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, parrotqueen
Has anyone received their 1st BMD scan with a low t-score, like -3.1 in the spine, and been prescribed Forteo? I’m 50 and a little freaked out as I thought I doing a baseline BMD scan. I have no underlying conditions that can explain the extremely low score. Family history of estrogen-receptive cancer puts HRT out of the question. I would like to wait a year, increase calcium/vit D/exercise, and get another scan. Thoughts?
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@faith123 Thanks for updating us on your treatment. I also hope that the infusion is helpful to you. Teresa
Liked by GailBL, Volunteer Mentor
Hi @heritage1955, I too was just diagnosed with Osteoporosis in April. I’m at -3.7 and I’m only 52. I was pretty shocked at how bad it is. My doctor put me on Forteo, which is the only medication that builds bone. I give myself a shot every day. It’s really not as bad as it sounds, the needle is so small I barely feel it. And, of course, I have upped my calcium intake. I try to take 500 mg three times a day. I read at the Mayo Clinic website that your body can only absorb 500 mg at a time, so anything above that is just a waste. But if you take Protonix or anything to help acid, you need to take the calcium at least three hours a part. The medication keeps you from absorbing the calcium. It’s hard to do when you take Protonix twice a day as I do, but I get up early to take my meds so I can get my daily calcium. I also take 2000 IU of Vitamin D every day.
Liked by Justin McClanahan, Kanaaz Pereira, Connect Moderator
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.
My bone density has progressively worsened. I have a family history of osteoporosis and I am only 65. My number last year was -2.9. Last year I was prescribed fosomax, but could not tolerate it with my digestive issues. So I was given a Reclast infusion. I hydrated well prior to and took one advil; I had no negative side effects. I have been on Vitamin D, 1200mg of cLcium, and weight bearing exercise for a year. This year my scan was -2.9.
I had a physician mention that due to my complete lack of sun exposure (pre skin cancer issues) that the vitamin D and calcium could not be utilized. He recommended a UV light with full spectrum UV To help activate the vitamin D. I just purchased it and will use it a few minutes when I am nude after showering. We shall see if this helps.
I have had three Prolia shots to date. I can’t really identify any side effects that I attribute to the Prolia. I am also taking Arimidex (fifteen months now) as follow up treatment for breast cancer, so it’s hard to always know where to place the “blame” when something goes out of wack. The Arimidex has the possible side effect of causing or aggravating osteoporosis, which I was diagnosed with right after my breast cancer surgery, when they put me on the follow up drugs. I am doing everything I can to rise victorious over all of this. I’m 60 years old, but in my mind I’m still 35. I am not giving in easily to age or illness.
Liked by Colleen Young, Connect Director, rosysharon, GailBL, Volunteer Mentor
Good for you; keep up that attitude. God bless.
I started treatment with Reclast; an infusion that takes about 20 minutes. You get the infusion once a year. I’ve never had any side effects. Best thing is my bone density is improving.
Liked by Teresa, Volunteer Mentor, GailBL, Volunteer Mentor
Hi @leannz, I am 81 and also not giving in easily to age or illness. I am in weekly PT for a rare form of Muscular Dystrophy for 3.5+ years. My therapist writes for me how far to walk each day as I have measured about 95 routes around the retirement campus here. He usually states it as 0,5 miles and I pick what I want to walk that day within the 0.5000 – 5.9999 mile range. One day I wrote down about 10 distances within a range he wanted me to walk and asked him which route did he think I’d chose. Without looking at my paper, he said, “I KNOW you. You’d pick 0.5999999999999.” Since August, 2016, I now have walked 100 MILES! I bought a cake at 50 and 100 miles for him and his staff.to celebrate. We have fun together but I work hard to see his smile! @gailfaith.
Liked by rosysharon, GailBL, Volunteer Mentor
@bonnieh218 I appreciate your sharing the good results with Reclast. Teresa
@gailfaith You sound like a delightful 81 year old! I’m sure your doctor and his staff must enjoy working with you. You mentioned having a rare form of Muscular Dystrophy. If you are comfortable sharing more about that diagnosis, it might be helpful to our other members. For example, is there a name for the MD diagnosis. What type of symptoms do you have and how long did you have them before you were diagnosed? Teresa
I had a dexa scan 2 years ago that showed me at -2.5% osteopenic. My new doctor did a new scan this spring, without telling me the % number. He wants me to start taking Fosamax and I keep putting it off. He says I’m at high risk for broken bones. In truth, in the last 9 years I have had a broken elbow and compression fracture of my C7 from falls. I’ve never before broken any bones, so I suppose these could be from osteo problems. My grandmother went from 5’6″ to 4’11” from 65 to 80 years old, so it runs in my family. If I’ve had no change in the % between the 2 scans, I don’t want to start any medications.
To complicate matters, I had gastric bypass weight loss surgery 3 years ago. Some people have experienced problems with losing teeth and calcium after this surgery, but I suspect it’s because they weren’t taking their vitamins. I have faithfully taken my vitamins since my RnY surgery, including 500 mg of calcium 3 times a day. I take the recommended calcium citrate because it is more easily absorbed. Because of my surgery, my digestive system is compromised. I don’t think taking osteoporosis medication by mouth is a good way for me. I am also insulin dependant, so I am used to daily shots.
I have read a lot about the different types of medications to treat osteoporosis and none sound good. I told my doctor I would talk with him about this at my next appointment in September. Do any of you have similar challenges to mine and if so, what steps have you taken successfully? In contrast, what problems have you experienced that have led you to stop or change the way you are treating the problem? Thanks for those who have already posted about your experiences. Gail B.
hi gail: I too am not a fan of taking these very dangerous drugs called biophosphonates to help with osteoporosis. So I don’t do anything except drink more milk with calcium, and taking 2000 units of Vit. D. I’m also wondering if I should take Fosamax, what to do, what to do, I’m in a quandry. My walking is becoming very difficult. Caress
Just dropped by when I saw @caress back again. We shared some ideas several months ago. Today she said she’s not a fan of bisphosphonates. She’s also wondering about taking Fosamax. Others have suggested that Fosomax and Reclast have reversed their osteoporosis. NO THEY HAVEN’T! For the last three years or more, the FDA has had a lot to say about Fosamax, Reclast, Boniva, and other drugs which are bisphosphonates. The FDA message: These drugs prevent calcium from leaving the bones, but do nothing to rebuild them. If bone density is improving, something else deserves the credit — probably the patient’s good sense and strong-willed determination to “beat the rap.” I got into this because my wife — who was diagnosed with osteoporosis 12 years ago — took Fosamax for several years, but a switch in primary care doctors put an end to that. Follow-up bone exams dropped that diagnosis, changed it to osteopenia (less drastic), dropped prescription medication, and switched her to calcium supplement and Vitamin D3 supplement — both at relatively moderate levels. Her heavy exercise regimen also has put her in a place where her bones are almost invincible. Finally, her primary care physician ran some lab tests to see about the status of her parathyroid glands and found them to be in good shape — totally capable of handling the role of managing calcium levels in blood and bones. Hope this information is helpful again now as it was a year ago. Martin
Hi Teresa….that was submitted to Connect long time ago. Maybe Colleen can find and resurrect it if you think worthwhile.! The Mayo Dx back in Nov 2013, was Myotonic Dystrophy type 2. Not sure when submitted to Connect. I see you joined before me in 2016, so maybe you have seen it. I have been known to play practical jokes on some of my doctors and therapists! But they unknowingly set them selves up for it! Strange, I never thought of my self as a practical joker! gailfaith
@gailfaith Hi Gail: I found an earlier post about MD – it appears as if the MD was connected to a shot for your knee – is that correct? Teresa
hiMartin: My rheumatologist suggested I get my calcium in foods, but now am wondering if I should take calcium supplements too. If I may ask how
much Vit. D is your wife taking? I take 2000 Vit. D wondering if I should take more. Thank you for your report.
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