Mayo Clinic Connect
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?
Liked by Ginger, Volunteer Mentor, sheriatrapidcit
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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!
Liked by Nancy, Volunteer Mentor
I have mgus. Did your Dr. drill 3 holes in your hip to test you? If so – were you given anything for pain?
@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.
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
Liked by Ginger, Volunteer Mentor
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.
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?
Liked by auntieoakley
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 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!
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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?
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.
You should ask the doctor you trust with this question, or see an oncologist and ask. MGUS does not usually cause these kinds of issues from my understanding because it does not prevent bone marrow from creating the correct cells. That being said, there might be something else underlying with it that is causing your immune system to be off. There are other things that could be happening as well. I met someone who was told they had MGUS, turned out to be something else entirely and of a more immediate nature. There are so many things besides this that could affect your immune system, but because you have this diagnosis, it pays to be especially careful and double check all the boxes.
Thank you very much…..I need second opinion.
@ginger, so sorry I didn't see your post. Seems I'm not getting notifications. I'll fix that🙂. For bone broth, there are many recipes online. The way I do it, is with beef marrow bones I buy at my local supermarket, meat dept. Grass fed are best, but I've not found them. So I first broil the bones on lined cookie sheet, seasoned with pepper/salt. This melts out plenty of the fat, and adds nice flavor. I then boil them in a HUGE stock pot, with a splash of apple cider vinegar(important)
Once a full boil comes, lower to a very low simmer for a minimum of 36 hours. I leave it on overnight. Added benefits I do are a bunch of fresh parsley, 2 cloves of garlic. It's very long process…when it's all done…cool, chill in fridge, then skim off all fat. I add some tumerick and fresh ground black pepper (catalist for tumerick). I separate batches and freeze. You can add this to your recipes or enjoy a warmed cup full.
I haven't made it in a while, but I'm eating my spinach, broccoli etc. I also have not sceduled a bone density test yet. I had to have a bone marrow test done in June because my bloodwork shows some concerns. No excuse for not taking a bone density, just alot on my plate for now, and family issues. I'll be seeing my oncologist again late October. Check online for bone broth recipes 🙂
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