STOP! Don't do this if you have osteoporosis

@babbsjoy

I like your recommendation about parking spaces, parking so you can just pull out going forward rather than having to twist around to look behind you. I will definitely mention this to my husband.

It is a lot but it's worth it. I am hoping and praying that the Forteo will help him and that he can get off prednisone sooner rather than later. We've got a few more months at least to go through the tapering process. We have to hope and pray he doesn't have a flare of his conditions (PMR and GCA) and that he can eventually be off drugs. He takes Actemra to help taper the prednisone and will likely remain on Actemra for some time after prednisone. It doesn't have as many of the nasty side effects we've experienced with prednisone. Including steroid-induced osteoporosis.

you need to see a specialist. You could be doing something dangerous to your kidneys by taking calcium IF your lab checks out normal calcium in your blood! Vitamin D doesn't do anything much so you are wasting your time. I had nutritional chemistry, cook all my meals knowing nutrition and exercise everyday (I'm 67) -- it didn't help keep me out of having my neck vertebrae bone fall apart in surgery last summer. There is a lot to learn and you have to work as a team with your doctor. There are medicines which don't damage your kidneys. Your doctor will help. Drink plenty of water. Can't rely on the DEXAs. I've had them every year since 1998. Nothing prepared me for last summer. No one knows why my bones are the way they are. could have been a past medication. See a good endocrinologist. The best you can find! I really don't have osteoporosis. but I do have osteoarthritis. You can have some good bones and some bad. See a good doctor. Your body will love you!

Here's my comment to add:
1) Be sure you have a GREAT doctor. You might have to search and try different branches of a department but keep going until you get a trustworthy doctor that is informed.
2) Never put all your trust into a doctor without studying up and making notes to ask questions.
3) If one doctor isn't available enough GET TWO.
4) Call the pharmaceutical companies and have them answer your questions about medications
5) Don't dismiss intuitions
6) Keep an open mind - some things you think are causal turn out not to be
7) get books from the library and read about your diseases
8) stay active even if it is gentle chair yoga and walking; standing is particularly helpful
9) keep a good attitude when possible. Some days are down days, but find a creative outlet you can always depend on to lift your spirits
10) share what you learn!

kstar077,
Who says do not get REMs Echolight if you have Osteoporosis?

@loriesco

I saw your response to @healthseeker77 about calcium and Vit D.

My husband's endocrinologist suggest getting 600 mg calcium in the morning, preferably from food, and another 600 mg in the evening again preferably from food. If you can't get enough from food either in the morning or afternoon, take a calcium supplement to make up the difference (example: if you eat 300 mg calcium in the morning, then take another 300 mg of calcium supplement.)

She also said it's important to get 1,000 mg Vit D. That the Vit D was also important.

His labs check out OK for calcium. So I'm confused about your comments that healthseeker77 is possibly doing something dangerous, and is wasting his/her time taking Vit D. Is this for people with kidney issues?

I'm very sorry to hear what happened to your neck during surgery. That must have been such a shock.

My husband had his first DEXA this year (he has steroid-induced osteoporosis, it's very bad, from taking prednisone for over a year for two medical conditions. The prednisone was his only option for both PMR and GCA (polymyalgia rheumatica and giant cell arteritis.) The DEXA showed the osteoporosis. Are you saying you had DEXA's and they didn't show your neck issue?

Having said that, I had my DEXA scan this year also and mine turned out that my bone density is great. I also had an x-ray taken of my neck because of some hand pain and I have cervical stenosis that I didn't know I had. So we can have spine issues and still have a good DEXA scan result. You're right that we can have some good bones and some bad.

My recommendation for people with osteoporosis is seeing an endocrinologist and also a physical therapist. Ask lots of questions including what you can and can't do under your own personal circumstances. Before we asked no one told us to limit anything (before we found our endocrinologist.) Once we found her, we started asking lots of questions - especially after it was discovered he had two new fractures. Now we have a good road map of what he should and should not be doing until these fractures are more stable. We work with her and the physical therapist (virtually - he's not gone to have anyone do physical therapy with him. We are using the physical therapist right now mostly for reading x-rays and helping guide us on what is and isn't safe for him to do in his current condition.) We will continue to follow-up with them both.

@loriesco

Thank you for your list!!

I agree with getting a great doctor and not settling. It took us a while and making changes with doctors we didn't feel were competent. When they say they take care of patients with osteoporosis and have never heard of Forteo or Evenity it's time for a new doctor. In my opinion. The best doctor we found for osteoporosis is an endocrinologist. And we have a rheumatologist for his other conditions. We also have a physical therapist to help us navigate the osteoporosis. It's my husband who has it, not me.

I've never called the pharmaceutical companies but that's a good idea.

Two websites our doctors agree provide good, accurate information are Mayo Clinic and Cleveland Clinic. There are other good ones, some from other countries I've found useful.

I find lots and lots of good information online. You just have to be sure it's from a good reliable source. My schedule doesn't allow me much time to go to the library but that's another good place to go. I've bought many books off Amazon too.

Your attitude will go a long way to help you heal. Sometimes it's hard and it's depressing but the most important thing is to keep a positive outlook. I believe in the mind-body connection.

And like you I am a firm believer in sharing what you learn. I love this site for that.

Thought you did..my misinterpretation..

Yes, I like this forum too! Best of luck for you and your spouse!

Hello @isabelle7 !
I do not think you need to worry about getting extra calcium from food! No worries there! But I would caution about taking calcium supplements if your husbands blood test are calcium normal. Having too much calcium can have undesirable side effects. The same with vitamin D! I was low on vitamin D when I finished menopause - as are most women and most people as they age need more vitamin (I take 5000 iu every day now - but I also am tested to make sure my vitamin d levels are midrange normal. If your vitamin d is too high it works AGAINST the bone medicines. I have used this group to figure out what tests I need to ask the endocrine dr for. He didn’t think I needed any baseline testing but I asked my primary doctor and she agreed with me. So if you are going to put supplements into your body make sure you get periodic labs to make sure all is humming along in harmony. I also look up what it means if I am borderline low or high on test results. It ALWAYS means something if one is on the borderline. The doctors always dismiss borderline testing as if so how it’s “normal” but I tell them normal is near the MIDDLE! not at the ends. 😊
As far as the DEXA- correct— they don’t always tell the truth. I never had any indication my bones weren’t strong until cervical spine surgery and my C5 fell apart in their hands last year. No one has even said I HAVE osteoporosis in the past year, but I am on this bone medicine now. All I know is I have degenerative disc condition and osteoarthritis. It is the right time of life to have deteriorating bones so being on this medicine is valuable. Even if the DEXA isn’t accurate, they can still use it to see if my density is changing over time. But you have to stay with the same equipment because the calibration needs to be consistent. And wouldn’t you know it but my insurance company is no longer going to contract with my DEXA provider next month! But I will stay with them and pay a small copay next year.
I guess we just learn a lot as we go! I am sorry to hear about your husband’s steroid side effects! I’ve had to rely on steroid injections but always take a half dose over the years and only periodic use.
I think menopause did me in and I might check out getting back on bio identical HRT . That might help maintain a strong body. Good luck and stay strong! Lori

With the first ones I didn’t know they were fractures - I was in extreme pain and tried over the counter meds and resting - called my Primary Care’s office and unfortunately we thought it was muscle strain (I was picking up a bag of books). When the pain subsided after a few weeks (the meds didn’t help much at all.) I had another fracture after bending down to take a dish out of the dishwasher. Again, not realizing it was a fracture. The third happened while just sitting - crazy. So my neurologist ordered a scan after a routine visit when I complained about my pain - that’s when the first few were discovered. The reason I was on steroids to begin with was due to having been diagnosed with necrotizing autoimmune myopathy. 7 months into IVIg I started with 3 days of IV steroids (1,000 each) then 60mgs of prednisone tapering off when improvement was being made. (At that time also began cell cept and a few other meds) I think I was at 20mg with the first fracture. It was quite the blow because I was finally gaining weight back and getting stronger.