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Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 12/5/2009 12:41 PM (GMT -7)   
Dear CD forumites,

I been away dealing with CD as always, what is new. Anyway, I have new complications now. Because of my long-term prednisone usage, now I have full-blown osteoporosis, particularly badly affected in the hip region with serious risk of fractures. I have been on Fosmax (generic version) for about 2 months or more. I am on remicade now and I am hoping to come off pred.

At any rate, any of you with Osteoporosis, could you give me any advice on how I can learn to deal with it or how you are dealing with it. Your advice is appreciated.

Thanks,

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 12/5/2009 12:53 PM (GMT -7)   
i contracted steriod induced osteoporisis after like 2-3 years on prednisone. i was like 19 or 20 at the time. how lame is that. i was put on fosamax (this was when it was a daily pill) and took it for like 10 years. i had yearly bone scans and each time i improved, but very minimally, even after i got off the prednisone.

studies show fosamax works, but not the way you think or are lead to believe it works. if i knew then what i know now, i would have never taken it. it tricks the bone density test. you are not building the right kind of bone. you have two types of bone cells and it makes one type transform into the other, which is what the test looks for. in the long term you actually become more likely to have brittle bones and have fractures. and it has a bunch of side effects too -like increasing risks for ulcers, especially when taken with anti-inflammatories (which you're probably on) and liver damage and osteonecrosis (bone death), which is way worse than osteoporosis.


from mercola.com:

Fosamax is in the same chemical class (phosphonate) that is used in the cleaners used to remove soap scum from your bath tub. This is a metabolic poison that actually kills the osteoclasts. These are the cells that remove your bone so your osteoblasts can actually rebuild your bone.

It is quite clear that if you kill these cells your bone will get denser. What these studies do not show is that four years later the bone actually becomes weaker even though it is more dense.

This is because bone is a dynamic structure and requires the removal and REPLACEMENT of new bone to stay strong. Fosamax does NOT build ANY new bone. The true solution, as I have reviewed in previous newsletters, is to go on natural progesterone. One can review Dr. Lee's book for more information.

Progesterone is the only substance that I know of that will actually increase bone strength and density. It does this by serving as a growth promoter for the osteoblasts, or the cells that build bone. Of course, it would be wise to have the other basics in place such as adequate amounts of calcium, zinc, magnesium, vitamin D and copper, in addition to exercise and avoidance of items that will damage bone like soda pop and sugar.

This is one of the main reasons you will not find studies published on natural progesterone as it is a natural substance which can not be patented and no huge amounts of profit can be realized. (NOTE - PROGESTERONE HAS ITS OWN PROBLEMS SO CHECK THAT OUT BEFORE YOU USE IT IN LIEU OF FOSAMAX)



Exercise and large amounts of vegetables are likely to be more important the mineral replacements. Most people automatically assume that calcium is the most important factor to address bone density. I have seen a large number of women consuming calcium supplements that did not have good bone density as these other issues were not addressed.

Vitamin D is also essential to the formation of strong bones. There is an article that will likely go in next week's newsletter that provides some interesting conjecture that vitamin D should not even really be called a vitamin but is more appropriately identified as a precursor to a steroid hormone. A good mineral replacement however is probably wise.

Magnesium, manganese, zinc, silicon and boron are also important nutrients that should be in the supplement.

If you do decide to take Fosamax, be sure to ask your doctor to check your liver function at regular intervals.



FROM LawyersAndSettlements.com July 19, 2007:
Merck, maker of osteoporosis drug Fosamax, may have “seriously under reported” the risks of "jawbone death" related to the drug, according to the American Association of Oral and Maxillofacial Surgeons. A class-action lawsuit has been filed claiming that Merck knew about the risk of jawbone death but hid it from the public.

"Jawbone death" is associated with the use of a bisphosphonate class of drugs (to which Fosamax belongs). Also known as Bisphosphonate-Related Osteonecrosis of the Jaw (BRONJ), is a serious side effect that destroys the bone in the jaw, and is difficult to treat.

BRONJ was reported by oral surgeons, who noticed the condition among patients treated with intravenous forms of bisphosphonates in 2003. A broader warning of BRONJ was issued for the entire class of drugs in 2005.

Fosamax is prescribed to about 10 million men and women -- mostly postmenopausal women -- each year to help increase bone density, with annual sales of $3 billion. Over 190 million prescriptions for oral bisphosphonate drugs have been dispensed worldwide.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 12/5/2009 1:10 PM (GMT -7)   
I worry about this so much for my husband, but the doctors won't even get a dexa scan to see how he's doing. He spent almost 10 months last year on prednisone, and part of that time was very high dose (120 mgs solumedrol in the hospital, and came home on 80 mgs of prednisone). Now, for the past 4 weeks, he's back on prednisone. He's 44 years old, and the docs just say to get enough calcium and vitamin D, and do load bearing exercise when possible.

what symptoms did you have for osteoporosis?

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 12/5/2009 1:55 PM (GMT -7)   
Dear PV, your husbands symptoms seem very similar to mine and we fall more or less in the same age group, but I have been on pred for over three years, now I am on very low dosage about 5 mg. I got the same advice as your husband, presently no symptoms at all (with the exception of some minor pain in the right hip), but as we all age things are going to get bad...unfortuantely osteoporosis is non reversible. I am also at high risk for high blood sugar and high blood pressure (both an outcome of pred usage). Yes, I have heard about the jawbone thing from several people including my endocrinologist. Not sure what to do about it, I am going to work on my living will...that's all I control for now.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 12/5/2009 2:51 PM (GMT -7)   
I think that CrazyHarry's post covers the subject pretty well. There are other treatments that can build bone density. Ask your doctor about them, preferably with some sources from the scientific literature for him to consider like (progesterone) http://grande.nal.usda.gov/ibids/index.php?mode2=detail&origin=ibids_references&therow=580742 and
(calcitonin) http://www.ncbi.nlm.nih.gov/pubmed/14529539

The only thing that might be added is the question of absorption. Do you have problems due to surgery, liver inflammation, pancreatitis or diarrhea that would interfere with nutrient absorption? Poor fat metabolism is especially dangerous since it can result in a vitamin K deficiency and that vitamin is also needed for proper bone formation. See: http://www.umm.edu/altmed/articles/vitamin-k-000343.htm

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 12/5/2009 5:54 PM (GMT -7)   
I had excellent results w/Forteo in the spine and very good results w/Forteo in the hips. I forget my T-Scores now - but - in two years of use w/Forteo (2005 to 2007) I gained bone mass back to my 1996 DEXA T-score levels. The third year of Forteo my results were not as dramatic but STILL an improvement. AND whilst they recommend that you take calcium and vitamin D along w/the Forteo (as they do w/the bisphosphonates as well) I can not and DID NOT take ANY calcium supplement altho I did vitamin D.
 
Because I was NOT willing to even consider the oral bisphosphonates nor the hormone therapy such as Evista, etc. we did try the bisphosphonate infusions in order to reduce or eliminate the risk to the digestive tract. I was given pamidronate (Aredia) via 4 hr drip on two occasions. Both years I still had bone loss and NO IMPROVEMENT.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 12/5/2009 5:58:09 PM (GMT-7)


bestcrystal
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 3/12/2012 1:07 AM (GMT -7)   
Here's another informative site about vitamin K: http://products.mercola.com/vitamin-k/ I just came across it while I was researching. I hope it helps.
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