Mayo Clinic Connect
Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
Liked by Mamacita, Volunteer Mentor, Chris Trout, Volunteer Mentor, Leonard
Hello, I’m new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don’t know what “family” it’s in. Having horrible pain when lying down.
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Hello @miche. Your message caught my attention because I have recently encountered osteopenia and osteoporosis symptoms in my family, and I have a whole lot to learn about them, their diagnosis, and their treatment. I found it interesting that your doctors are endocrinologists while mine is an immunologist. Were you referred to the former? Have you sought treatment from the latter? I also was interested in your linking immune B-cells to the loss of calcium from your bones. I’ve been under the impression that B-cells are produced in the bone marrow rather than the calcium-infused bone itself. As one source of medical information said recently, “B- and T-cells are blood components produced in haematopoiesis. All cellular blood components are derived from haematopoietic stem cells. In a healthy adult person, approximately 10¹¹–10¹² (billions) of new blood cells are produced daily in order to maintain steady state levels in the peripheral circulation.”
Your concern about calcium matches my own for reasons of my kidneys, my heart, and genetic arteriosclerosis as well as osteoporosis. My medical team has focused on the calcium control provided by the parathyroid gland and check that often in my regular lab tests. Is your parathyroid involved in your calcium deficiencies? As to my kidneys, due to a genetic fault, they extract sodium and calcium ions from urine as it leaves my kidneys and returns them to my blood, but fails to reclaim potassium, and that shortage of potassium has led to severe hypertension. So you can see how intensely interested I have become in the subject matter on which you commented, and I’d be grateful for any comments or insights you may wish to share with me.
@jaleen, i like your attitude! Why do so few doctors treat the whole patient or even the whole body? What makes Mayo so successful is the “grand rounds” approach to treating patients–many docs weighing in at once, because we are SYSTEMS not just SYMPTOMS. I think your point about strengthening the skeletal musculature is very important…if your muscles around the bones are strong, isn’t there a protective and proactive benefit there? Glad we had this chat. i’m going to start in on the strength training with gusto this year and insist on a second scan (I feel there must be an error in the first) and just live my damn life drug free as long as I can. i cut my blood pressure medicine dose in half already this year, so there is much to be said about holistic approach to just owning your body and remembering we are animals–that means we should be able to run, jump, move, dart, eat when you’re hungry, stop when you’re not, etc.
Im Venkatesan 55. I have been suffering from Osteoporosis for the past many years. C4 &C5 which was the first problem started. Then followed nervous problems, Small Vessel Ischemic disease, ulnar neuropathy, brain shrinkage etc. Im taking treatement for all the diseases except Osteoporosis. Kindly advice medicines.
WIsh I could help @venki, but it’s too risky for me to make suggestions, given the range of conditions for which you’re already receiving medications — and its too risky for you to rely on anything I might suggest. Your list of conditions suggests issues of your heart, spinal cord, and peripheral nerves as well as your skeleton. I think an expert trusted medical team is your best source of diagnosis and advice as to which drug to consider as treatment for osteoporosis and not undermining your other medications. Do you have access to a top medical service in your community?
Liked by Teresa, Volunteer Mentor
I’ll agree with predictable 100%…after much research. I was taken off Actonel 3 yrs ago due to widespread tormenting rashes. Now Drs insist I needed to start up again since I’m high risk for fractures now. So it’s been 6 mos, and constant rash, scalp itch, worsened hip and back pain. Along with those pleasant symptoms I started getting sweats 24/7. ..im going off, and doing the natural route. Taking good supplements, calcium citrate, and making a home made bone marrow broth..
To name a few. Trying to walk 30 mins, but it’s causing me more pain. I’ll continue helping myself, and wait for this med to flush out.
I see that you are dealing with low bone loss and I was wondering if you are seeing an endocrinologist?
A lot of us who have low bone density also have problems with our parathyroid (different than the thyroid). A special blood test will check the parathyroid hormone levels and can help your doctor understand the loss of bone density. If this hasn’t been checked yet, I would encourage you to talk with your doctor about that. Also, have your blood calcium levels been checked?
Keep posting and let us know how you are doing.
Liked by Martin Jensen, Volunteer Mentor
Hi teresa, thank you for your reply…yes I see an endo, and she has taken bloodwork. Im not sure if the parathyroid was checked. I don’t know the medical term on bloodwork or I would look at my blood test results. Calcium and D, and other tests have been done. Also 24 hr urine to see if I’m spilling calcium. All looked good. I have mgus, which may be a contributor. Im surprised I’m this far along in osteoporosis because I’ve always worked out, very active, and included calcium. They toss it off as age related, and the fact that I’m petite, and on the thin side…??? I will let Drs know I needed to stop Actonel, and if the sweats continue, I assume they’ll do another bloodwork. Trying to wait till my next appt in june..with hopes symptoms will subside by then, being off the med.
Teresa, I just checked the parathyroid tests, PTH , and all were in normal range, taken over a year ago.
Does anyone think progesterone creams help improve osteoporosis? I'm just not sure if it's doing anything…but I'm including a helpful diet, and activity. I'm thinking..to quit the cream. I started this in January, when I took myself off Actonel due to side effects. Please share your thoughts….most internet sites say it's helpful, and some say, it's not.
For reasons best known to the medical community, there is no specialty called "Osteoporosis." On behalf of a friend who is losing calcium dramatically and cannot survive such a condition, who is in great pain, who has fallen five times in the last couple of weeks, and who has been told there's nothing that can be done for her, I am writing to ask for the name of a specialist from any field who can help, or for trials occurring to treat her condition. She is a lovely, middle-age lady who needs help from someone, somewhere. If more information is needed, please let me know.
Liked by Gail, Alumna Mentor, EES1
@trishanna My friend had osteoporosis and Dr .endocrinologist did blood work On her he tested her hormones Vitamin levels and found she had a severe diffency in Vi t D3 he put her on 5000 units ,plus calcium and magnesium told her start weight training 2lbs then increase it, swimming, exercise .Check with your Dr. Hope this helps
Liked by Gail, Alumna Mentor
I have been on prolia injections for 2 yrs with little improvement. My last injection caused a reaction of severe hip pain an severe cramping in my calves. So I think I will discontinue. Don't know what else to do? Any suggestions?
@lioness. Thanks for your reply. I'm going to ask her about her Vit D – very important for all of us but I wasn't aware there was a link to calcium and osteoporosis. My friend is in such pain – from her vertebrae, her intestinal tract (IBS), her shoulder. I think she was working when she lifted something too heavy, but doctors can't seem to decide if she broke her vertebrae or not. Add insurance problems and no money, and it's just tragic. I will push about Vit D – I take 2000 a day.
@gailb Id like to ask about CB D cream I ordered some but am unsure if you use it just when you have the pain or should it be more on a regular basis ? Since you have used it can you us some guidelines?Thanks
@trishanna didn't the Dr.take an xray?That will tell if she has a fractured vertebra Our bodies need minerals of all kinds magnesium Vi t D3calcium does she take a vitamin ,mineral?
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