A support group for those who have osteoporosis, especially osteoporosis caused by immunosuppressants.

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Comment by India Rose on July 16, 2013 at 7:01pm

PS- if you have osteoporosis (and don't know why) see an endocrinologist!  This is their thing!  They will figure out why.  It is always good to get rid of the mystery!

Comment by India Rose on July 16, 2013 at 6:56pm

HI All-

One of the main causes of osteoporosis is hyperparathyrodism  (high PTH levles) which is common amongst ESRD and Transplant patients.   I had what they call tertiary hyperparathyroidism (common amongst transplant patients.) for years which was being treated with a drug called Sensipar. 

The PTH levels kept climbing and my bone density kept dropping (finally shwoing I had osteoporsis in 2012).  In January 2012 my teeth were very loose ...they had lost so much bone that had to have a splint put in to hold them in my mouth.  This was very scarey and I raised hell with my nephrologist who finally refereed me to an endocrinologist.  DJH!  (And why not earlier I ask you)  The endocronologist said he thought I needed to have 3+ of my parathyroid glands removed ASAP,  Scans confirmed this ...they showed that my glands were very large.  I had the surgery in June last year and now My PTH levels are a lot lower.  I take calcium and Vitimen D daily..A lot of my bone grew back and continues to grow back.  my bone density this year shows that I no longer have osteoporosis.  

I was very, very angry at my nephforlogist.. Why do they think that they have to know everything?  Why didn't he refer me to an endocrinologist years earlier?  So my advise to all of you, if you have higher than normal PTH levels, see an endocronologist ASAP, preferably one that treats ESRD and transplant patients.  Having a good endocornologist looking over your nephrologists shoulder cant;t hurt!

Comment by Mark on July 16, 2013 at 4:01pm

Diagnosed with osteoporosis in May after a bone scan. Don't yet have any symptoms but taking Fosamax daily. Had osteopenia for the 2 years following tx surgery which I suppose is fairly normal for many tx patients. For some reason, I lost 10% of the bone mass in my left arm over the last 12 months.

Comment by Bobbiejo on July 16, 2013 at 3:03pm

Dear Padster,

I am sorry that you have osteoporosis and problems with your legs as well. I did at one time have osteoporosis of the spine and osteopenia of the hip. I hope the inflammation will soon go down. My last bone scan did show an improvement such that I only now have osteopenia of the spine. I have been taking a calcium and vitamin D supplement daily and I get an annual infusion of the osteoporosis drug Reclast. This works out much better for me because of my acid reflux problems and the possible associated problem with taking a pill for osteoporosis like the generic of Fosamax. I was on it at the very first but soon was put on Reclast instead. I have been trying to exercise and put extra weight on my feet although I have to be careful because I am trying to gain weight. I also find that my legs bother me if I stand in one position for too long. I find that wearing shoes around the house has helped some with general leg pain that can develop closer to the end of the day perhaps because of the extra support as opposed to just wearing socks about the house. Best of wishes.

Comment by Padster on July 16, 2013 at 12:31pm

Hello there. I have osteoporosis which was brought on by steroid use and exacerbated by kidney failure which caused me to have a seizure, breaking my right femur in the process. I particularly notice osteo in the base of my spine, and a few days ago my right foot became inflamed. I don't like standing for too long, and my knees have started giving trouble. 

Best wishes,


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 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 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 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 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 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:

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!


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