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Comment by BOBBI on February 25, 2013 at 11:37pm

just got the results from my bone density test.i guess i spoke too soon saying the calcium and vitamin d and working my bones hard were doing the trick.i am now diagnosed extremely high risk for a spinal fracture.the nexium ive been on for the last 6yrs has taken its toll on my old bones.so its now time to try a new drug .i hate having to try new drugs after you get used to taking something for so long.i havent picked the drug up from the pharmacy yet have to ween off the nexium first.who knew youd have to ween off of nexium.it all seems like a viscious cycle had to get on the nexium because the acid reflux irritated the varices which you know is from a bad liver.one thing thats scary about osteoporosis is you dont fall down and break a bone you break a bone and then fall down.i think ill stop tobbaggoning now

Comment by david on July 23, 2012 at 10:18am

I found out I had Degenerative Disc, Osteoperosis and needed a liver transplant all about the same time back in 2007. I got on Disability and started going to Drs about my liver problems. I got my liver transplant 10/13/2011 but still have the back problems. Ive lost about 4 inches in height. I have daily shots of Forteo to help strenghten the bones. Osteoperosis runs in my family so I didnt have much of a chance. After transplant Drs say you need to get out and walk or exercise, well it hurts to walk, stand or even sit too long at a time and no pain med that I can take works. I just have to deal wit it.

Comment by BOBBI on July 19, 2012 at 6:36pm

since ive had osteoperosis ive lost 3 inches in height i have a small dowagers hump.but i grew my hair long you cant see it.i was 5ft 7 and now 5ft4.unfortunatley osteo meds are very hard on the liver and since im a transplant it doesnt even get mentioned anymore by the drs.i did try fosomax once and it gave me severe jaw pain.so this is a disease ive just learned to live with.i cant stand for more than ten min at a time.its uncomfortable to sit on a hard surface for long.i take alot of cacium with vitamin d.so far no broken bones

Comment by Jay Lackritz on July 14, 2012 at 12:19pm

New osteoporosis drug may let us keep away from bisphosphonates.

July 11 (Reuters) - A pivotal trial of Merck & Co's experimental osteoporosis drug odanacatib has shown that it reduces fracture risk, prompting outside monitors to recommend that the study be stopped early.

News that the novel drug was shown to be effective sent shares of Merck up more than 3 percent.

The company said it expects to take a number of months to wind up the trial, which began in 2007, but will continue with an extension trial to follow up on certain safety issues flagged by the Data Monitoring Committee.

Merck said it expects to submit regulatory applications for U.S., European and Japanese approval of odanacatib in the first half of next year.

The oral drug, taken weekly, is considered more convenient than an older class of osteoporosis drugs known as bisphosphonates. Sales of Merck's bisphosphonate drug Fosamax reached $3 billion in 2007, but that revenue has plunged since emergence of generic competition in early 2008.

Bisphosphonate use has also declined due to safety concerns including the risk of osteonecrosis of the jaw, a severe bone disease.

Wall Street analysts, on average, have forecast annual sales of odanacatib at $402 million by 2016, according to Thomson Pharma.

Credit Suisse analyst Catherine Arnold recently raised her 2020 sales estimate for the drug to $1.1 billion from $350 million, citing meaningful differences in fracture rates to bisphosphonates and the likelihood that more osteoporosis sufferers would take medication if a potentially safer option were available.

Odanacatib is designed to block cathepsin K, the major enzyme in osteoclasts that is responsible for breakdown of existing bone tissue.

The pivotal study involved over 16,000 post-menopausal women with osteoporosis. It was expected to continue until hip fractures had been reported in 237 patients. Merck said the interim analysis was conducted when around 70 percent of the targeted number of hip fractures had been reported.

The company said it expects to report final results from the study next year.

Shares of Merck rose more than 3 percent in after-hours trading to $42.49. Earlier, the stock closed at $41.21 on the New York Stock Exchange.

There are some interesting osteoporosis videos on the bottom of the page of the news story:

http://www.huffingtonpost.com/2012/07/12/odanacatib-osteoporosis-dr...

Comment by Judith on July 14, 2012 at 7:29am

Hello everyone.  I was given tons of IV Pred in the beginning of my transplant journey 21years 8 months ago.  I had lots of problems with 3 more surgeries and 2 rejections so they gave me boluses of pred starting at 1,000 mg at a time and backing off.  Then was on high doses for years till things leveled off.  As a result, I got severe Osteoporosis.  I was told to drink a minimum of 2 glasses of milk a day (eventually ended up with lactose intolerance) so that was not good, have been on Fosomax and now on Boniva.  I take 50,000 IU of Vitamin D per month and then 1200 mg of Calcium with D per day.  My weakness is in my arms and upper back.  I have lost some inches off my height.  It is debatable how much as my Son said I have always been a "munchkin".  I have actually broken bones in my back just from reaching for large items in the grocery store off of high shelves.  Have had to rearrange my cabinets at home so I don't put stress on my bones.  Anyway, with the transplant, there are many crosses to bare to have this longer life and I am so thankful for that!

Comment by Dan on December 14, 2011 at 12:55pm

Thanks for the responses, Jay and Kim.  Forteo sounds very intriguing, but since my finances are non-existent I am guessing it probably isn't even worth asking about.  Kim, what is TMJ?  I have been on and off Fosamax for years, then switched to Boniva last year, but have not taken it for some time because I can't afford the copay.  Anyway, welcome to the group!

Comment by Jay Lackritz on December 14, 2011 at 3:44am

Hi Dan,

Sorry I didn't respond earlier, I somehow missed your message.

No, they're not keeping Forteo under wraps, it's just expensive.

And, yes, you only take it for a period of time, and I used it when it was new, so when I took you only used it for 6 months. I think this period is different now. When I took it, the manufacturer (Lilly) sent a salesperson to my doctor's office to train a group of people who were on it. I needs to be refrigerated, and when I took it, this was difficult, since I was constantly traveling, so I needed to arrange for a fridge in every hotel I stayed in.

I thing it is still considered the only treatment that will actually build new bone.

I think that nowadays there are many precautions, so it is prescribed only for people whose osteo is relatively serious and not mild.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000227/

Comment by Kim on December 14, 2011 at 12:31am

I lost an inch and a half of height due to my osteoporosis. I have taken both Fosamax and Boniva but have developed TMJ so bad I can hardly chew without my jaw popping so bad you can hear it across the room, and occasionally even when I just yawn or talk.

I am on Prolia now but is affects the immune system so its a catch 22.. my T-score in my hips was -3.7 and my wrists were -5.2 so it was getting really bad. Hopefully the prolia will work. It can also cause problems with the jaw..

Comment by Dan on December 1, 2011 at 2:14pm

Thanks, Jay.  I have taken Alendronate before, but it has been awhile, and I didn't realize it was that inexpensive.  I'll have to start taking that again.  I had never heard of Forneo.  Why is is being kept so under wraps?  Did you start  to have problems with it, or why did they take you off of it?  I had a weird period back in summer 2007 where I was coughing up pretty signficant amounts of blood, so they took me off of Fosamax, though it was never definitively determined that Fosamax was the culprit.  I preferred taking the Boniva once I started on that...wonder if it is available generically?  One thing's for sure, I definitely need to start taking something against, since the osteoporosis is only getting worse. 

Comment by Jay Lackritz on December 1, 2011 at 8:44am

Hi Dan,

Did you know that Fosamax is available generically? It's called Alendronate. WalMart, for example, has it for $8/month. I used to take Forteo, which is the only drug known to reverse osteoporosis, and after that, I was on Fosamax for a few years. My dentist insisted I stop, because of all the potential side effects. Anyway, my osteo is better than it was, and my doctor allowed me to stop the fosamax. Now I'm only taking Calcium, plus D and Magnesium. (2500 IU D3, 1500 mg Calcium, 400 mg).

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