Are you taking Reclast for osteoporosis?

Posted by Becky, Volunteer Mentor @becsbuddy, Jul 21, 2020

Two years ago I was diagnosed with pretty bad osteoporosis because of the prednisone I was on for my autoimmune disease. I started taking Fosamax (a bisphosphonate) and had no problems. Today, the endocrinologist suggested that I switch to Reclast for 3 yearly infusions. Has anyone else taken this drug? What side effects have you had?
Thanks

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Google comb protocol for bone health. I believe it was a Japanese study that improved bone density in one year. Hi dawn. Today I go to specialist and will see what she says. I will not take a drug that can cause my thigh bone to fracture or my jaw bone. This problem is acknowledged by the FDA

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@ymv I did not start with a full dose. The first dose I took was the full 80mcg and I landed in the ER (preexisting afib). I was determined to take itand started at two clicks out of 8 and ramped up. I mostly take 7 clicks, sometimes 6, a few times the full 8. I have had excellent gains with a partial dose and my doc approves.

Side effects do ease over time as your body adjusts to it. Some days I have none, and some days I still have them even at 7 clicks. I have learned it is better to get up and out in the morning after I take it. I do not take it in the evening because I am more prone to afib then. (Haven't had any since...)

Side effects for me include the brief rapid heart beat (better after a month or two), nausea (better after a month), headache (also eased) and the most long lasting has been fatigue, which, again, I counteract by going out and doing what I need to do. It is worth it! Or has been for me. And some people have NO side effects. I am extraordinarily sensitive to a lot of meds, have several other conditions, and am small in size.

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@rtelega

Read about COMB protocol for osteoporosis. I started it a few months ago. It’s all vitamins and minerals. They did a study and it showed improvement in the osteoporosis. It does not shut down your osteoblasts and osteoclasts as Fosamax does. Please do research and read everything. Make sure to use the correct strontium (citrate). You have to do wright bearing exercise. Elliptical is perfect. I will repeat my BD in one year. I will have to self pay but that’s all right. Good luck everyone on your quest for good health.

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@rtelega the COMB protocol includes the therapeutic strontium dose of 680mg. It is important that people know that strontium throws off future DEXA scans at that dose, because strontium replaces calcium in the bone and is denser. Also, strontium does have possible cardiovascular side effects.

When I looked up the COMB study I also saw that strontium is less effective for awhile after a bisphosphonate.

If osteoporosis is severe, this protocol may not work quickly enough or intensely enough so a bone builder may be needed. Ask your doc!

(Tymlos and Forteo do not cause the atypical fractures and dental issues that bisphosphonates and Prolia do, and are more effective if taken first according to studies. I would check if the COMB protocol affects the effectiveness of those meds.)

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What is the COMB Protocol? I have taken Fosomax, Forteo, Evenity and am now fighting any more chemicals. I am looking desperately for a non-toxic answer. Thanks v ery much.

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@mbgcx

What is the COMB Protocol? I have taken Fosomax, Forteo, Evenity and am now fighting any more chemicals. I am looking desperately for a non-toxic answer. Thanks v ery much.

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Vitamin D3 2,000 iu daily
Fish oil Dha 250 mg daily
Strontium Citrate 680 mg daily
Magnesium 25 mg daily
Vitamin K2 100 mcg daily
Dietary consumption of calcium
Weight bearing exercise

If you take vitamin d you must have the K2 to absorb it. No one ever told me this!

Read the results of the study. You will be impressed. I’m not a doctor I’m just telling you what I learned from research. I would bet your doctor never heard of this study.

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@windyshores

@tucsonnancy thank you so much for posting this. I am sorry that happened to you but your story is very helpful to me and probably others. I am about to finish my first 18 months of Tymlos and like you, have had excellent gains. I have several spinal fractures and do not want to go backwards! Good luck with the Tymlos!

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Thanks for your kind words. I hope you continue to improve -- spinal fractures don't sound like fun. Do you have to stop the Tymlos after 2 years, and do you have a plan for afterwards?

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@ymv

@windyshores , I’m going for my Tymlos training today and eager to begin treatment but concerned about the side effects. What have you experienced and how do you manage them?

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Greetings @ymv. I want to welcome you not only to Connect but to the Tymlos option for controlling Osteoporosis. Like @windyshores, I completed two years of Tymlos without even one side effect. I turned to Tymlos after experiencing side effects with Boniva, a bisphosphonate. Good luck with your developmental journey. Please stay in touch with us on Connect. There are so many folks who read responses on Connect even though they do not post themselves. We need you to be part of our group and to keep us informed.

Thanks,
Chris

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@tucsonnancy

Thanks for your kind words. I hope you continue to improve -- spinal fractures don't sound like fun. Do you have to stop the Tymlos after 2 years, and do you have a plan for afterwards?

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@tucsonnancy I am doing 18 months and Dr. McCormick did a blood test (P1NP) that showed it is no longer really working. My endo wants me to stop there anyway. With my ramping up slowly on the dose, the starting date is unclear, so it may be more like 20 months.

My regular endo wants to do Reclast but at a 20% dose due to my med sensitivities. I want to ask for IV hydration first. It is scheduled for 7/10. My kidney function has dropped so I am worried.

I met with Dr. McCormick in person and also made an appointment for a second opinion with another endo whose reviews are excellent. I want to ask about doing Evenity after the Tymlos because my femur neck is still -3.6 and the other scores, while dramatically improved, could be better still, and with fractures my risk of more is high.

My regular endo says there is no data supporting that. I have sent him a few posts from forums where people are doing Evenity after Tymlos or Forteo. I first got the idea from a masterclass with Lani Simpson. The hospital endo is conservative but I understand his position and respect it. I just want another opinion.

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@rtelega

Read about COMB protocol for osteoporosis. I started it a few months ago. It’s all vitamins and minerals. They did a study and it showed improvement in the osteoporosis. It does not shut down your osteoblasts and osteoclasts as Fosamax does. Please do research and read everything. Make sure to use the correct strontium (citrate). You have to do wright bearing exercise. Elliptical is perfect. I will repeat my BD in one year. I will have to self pay but that’s all right. Good luck everyone on your quest for good health.

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What is COMB protocol?

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In reply to @bruceandruth1970 "What is COMB protocol?" + (show)
@bruceandruth1970

What is COMB protocol?

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@bruceandruth1970 the protocol is below (and posted previously by another poster). Please note that this dose of strontium throws DEXA scans off, and also that strontium is not without risk (at least the ranelate form).

Vitamin D3 2,000 iu daily
Fish oil Dha 250 mg daily
Strontium Citrate 680 mg daily
Magnesium 25 mg daily
Vitamin K2 100 mcg daily
Dietary consumption of calcium
Weight bearing exercise

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