Go to the National Osteoporosis Foundation website (www.nof.org ) go to the bottom of the page where it says "Connect with our Community" and click "Shop". The last item on the page there is the brochure/booklet called "Boning up on Osteoporosis." Buy it. I think it's $5.00 and an excellent resource to have.View Thread
The strontium you get in the US is not regulated nor is it the strontium that is prescribed as an osteo med. Strontium citrate is what you get here. There are no studies that indicate it helping your bone density. The Protelos (Strontium Ranelate) that is used in Europe is not pure strontiun. It is combined with other drugs and is only available as a prescription. Recent information coming in about it is that is it not as long term effective as originally hoped.
I would not take strontium citrate. You don't need it and it is currently one of the biggest marketing hypes. A lot like Coral Calcium was a few years ago. The marketing ads claim that it increases your bone density and you can get your money back if your numbers are better.
Well.....you numbers may very well be better because it gives you a false positive on the DXA test. Bone density machine measure ONLY calcium in the bones. If you've been taking strontium, that will make your calcium look denser, thereby making you think your bones are better when they're not.
If you're taking strontium, you should certainly tell your testing place and if they know what they're doing, your strontium use will be taken into consideration when interpretating your results. You will not have an accurate test and your $$$ will be for naught.View Thread
Being an accredited center means doing a lot of paperwork and jumping through a lot of standardized hoops. It means getting your "stuff" together. It is very involved, and some places just don't bother. However, being accredited shows that your testing center, technician, clinician meet very particular standards for testing and interpretation according to evidence based information.
It means when you go to a testing center, you can be assured of the highest quality test done by people who know the ins and outs of testing and that your test results are interpreted by someone who truly understands the subtleties of bone density testing.
Because there are no regulations or state requirements on who can do a bone density test, many places (particularly doctor offices) offer testing in their places as a convenience to the patient. They can even pull someone off a front desk to run in the back and do the test. The training is often done by the machine sales rep. Run away from places that do this. Ask questions about your tech's qualifications and training. Look for certificates on the wall. The slightest (and I mean fractions of an inch) variance in the way you're positioned on the table can mean the difference in whether or not your scores suggest you go on or off a medication.
It may be that Creighton is a leading center, but if they're not accredited by the ISCD, something is lacking. It would be like a druggist who lacked one semester of graduating handing out prescriptions. He knows a lot about pharmacology, but isn't quite there.
Next time you go there, ask why they're not accredited. It may be a simple answer. Also ask if they've attended any ISCD classes or annual meetings. That would be a plus.
Anybody can look at a T-score and make a determination. You can, your neighbor can, your postman can. It's simply a matter of seeing which category - stated on the printout - they fall into. The real determination of your bone density and risks are much more nuanced and personal than a T-score. That's where the ISCD comes in.
The T-score is the number that determines your bone mass and a diagnosis of osteoporosis. It's measured at L1-L4 in the spine, the total hip area, the femoral neck and possibly the wrist. If your score is -1.0 and above, your bone density is in the normal range. If it is -2.5 and lower, you have a diagnosis of osteoporosis. Anything in between (-1.1 to -2.4) is in the osteopenia range, meaning low bone mass.
Tests done at differing facilities cannot be compared accurately. That's why it's important to have your tests done at the same place each time.
People who don't understand the risk of Pilates on people with low bone density continue to use it. If your T-score is low or if you've had a vertebral fracture, you should not do any forward bending, twisting or crunches.
Glad you ordered the book. You'll be amazed at the information.View Thread
So did you have a DXA in 2008? Is the 20% loss , 20% from 2008 to 2010? Their way of giving results is very confusing. What are your T-scores? You should be given that information.
Still don't know if your testing place is a certified testing place. Ask them. Certified by the ISCD - the gold standard of testing.
Yes, no pilates. It puts pressure on the spine and can cause fractures in the tiny bones within the vertebrae, leading to a compression fracture. There is no warning for this. You don't know until the fracture happens, then there's no doubt and no do-over.
Being on prednisone and having had a compression fracture puts you at an extremely high risk of having another fracture. You certainly need to be on an osteoporosis medication.
ALL of our patients (and we see about 4000/year) who are on prednisone and/or who have had a compression fracture are advised to go on a medication. No exceptions. Our medical director is a rheumatologist and puts all of her high risk patients on a med. to reduce their risk of fracture.
The synthroid is not as big a player in this as is the prednisone. I wouldn't worry about the thryoid at this point. Did you know that having one osteoporosis fracture doubles your risk of having another? Did you know that half of all people who have a hip fracture will die of complications of that fracture within one year? That is certainly something you want to avoid if you can. A medicine will increase your odds of staying fracture free.
You say you have osteoporosis of the spine. We don't differentiate within the bones. You have osteoporosis. Even if your T-scores were in the normal or osteopenic range, the presence of a hip or vertebral fracture gives you a clinical diagnosis of osteoporosis.
Depending on your T-score and other risk factors, your doctor should talk with you about your selection of medication. Might be forteo if your numbers are very low. That's the only medication that actually grows new bone. The others strengthen what you have.
Whatever you choose, make sure you're getting 1200 mg of calcium a day combined with 1000 IU of Vit D. Without these, your medicine isn't as effective.
Avoid forward bending and twisting of the spine. Also no jogging or anything else that pounds the spine. These movements can cause tiny bones within your vertebrae to fracture, leading to another compression fracture.
You have a lot going on. Don't make it worse by avoiding an osteoporosis medication based on fear or "what if's."View Thread
Yes, they have too even if there's only one case of necrosis. As with every medication. Tylenol lists liver damage. Antidepressants list death. Prednisone lists heart attack. But the vast majority of people never experience these side effects,yet they're listed. I can tell you that to date - the ONLY DOCUMENTED cases of bisphosphonate related necrosis have been with nursing home patients who had cancer, were bed ridden and on IV bisphosphonates. There's a lot of press and fear about jaw necrosis, but not much verified.View Thread
What do you mean over the line into osteoporosis? T-score? have you had a fracture, especially hip or spine, as an adult?
Your health issues complicate your bone density, but then you already know that. Your doctor is right to want you on a medication. However, I can only say that our osteoporosis center medical director is a rheumatologist with patients just like you and she won't prescribe Prolia until all other osteo meds have been tried with no success. Prolia is not a first choice or first experience med.
As for side effects.....I'm sure the meds you take for your CREST have the possibility of horrible side effects. I know they do. Yet you must take them because of your serious condition. Same with osteoporosis. One vertebral fracture can change your life and independence (and clothes you wear) forever and there is no cure. Just prevention.
The meds, whether injection or pills, all stay in your system for 10 years. If you take a pill for 6 months and then stop, it doesn't vacate your body. Don't worry about injection vs pill. Same thing.
Whatever you take, you need to consume 1200 mg of calcium a day and 1000 IU of Vit D with it in order for the medication to work. If you don't, you're wasting your time and money on a medication. The calcium will be absorbed in 500 mg increments only. That's all the body can handle at one time - so spread it out. If you take supplements, take 600 mg at lunch and 600 at supper for maximum effect.
As for your activities. I know you don't want to hear this, but you either have to switch to others or be very very careful as you could have a compression fracture in the blink of an eye. The way it works is that your spine is made up of thick cortical bone that is the vertebrae you feel when you run your hand over your back. Those are the bones you see in spine illustrations. Inside those vertebrae are the trabecular or honeycomb bone. These are actually tiny tiny struts. When your bone density is low, the smallest bones break first. You do not feel a thing when these struts break because the outside bone is holding it all in. When a majority of the struts break and cannot hold the vertebrae in place, wham! they crash together and you have compression fracture. There is no doubt when you have this. The pain is extreme.
That's why the recommendations for people with low bone density are to avoid pounding of the spine (horseback riding, jogging) bending forward from the waist (Pilates and some yoga moves) and twisting of the spine (golf) Your risks are just too great.
Go online to the National Osteoporosis Foundation (www.nof.org ) for a lot more info about this. You can also order their booklet "Boning Up on Osteoporosis" for good information and guidelines for living with osteoporosis. We also use it as a teaching tool for our rehab classes.View Thread