Osteoporosis and Sarcoidosis...I'm confused

Ok, my primary care physician did a bone scan on me, about six months ago. She said I had osteoporosis and gave me a free sample of Boniva and a prescription for it. I placed the prescription, but when I went to pick it up it was $50.00!!! For one pill. I told them I couldn't afford it. Then a couple months later I had an appointment with my Pulmonary Doctor. Since I was a little late, and he seemed miffed, I was only in there about 10 minutes. Asking me to come back in December for another Pulmonary Function Test to compare to the one I took in February. I meant to ask him about the osteoporosis. But the last thing he said to me was to make sure I didn't take calcium because of the complications it has with Sarcoidosis. I felt like I could here crickets chirping as I stared momentarily like an idiot. Then I left. I guess the smart thing to do would be to call him and ask him, that since Prednisone and the Levothyroxin cause calcium deficiency leading to osteoporosis, what's the alternative.

Priscurl and JaynesInPain, do you guys have any information about this? I know taking calcium is problematic, since drinking milk can actually lower our calcium, since it has to pull calcium from our bones just to digest the milk. And milk helps create mucus which we need to avoid. And calcium neutrilizes our stomach acid, making it hard to digest our food, so what's the answer? Taking other minerals, like magnesium, phosphorus, etc.?

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That vitamin D thing is a real bear! I don't think calcium is so much the problem as it is the vitamin D. I have found calcium without the vitamin D, but it's hard to find and there is no way to know if it is a good suppliment. I know in this past year, besides the numerous surgeries, I've begun to lose bone in my gums and the osteo has increased quite a bit. I get the same kind of feedback that you got but was offered no solutions to the problems. One doctor sends me to another one and I've yet to hear those magic words, "I know exactly how to help you." Good luck and be as well as possible.

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The answer is remission.

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I have also been prescribed Boniva but have not been taking it. Should I?

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If you have had the blood work and urine testing as suggested in numerous posts by Priscurl she can make it very clear for you whether or not you need supplementing or not. There are also HELP lines at Cleveland Clinic and NJMC where you can call or email questions, but you should include your test result numbers so they can be more specific.

mbeth059 - did you get a copy of your bone scan imaging summary? That would also be helpful when you make your inquiry.

You can also take all your testing results to a rheumatologist or endocrinologist to get a second and third opinion - make sure when you call to make the appoinment to ask if those docs are familiar with Sarc calcium/vit D metablism variations.

Regards,
I.

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Here's a thread with a detailed entry from Priscurl:

http://www.inspire.com/groups/stop-sarcoidosis/discussion/calcium-attack/

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I have osteopenia. As far as I know, you can't take vitamin D but you are allowed to take extra calcium. There are also alternative osteoporosis treatments. Check the Wikipedia article on osteoporosis. Magnesium supplement everyday might also help.

David

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I have been taking 1000 mg of calcium without Vitamin D for 26 years, no side effects, no problems. My bone density is about 128% of normal for my age and gender, and has held that level for years.

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Hi mbeth50.

David is correct, calcium is not a problem, vitamin D supps are the problem for sarcies. I live in Australia and here there is legislation in existence which was copied from that of the European Union on vitamins. In the legislation, it states that vitamin D can be a problem for some people with sarcoidosis and other malignant maladies. I don't know what it means or exactly why it exists, but I suspect it could be used in a case against a doctor, if say, a sarcoidosis patient was placed on high dose D and lost a $50,000 a year job because of kidney failure or a stroke which could be directly linked to the D. When I was at one of Sydney West's major teaching hospitals under the leading University (med school) in Sydney, I was given a script for calcium and prednisone by the ER docs, but no vitamin D at all. I am sorry I didn't ask about why they gave me calcium rather than vitamin D, but I think it may have had something to do with this legislation I mention above. I know Britain has something similar because one of the British members spoke of it on this very board.

As Jim mentions, not everyone has a problem with vitamin D. Those who do have a problem often already know it, because they feel unwell after having a day in the sun. They may not know why they feel unwell, but over the years they may discover a pattern. Others don't realise they have a problem, but react badly when they begin D supplements. Still others go the whole hog and end up with parathyroid problems or hypercalcemia before they realise the D is a problem.

Most people who have high calcium levels at diagnosis are told to avoid D foods and supps if their doctors are savvy enough.

Prednisone stops excess D being made in sarcoidosis patients, as does Plaquenil, other chloroquins, biologics like Remicade, and antifungals such as ketoconozole. So the D is not a problem on Prednisone. I have seen a paper recently (it was by a Pom Dr called Beynon) which stated that D was not effective to treat prednisone-caused bone loss. That is the first time I have seen that mentioned.

Boniva will keep calcium in the bones but it does not alter 1,25D production levels in sarcoid patients. There have been sarcoid patients who were placed on Boniva who still developed significant calcium problems due to sarcoidosis even while on this drug. This is because while Boniva acts on bone, it does not effect calcium which is absorbed via the gut. I guess if you are D sensitive, this would mean you could take calcium safely while on prednisone, but you would not be able to take calcium supps if you were off prednisone while on Boniva as well.

Pris

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I know that with Sarcoidosis a persons vitamin D levels are higer, but my Pulmonologist told me that I can take vitamin D, as he stated that the vitamin D in my system is different than taking a supplement. (After reading the posts here I am wondering if taking vitamin D is a good idea.) I did read somewhere that the reason a sarcoidosis patient has higher levels of vitamin D is that the bacteria that causes sarcoidosis produces vitamin D. I thought this was strange as I did not know there was any bacteria associated with this disease. I have the start of osteoporosis due to the large levels of prednisone that I took when it was first discovered that I had sarcoidosis. (This was discovered because a surgeon went into my neck and took lymph nodes to biopsy since I was so extremely sick, as the Dr thought I might have lymphoma or hodgkins lymphoma.) I take Actenol every week (it is still too early to tell if it is helping).

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klma,

I'm not sure about that statement "sarcoid patients have higher levels of vit D". I always test low for D-even before prednisone & I've read many other post where others say their D was low too. - Jayne

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That is interesting. Thanks! Now I am all confused......I really wish I could find a Dr that knows all about sarcoidosis. My Dr had helped me a lot when I am sick with an illness like pnemonia, but he has not helped me to determine what I should be eating, vitamins I should be taking, or anything like that to help my body fight this.

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Mbeth,
As a 4+ year NS sarkie, I know about the mucus thing with milk. The thing is I am still a kid and simply cannot live without my periodic glass of chocolate milk!

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Oh confusion here again.

In many Sarcoid patients Vitamin 1.25 D is elevated. This is not a common form of vitamin D.

If somebody is said to have a low vitamin D, this means the normal vitamin D 25 has been tested, not the vitamin D 1.25. Vitamin D 25 is beneficial, the vitamin D 1.25 is not.

The bad vitamin D 1.25 is produced inside cancer cells of some cancer patients and inside granuloma's (clusters of immune cells) of sarcoid patients. If D 1.25 is produced it converts the healthy Vitamin D 25 to the bad Vitamin D 1.25.

D 1.25 causes and extreme calcium absorption capacity of the blood. The blood will absorb an extreme amount of calcium from our food true the intestine and will at the same time absorb lots of calcium from our bones causing possibly osteoporosis, hypercalcemia, kidney stones and even kidney failure.

This is the reason sarcoid patients often can't take vitamin D cause it is immedeatley converted to the bad form of Vitamin D by the granuloma's.

David

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pfehrman,
Thanks for the input. Yea, I'm so confused about regular Vitamin D vs. the 1,25 D. Still need to educate myself on Vit. D. And I've heard that you should take Calcium and Magnesium together at a 2:1 Ratio, because they use each other for absorption, etc., Now, today I was reading the 'flyer' that comes in our Sunday newspaper from Natural Grocer (www.naturalgrocers.com) in their July issue, it talks about statins for lowering cholesterol and how they increase Vitamin D. My primary doctor gave me a prescription for Zocor this past winter that I never filled. So now, I'm glad, because apparently this would raise my Vitamin D level. I'm more confused than ever. I'm going to call my primary care and pulmonary doctors Tuesday (tomorrow) to try to get some answers.

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IreneMarie,
Thanks for the input. I'll dig up my bone scan infor. before calling. I need to try to educate myself before I can ask an intelligent question. Ha ha. That's an oxymoron!!

I used to get so mad at my teachers in school who would ask, 'What is it you don't understand?'........IF I KNEW, I WOULDN'T BE ASKING!!!!'
Thanks, Irene

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Wakaliz,
I don't know.........I guess I'm reluctant to take a prescription if I don't know the side effects and how it might effect my other prescriptions.

For instance: my mother was in a nursing home and I made a list of about ten prescriptions she was on. Then I researched each one, and found that one prescription was for side-effects of another drug, and so on. It was like a train. Each one either magnified or deminished another drug, so I asked her doctor to wean her down to only the most essential three or so.

So, since I'm aready on Prenisone and Levothyroxil, I tell the doctors that I don't want to wind up like other elderly people, with a shoebox full of prescription drugs.

Besides, I try to use herbs and natural supplements and vitamins and minerals.

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Thanks gphx,
Yea, I've seen that discussion before,and probably copied it, but am copying it again. It's ten pages with referrences to other sites. I will educate myself on the very mysterious Vitamin D, Calcium and how everything affects our sarcoidosis.

Is there a doctor in the house????

Where's Dr. House, when you need him?

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To everyone who recv'd my templates - check the calcium/vit D algorithm to clarify the issue.

Regards,
I.

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Thanks David2727,
What is Osteopenia? Yea, I think I'll avoid Vitamin D and take Calcium/Magnesium and other vitamins and minerals. Plus there are bone strengthening exercises to do. I've found some on Google. Thanks you guys, for all of your tips and information.

I'll let you know, if I find out more from my doctors tomorrow.
Mbeth059

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Thanks Jim,
Yea, I think the big 'no-no' is the Vitamin D. Thanks for the information.
Mbeth059

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