MGUS and osteoporosis?

Posted by suzye @suzye, Jun 2, 2019

Hi, anyone in this group have MGUS and being treated for osteoporosis? Thanks

Hi @suzye and welcome to Connect.

I wanted to introduce you to fellow Connect members @gingerw @1nan and @anniemaggie as they have experience with MGUS and may be able to share if they had a similar experience.

How long have you been treated for osteoporosis while having MGUS?

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@ethanmcconkey

Hi @suzye and welcome to Connect.

I wanted to introduce you to fellow Connect members @gingerw @1nan and @anniemaggie as they have experience with MGUS and may be able to share if they had a similar experience.

How long have you been treated for osteoporosis while having MGUS?

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@ethanmcconkey Thank you for inviting me in to the conversation. @suzye Welcome to Mayo Clinic Connect! We're glad that you found us here. I hope that you are able to get some questions answered and that we are able to share our experiences with you. I was diagnosed with mgus approximately 2 1/2 years ago. I do not have osteoporosis but I do have other immune issues. It is my hope that others will step up and can give you some good information. Please keep in contact with us. We care here at Mayo Connect!
Ginger

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I have mgus. Did your Dr. drill 3 holes in your hip to test you? If so – were you given anything for pain?

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@mari

I have mgus. Did your Dr. drill 3 holes in your hip to test you? If so – were you given anything for pain?

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@mari Yes, the dr did that to me, also, for the bone marrow biopsies, then applied a pressure bandage. Nope, I did not get anything for pain ahead of time [wish I had, though!]. They marked my chart to pre-medicate me if/when they need to do a biopsy again.
Ginger

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Welcome Suzye. I was diagnosed with MGUS in 2002, and a couple years later, Multiple Myeloma. Over the years I did develop mild to more serious osteo issues. I worked with a rheumatologist who followed, prescribed, and changed as indicated, treatment for those bone issues. During treatment for myeloma, I have received IV Zometa monthly for one year, and now quarterly. I have not had any fractures, although there were bone stability issues for cervical neck surgeries. It helps to learn what treatments are available, when they are indicated, time limits for each type of medication, etc. My rheumatologist was very good at educating me about specifics in preventing and treating osteoporosis. That has been my experience. We all are different and need to find someone who gives us confidence that we can define ourselves and get questions answered. As with everything else, there is no one size fits all. Good luck going forward. Do you feel confident you are getting the medical support you need? Nancy

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I have MGUS and osteoporosis. I was on Actonel, but I stopped them after 6 months, as they made me super achy and rashes. Within 15 minutes of my walk, I was limping from pain in my hips, legs and back. Dr was originally going to do injections, but decided to go easy first with pills…glad I didn't take injections. So I'm on nothing…I eat lots of dark greens, and broccoli, sometimes I make a bone broth, and I take Calcium supplements. I'm due for a bone density in a couple of months…hopefully I'm not any worse.

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@dazlin

I have MGUS and osteoporosis. I was on Actonel, but I stopped them after 6 months, as they made me super achy and rashes. Within 15 minutes of my walk, I was limping from pain in my hips, legs and back. Dr was originally going to do injections, but decided to go easy first with pills…glad I didn't take injections. So I'm on nothing…I eat lots of dark greens, and broccoli, sometimes I make a bone broth, and I take Calcium supplements. I'm due for a bone density in a couple of months…hopefully I'm not any worse.

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I have had my 4th and 5th vertebras fused. Now the pain has returned as I expected. What should I do now? My Dr. just says see the surgeon and he put me on 2000 mg. of vita D.

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Welcome to Connect, @sheriatrapidcit,

I’d encourage you to view this discussion in the Spine Health group, and post your concerns there as well:
Chronic pain and spinal fusion https://connect.mayoclinic.org/discussion/chronic-pain-and-spinal-fusion/

Could you share a few more details? When did you have the procedure?

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@sheriatrapidcit

I have had my 4th and 5th vertebras fused. Now the pain has returned as I expected. What should I do now? My Dr. just says see the surgeon and he put me on 2000 mg. of vita D.

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I don’t have answers, just prayers. But I do have experience with my husband and compression type spinal fractures. We went to Mayo Clinic for his multiple myeloma, he has done two years of arhydia, not sure of spelling. Also much higher doses of vitamin D. My husband is on a 5 lb limit for life and he is careful, but he walks almost daily. I would encourage you to seek out a doctor specializing in bone health. My heart goes out to you.

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@dazlin

I have MGUS and osteoporosis. I was on Actonel, but I stopped them after 6 months, as they made me super achy and rashes. Within 15 minutes of my walk, I was limping from pain in my hips, legs and back. Dr was originally going to do injections, but decided to go easy first with pills…glad I didn't take injections. So I'm on nothing…I eat lots of dark greens, and broccoli, sometimes I make a bone broth, and I take Calcium supplements. I'm due for a bone density in a couple of months…hopefully I'm not any worse.

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@dazlin Checking in with you to hear about your bone density scan results, if you care to share. I hate to be so silly here, but what do you do to make bone broth? Will any type of bone do? I am always interested in more natural styles of remedies, rather than chemicals, when possible!
Ginger

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@suzye How are you doing? How is your MGUS and osteoporosis situations affecting your everyday life? Do you have any tips for us in changing diet or the way we advocate for our own health, please?
Ginger

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Do any of you with mgus have issues with feeling sick with colds, sinus, etc. often? And taking antibiotics often? I was just diagnosed with this and not given any information on what to do. I rarely feel really well….I am 83, and am scared of this diagnosis…..am tired a lot too.

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