considered osteopenia; -2.5 is osteoporosis.

I've been taking Drs Best strontium pills, an OTC supplement for almost a year. Strontium is widely prescribed in Europe for osteoporosis. It isn't prescribed in the U.S. because it's an OTC supplement. No pharmacy here has conducted a study on it because there's no money in it for them. Because there's no study, doctors won't recommend it (they're practicing CYA.) But there are studies on its effectiveness in Europe and you can find a lot of information on it online. One of the osteoporosis support groups which I joined recommends strontium.

I can't report my results because I haven't had a DEXA scan since I started taking the strontium. My DEXA scores last year were Lumbar spine: -3.4; Hip: -2.9, both well into the osteoporosis range. I'm hoping for some improvement on the next scan.

Gloria
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Post by Stanz »

Joe,

I don't know if Prolotherapy might help this, but it's been a life saver for me, so maybe you should look into that?
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Post by Zizzle »

Research done on Osteoporosis at Tufts showed that alkalinizing the body through less grains and proteins, and more fruit and veggies, or in the case of the study, bicarbonate supplements, did more to stop bone loss and rebuild bone that any supplements. I would look into that research -- maybe they have someone you can talk to locally?

Here's a link to some stories about their research, some on Vitamin K and other contributing factors:
http://www.tuftshealthletter.com/Search ... teoporosis


This is the story about the specific study I'm referring to:

http://www.tuftshealthletter.com/ShowAr ... ?rowId=644

Of course all bets are off on whether this will negate the effects of steroid-induced bone loss.

“When fruits and vegetables are metabolized, they add bicarbonate, an alkaline compound, to the body,” said Dr. Dawson-Hughes. “Our study found that bicarbonate had a favorable effect on bone resorption and calcium excretion. This suggests that increasing the alkali content of the diet may attenuate bone loss in healthy older adults.

“When it comes to dietary concerns regarding bone health, calcium and vitamin D have received the most attention,” she added, “but there is increasing evidence that the acid/base balance of the diet is also important.”

Diets high in protein and cereal grains can cause an excess of acid in the body, produced by dietary metabolism. As people age, they typically become less able to excrete this acid, leading to an acidic buildup. The body responds by breaking down bone—a process called resorption—to release minerals such as calcium and phosphates along with alkaline salts. This loses calcium through excretion and weakens the bones, increasing fracture risk.
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Post by tex »

As people age, they typically become less able to excrete this acid, leading to an acidic buildup. The body responds by breaking down bone—a process called resorption—to release minerals such as calcium and phosphates along with alkaline salts. This loses calcium through excretion and weakens the bones, increasing fracture risk.
I wonder if that's really true, (that bone resorption is due to a build up of acid in the body), or of it's just another medical community assumption. Where does the body store all this alleged acid? If we become so acidic, why isn't it more obvious? If our pH were significantly below a normal level, we would slowly rot our clothes. Most of those billions of skin bacteria and mites that we carry around would no longer be able to survive on our skin, because bacteria are very sensitive to pH.

I tend to believe that the primary reason why we suffer bone resorption as we age, is because as a group, (IOW, in general), we aren't as active, and we don't get as much load-bearing exercise. The old cliché that says Use it or lose it, is right on target.

That said, I certainly am not advocating the consumption of grains, because I really don't believe that grains are good choices for anyone, unless there are no other choices available. When the chips are down, grains beat the heck out of nothing, as our neolithic ancestors discovered, when they began running out of wild animals to eat.

I have a real problem, however, believing that protein is bad for us. While we're omnivores, the archaeological evidence shows that historically, we have always leaned pretty far toward the carnivore category, until the neolithic period came along and our overall health as a species began the downward trend that continues to this day.

People who do research studies these days almost always have an agenda, and in order to prove the validity of the goals that are set by their agenda, by means of acceptable "scientific" methods, they make certain assumptions up front, that virtually guarantee that they will get the outcome they are seeking. IOW, in this case, cereal grains are so detrimental to health that they can override many of the benefits of the protein content of meat, so by combining protein and cereal grains, they can claim that a study shows that protein is bad for us, because a certain combination with other foods is bad.

I saw a study a few days ago that claimed that their research proved that fat and excess carbs were detrimental to some aspect of health (I don't even remember what it was they set out to prove), but the point is, why would they lump fat and carbs together? They have entirely different metabolic characteristics, so they should be studied separately. Now we all know that fat is not the evil enemy that most "food experts" claim it is, but a huge segment of the general population still isn't aware of that fact, so researchers continue to promote their agendas by preaching half-truths in order to take advantage of public ignorance. :roll:

Sorry, I seem to have gotten side-tracked. :rant: :lol:

Tex
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Post by Gayle »

Bone “remodeling” is a life long process. Remodeling is the quaint term given to the constant process of laying down of “new bone” while at the same time resorbtion of “old bone” is taking place. In the average human, the total skeleton is replaced by the normal remodeling process every 7 years. It’s fascinating to think – in terms of ones age – what number skeleton a person is working on at present.

The remodeling process normally takes place in both males and females at about the same rate. However, it is more common for the female to encounter problems with bone thinning earlier due to the fact that the female hormones will tend to wane at a much younger age. Plus the fact that the male just tends to have larger bones than the female to begin with, thus will generally have a larger margin of tolerable loss before getting into opteopenic or osteoporotic states.

It is important to know that the approach to staving off osteoporosis is really 3 pronged. All are important. A person can’t get by with considering just one, or in other words … just taking “something” will not make up for lack of exercise. :wink:

1. Dietary :cool:
Ingesting foods rich in calcium and magnesium.
Ingesting satisfactory levels of vitamins D and K.
Eliminate carbonated beverages from the diet.
The ingestion of to much calcium can result in kidney stones. Therefore the recommended limit is 1200 mg/day.

2. Exercise :cool:
Indulging in some form of weight bearing exercise every day. The stress of muscle pulling against the resistance of bone during weight bearing exercises increases the size and strength of bones. For example, tennis players have much larger bone in their dominant arm than their non-dominant arm due to the constant stress of the muscles pulling against bones while swinging the racquet. (NOT only is there more muscle in those arms – but there is actually more bone mass underneath those muscles.)

3. Hormonal :cool:
The parathyroiid glands play an important role in calcium regulation, and thus to some extent, the bone remodeling process.
Females tend to maintain bone mass until the female hormones being to wane, at which time it is common to start loosing bone faster than the rebuilding phase takes place. This was of course one of the arguments for giving all females hormone replacement when they approached menopause. It is also the basis of using the biophosphophate drugs which act by preventing bone resorbtion -- which leaves more old bone in place -- and so will then be theoretically stronger because the bone will be more dense. The problem turns out to be --- that the now denser bone is really the product of the older bone cells accumulating. So, the larger mass of bone which results -- is OLDER and more BRITTLE bone whic is not stronger.

Gayle
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Post by Joefnh »

Will that's quite a response and some great information. Thanks for all of your responses (both online and offline) and detailed descriptions of the bone loss and bone regeneration process. It feels like I'm back to drinking from a fire hose LOL

Zizzle I found the articles quite interesting, thank you for those.

Tex that note was from the radiologist, not my PCP, I doubt he knew of my jaw issue. I did quickly talk to my PCP today and he agrees that while the bisphosphinates are the 'normal' first recommendation, they would be contraindicated in my case.

For a plan forward I am being referred back to my rheumatologist to work on balancing the needs of treating the AS, MC, stenosis, Crohns and the osteoporosis. He feels that in my case given the GI issues and GI surgeries that absorption can be problematic and that I should work with my nutritionist to determine what blood tests would be beneficial in monitoring the blood levels for all of the required vitamin and mineral levels.

I will be going back to my nutritionist who I saw for the MRT counseling to source some of the supplements which include:


Bioceuticals VitD3 1000 IU sublingual drops (I have been taking 10k IU a day tablets)


Metagenics Osteo Plus hydroxyapatite and epimedium

Ingredients for Osteo Plus are:

Vitamin D3 (Cholecalciferol) 400 IU 100%
Vitamin K (Phytonadione) 50 mcg 62%
Vitamin B6 (Pyridoxine HCl) 2 mg 100%
Calcium (Citrate-Malate, MCHC) 750 mg 75%
Phosphorus 150 mg 15%
Magnesium (Glycinate, Oxide) 600 mg 150%
Zinc (Glycinate) 5 mg 33.4%
Copper (Glycinate) 0.5 mg 25%
Manganese (Glycinate) 3 mg 150%
Molybdenum (Glycinate) 55 mcg 74%
Microcrystalline Hydroxyapatite (MCHC) 400 mg **
Proteins (from MCHC) 88 mg **
Boron (Citrate, Aspartate, Glycinate) 2 mg **
Silicon (Silica) 5 mg **
Vanadium (Glycinate) 25 mcg **

I need to work through the values to see if any additional supplementation would be warranted and necessary, there is a compounding pharmacy that would help out with putting together any additional capsules with the required ingredients.

Again thanks to all of these great responses and incredible information, it is very helpful.
Joe
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Post by Gayle »

Joe said:
He feels that in my case given the GI issues and GI surgeries that absorption can be problematic

I would think this is a very plausible/probable opinion. The destruction of intestinal tissue done by active Crohn's Disease, as well as surgical resection of segments of small intestine, can have a negative impact on our bodies ability to absorb certain nutrients. Doesn't matter what we ingest, if the body has lost some of its ability to absorb -- any attempted workaround tends to become a lot more difficult and iffy.

But don't over look the hormonal part of the triangle. It might be worth an endocrinology workup to assess how the parathyroids are working. May tell you something, may tell you nothing. Don't know unless you look.

As in every case -- when trying to decide whether or not to take a certain medication -- there is always the risk/benefit ratio that is (or should be) fully considered -- after as much information as possible has been gathered.

Gayle
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Post by Joefnh »

Gayle you are correct with the resection of the bowel, in my case over the past 2 years I have had a section of my jejunum and colon removed. The jejunum due to Crohns with fistulas and the large intestine due to chronic diverticulitis.

The primary issue here is most likely due to the jejunum as it has the primary proclivity for the absorption of the minerals and vitamins due to its cellular structure. For me to maintain even a low vitamin D serum level of (~30) I need to take 5,000 I.U. a day, to approach 50ng/ml I need 10,000 I.U. a day. Most likely the osteoporosis is due to primarily the longterm GI issues which have been exacerbated by the use of methylprednisolone and Entocort over the past 8 months.

The dosage of the methylprednisolone was only 12 mg which is not significantly higher than the equivalent systemic activity of 9mg of Entocort EC. The one defining difference is the plasma half life of Entocort is about 22% less than methylprednisolone. In my case over the past 8 months I had been on 60 days of Entocort followed by 6 months of the methylprednisolone.

Hopefully with the addition of dietary supplements in conjunction with weight bearing excercises, the bone matrix can be reinforced and the density increased. I will be seeing a endocrinologist for a work up in relation to hormonal issues.

Thanks again for all of the information, it certainly does help in the decision making process regardng treatment decisions and long term management of this condition.
Joe
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Post by Stanz »

Joe,

I finally found the link to the blog and did a search here to see if I'd posted it already, and while I came up with quite a few hits, when I looked at the threads, I couldn't find it anywhere, so maybe I haven't posted it before, but there is a wealth of information and links in David's blog here: http://crohnsandibsbreakthrough.com/blo ... s-disease/

Hope you are doing well,

Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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