New DX with a lot of Confusion and Stress
Recently diagnosed w/"severe" OP at 61 following an overexertion lumbar fracture. I also fractured 2 lumbar vertebrae 4.5 years ago from an accident. I've seen endo and they are recommending Evenity followed by Reclast or Reclast only as a 2nd choice. Not thrilled w/Reclast - or any bisphosonate - because of the risks of kidney and jaw bone damage.
DXA scan scores: Spine L1, L3
BMD: 0.832 g/cm2, T-score: -2.8, Z-score: -1.4
Left Total Hip
BMD: 0.656 g/cm2, T-score: -2.8, Z-score: -1.7
Right Total Hip
BMD: 0.604 g/cm2, T-score: -3.2, Z-score: -2.1
Mean Bilateral Total Hip
BMD: 0.63 g/cm2, T-score: -3.0 , Z-score: -1.9
Left Femoral Neck
BMD: 0.603 g/cm2, T-score:-3.1, Z-score:-1.8
Right Femoral Neck
BMD: 0.576 g/cm2, T-score: -3.3, Z-score: -2.0
All bloodwork came back w/in normal range except my Vit D was high (74.5) but I do take a quality D3/K2 which is now reduced to 3x/wk.
Light chains also showed high free Lambda (35.9), Normal Kappa (18.4) and Normal Ratio (0.51)
24 hr Calcium in urine was high (387.9) so endo doesn't want to try Tymlos or Forte which was the orignal plan pending blood tests.
I did read that high Vit D can cause high calcium in urine. Should I ask for the test to be repeated now that my Vit D was adjusted?
They do not want me to take a Calcium supplement believing I have adequate dietary intake. I also take Mag at night.
I've been reading multiple posts here many with differing personal opinions or results. Endo understands I'm hesitant to take any meds but specifically ones that can ultimately do more harm than good. I asked his nurse practioner why there's no mention of nutrition or excercise in the treatment plan with literally no answer.
I'm in PT from the recent fracture at the end of October and subsequent vertebroplasty on Dec 1st where, after core strengthening, we will be focusing on lifting. I keep prodding PT for an Osteo specific treatment plan, but they state they don't normally see patients to develop a program like that. Odd, because my Drs are all associated with one of the largest teaching hospitals in the Midwest!
I'm scared - scared of taking the meds and scared of not taking them. Endo said my risk related to a fall and fracture are greater than the risks of taking meds. When I asked the "what if" of jaw necrosis, he replied he would find me a great oral surgeon. Has anyone done just Evenity for 12 months and not followed up with another biphosonate med? What are the risks? Asking because the one other test I researched -C-Telopeptide, Beta-Cross-Linked, Serum was normal for my age - 525 pg/ml and since this is a biomarker for bone resorption do I need a drug to slow that down?
I have a desk job which doesn't help to have gravity make my bones stronger. I recently ordered a sit to stand desk and have been standing for the majority of the day. Looking into programs offered at our local Y and open to suggestions!
Too new to this to wrap my head around it all. Looking to the many experts on this site who can calm my nerves and provide guidance.
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@gently says the P1NP fragment is left in the bone, meaning to say the fragment is left in the blood. Proofreading does not seem to help her.
@gravity3 howdy…none that I know of, my endo started with fosamax and is continuing with reclast…I did not know that a lot of times people start with anobolic meds and if they work a transition to bisphosphonates follows. One doc I saw during my research (saw all the med pros that treat OP from orthopedic surgeon to endo to gynecologist to primary care to to rheumatologist, only the rheumatologist said she would have started me on an anabolic. She also felt that I was taking too much calcium at 1200 mg per day, but that’s what my current endo wants me to take. So clear as mud! I’m also on 50,000 Vitamin D2 per week, almost 2 years with good levels of D but no indication of ramping back on that.
@2young4bones I would never tell someone treatment or not. After the person does their due diligence, then they decide. I spoke with an orthopedic once and he said the drugs make the quality of your bones worse.
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1 Reaction@2young4bones all drugs have risks.
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2 Reactions@gravity3 It is maddening when they (endocrinologists and other physicians) do not follow the findings of medical societies they are part of and which provide their certifications to practice medicine. It is also maddening that I have to make an appointment and pay for an office visit to find out their "stance" on HRT/BHRT. I had an experience with an OB-GYN who would not prescribe HRT unless I got a D&C; he initially was going to require me to have endometrial ablation before he would prescribe the HRT. I challenged him on the endometrial ablation procedure as I had NONE of the symptoms indicating that procedure and my insurance would not pay for it. I did have to get a D&C and anesthesia--totally unecessarily, just to get the HRT prescription. Not surprising, this doctor owns the clinic locally that does endometrial ablation. You know, when you have the hammer, everything looks like a nail. He also did not give me the correct HRT medications for someone with a uterus; he prescribed the estrogen patch and micronised progesterone to be taken 2 days per month, i.e. he was setting me up to need an endometrial ablation.
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3 Reactions@dvargo That orthopedist is ignorant and he's wrong. I would never listen to an orthopedist about osteoporosis. That is not their area of expertise.
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1 Reaction@njx58 Well maybe it is because he replaces the hips with metal plates all day long. I was surprised he was so candid with me.
@dvargo If he outright told you that osteoporosis drugs, in general, weaken bones, he's incompetent.
He said the drugs change the natural formation of bone building and once you start the drug you are on them forever. Again, I sat next to him at a wedding. I probably will not see him again.
@pd999 You should be taking Progesterone every night. The medical community is set up for profit.
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