Did you have Digestive Issues with Osteoporosis Treatment? What to do?

Posted by cardinal26 @cardinal26, Aug 26, 2020

Hello all! I need to decide on next step for osteo treatment and have been so overwhelmed and frozen with fear on what to do. Hoping you can guide me with your stories and advice. I am in my late 50's and have been treated over the years using Fosamax (18 months), Forteo (2+ years) and now I'll need to go on something else. My spine is -4.1 and hip is -1.4. I have suffered from life-long gut issues and after multiple doctors and tests, IBS has been the continued diagnosis. I had heard that because of my IBS I have secondary OP as I have also been diagnosed with malabsorption, inflammation and dysbiosis. I am being treated for these conditions the last few weeks, so far with much success. I have also heard that I need to get my gut healed before I can expect the OP to get better. I recently saw a rheumatologist who is recommending further blood work as well. Because of my gut issues, annual Reclast infusion has been the med recommended for me because it does not enter the GI tract. But I am terrified of the risks and side effects.

Thoughts on what I should consider? Who else I should see? What would you do?

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@lioness

@hopeful33250 My. Next bone density will be next July unless I can get one sooner but yes I,LL let you know what it is and if am improvement I have a T score in hip of-1.3 femoral neck T-2.2 at last dexascan Dr said the Reclast is only once a year that's why I decided on this one

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Once a year is a nice schedule, @lioness. I would agree with that wholeheartedly!

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Hi, @cardinal26, While I don't have the GI issues you report, I have been on osteo meds for years, including the two you mentioned. This is my 4th or 5th year for my annual Reclast infusion. I am happy to report no side effects; the procedure is easy and takes maybe 10-15 minutes and until the Dexa Scan results last year, each infusion revealed slightly improved density results. Last yr showed no improvement but also no decline and the doc said that at this point, the goal is to continue to maintain current levels.

With a stage 3 chronic kidney disease diagnosis (ckd) a yr ago, I read an article saying that Reclast was not advised for some ckd patients. Alarmed, I researched other meds and Prolia was mentioned as an option. I called before my appt and my doc assured me that I could take either; I stuck with Reclast. From what I'd read, Prolia seemed to present more side effects...and may need to be taken? every 6mos vs 1/yr with Reclast.

Ironic the timing of your post for me. I'd checked my last scan date and realized I was already a couple of months behind. Just yesterday I called my doc's nurse for help in scheduling my annual Dexa Scan telling her I was behind. Because of the kidney and compromised lungs, I have been very strict in self-isolating due to Covid and hoped for an early morning density scan. My clinic has a large waiting area, with one area designated for labs and the opposite for machine administered tests. I was surprised to learn that due to imposed restrictions on the number of patients allowed at one time, requests now for mammagrams are being scheduled in mid-January at this clinic. I'd not given a thought to possible scheduling delays for tests. She promised to alert the schedulers in her request for my appt. It was a happy surprise this morning to get a call offering an 8:30am bone density appt. on Sept 30th! Surely beats having to wait months.

Medicare requires the Dexa results prior to scheduling/receiving the infusion so there is a customary wait for the Reclast office to schedule.

Again, I can't speak to your GI or other health conditions but would definitely encourage you to decide on your plan of action as soon as you can because I'd not considered delays in treatment. With the osteo, my only added meds are taking 1200 mg of calcium daily and 5000 mg of Vit D 3 daily but each patient's condition differs. As with each prescription I take, a long list of possible side effects is enclosed. Sometimes they sound more dreadful than the malady they are to treat. I am happy and relieved to be taking Reclast with no side effects because it is helping me sustain my aging bone density levels. Best to you going forward.

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@fiesty76 I'm glad to hear you have been on Reclast infusion as I'm just starting Sept 1I was told I probably won't have any side effects maybe flu like symptoms was this your experience?

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@lioness, Of course every patient is different but I experienced no side effects whatsoever. Hoping the same goes for you as well!

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Have any of you dealing with osteoporosis read Dr. Lara Pizzorno's book "Your Bones". It describes how our bones grow continually, how various meds affect the process, etc. The meds usually being prescribed are apparently not helpful in the long term, even if a bone scan appears to show improvement in the short term. The risks, such as bone necrosis, make this approach quite risky. I'm going with a calcium based formulation and strontium.

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@criss

Have any of you dealing with osteoporosis read Dr. Lara Pizzorno's book "Your Bones". It describes how our bones grow continually, how various meds affect the process, etc. The meds usually being prescribed are apparently not helpful in the long term, even if a bone scan appears to show improvement in the short term. The risks, such as bone necrosis, make this approach quite risky. I'm going with a calcium based formulation and strontium.

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Hello Criss, I take New Chapter Bone Strength. It's a plant-based algae calcium, supposed to be easier to digest. It has the vitamin Ds and Ks and Strontium. I've heard that Boron is good too, but they may do the same thing. It may be too much of something if it had both. There are websites saying Strontium can be bad for you but I haven't read them yet. I split my dose between b'fast and dinner. BTW, my nutritionist told me Vit Ds need fat to do their thing w/ calcium absorption. I have to add a teaspoon of oil w/ meals that don't have any fat in them. I have a myriad of diseases and severe osteoporosis. Have already broken 3 pelvic, one rib and one foot bone. I'm steroid dependent having been on them for about 30 years. I'm 67. My recent DEXA scan reported I'm 13% worse in my spine and 14% worse in my hip. I've had "severe" osteoporosis for years and my Endocrinologists have been trying to get me on the Bisphosphonates for years but I'm too concerned about all the side-effects. My Endo wanted me to try Alendronate b/c it's only 3 months however, my dentist told me yesterday that it has a VERY long half-life and stays in your body for DECADES!!!!. I've already had my vital organs and more, harmed by my medications. Also, Bisphosphonates are immunosuppressants so if I were to take them, I would then be on 3 immunosuppressants a day. I was for years but had to quit Plaquenil (Hydroxychloroquine which I would take in a heart beat were I to get Covid), bc it caused tissue death in my retina. The New Chapter is however, supposed to be one of the best. Many blessings, Sunnyflower

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@sunnyflower

Hello Criss, I take New Chapter Bone Strength. It's a plant-based algae calcium, supposed to be easier to digest. It has the vitamin Ds and Ks and Strontium. I've heard that Boron is good too, but they may do the same thing. It may be too much of something if it had both. There are websites saying Strontium can be bad for you but I haven't read them yet. I split my dose between b'fast and dinner. BTW, my nutritionist told me Vit Ds need fat to do their thing w/ calcium absorption. I have to add a teaspoon of oil w/ meals that don't have any fat in them. I have a myriad of diseases and severe osteoporosis. Have already broken 3 pelvic, one rib and one foot bone. I'm steroid dependent having been on them for about 30 years. I'm 67. My recent DEXA scan reported I'm 13% worse in my spine and 14% worse in my hip. I've had "severe" osteoporosis for years and my Endocrinologists have been trying to get me on the Bisphosphonates for years but I'm too concerned about all the side-effects. My Endo wanted me to try Alendronate b/c it's only 3 months however, my dentist told me yesterday that it has a VERY long half-life and stays in your body for DECADES!!!!. I've already had my vital organs and more, harmed by my medications. Also, Bisphosphonates are immunosuppressants so if I were to take them, I would then be on 3 immunosuppressants a day. I was for years but had to quit Plaquenil (Hydroxychloroquine which I would take in a heart beat were I to get Covid), bc it caused tissue death in my retina. The New Chapter is however, supposed to be one of the best. Many blessings, Sunnyflower

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Oops, I have been doing some reading, and strontium that is in my phone supplement mentioned in my last post, apparently is a heavier atom than bone and actually replaces places bone inside your bones can alter the results of the bone study scan. Boron however is much better I am going to change my supplement and make sure Boron is in it and not strontium. Of course supplement should have the right kind of calcium the two vitamins D's the two vitamin Ks as well. Supposedly the calcium in the plant-based algae supplement is easier to digest. Take good care, Sunny flower. @criss

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@sunnyflower

Oops, I have been doing some reading, and strontium that is in my phone supplement mentioned in my last post, apparently is a heavier atom than bone and actually replaces places bone inside your bones can alter the results of the bone study scan. Boron however is much better I am going to change my supplement and make sure Boron is in it and not strontium. Of course supplement should have the right kind of calcium the two vitamins D's the two vitamin Ks as well. Supposedly the calcium in the plant-based algae supplement is easier to digest. Take good care, Sunny flower. @criss

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@sunnyflower That is the protocol I'm on I have been on Boron also calcium Citrate is what the Dr ordered and said it was the best form

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@criss

Have any of you dealing with osteoporosis read Dr. Lara Pizzorno's book "Your Bones". It describes how our bones grow continually, how various meds affect the process, etc. The meds usually being prescribed are apparently not helpful in the long term, even if a bone scan appears to show improvement in the short term. The risks, such as bone necrosis, make this approach quite risky. I'm going with a calcium based formulation and strontium.

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Hi @criss, welcome to Connect.
The full title of the book by Lara Pizzorno is "Your Bones: How You Can Prevent Osteoporosis & Have Strong Bones for Life Naturally." Lara is a medical writer, but not an MD. Jonathan Wright, MD, is listed as a contributor.

Do they discuss the difference between prevention and treatment or approaches once one has a diagnosis of osteoporosis?

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@hopeful33250

Once a year is a nice schedule, @lioness. I would agree with that wholeheartedly!

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I will be getting my reclast infusion aug, 9th. My osteo. is pretty bad. I am 70. How has this med. been working for you? ncylucyann

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