Anyone have MGUS and being treated for osteoporosis?

Posted by suzye @suzye, Jun 2, 2019

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

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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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When I was a kid, I was born in the Middle of the Great Depression ( was born in 1931). My parents di not have any welfare, and my mother had to make due with what she had. She made a soup that might interest you. She sent me to the butcher shop to get a bone (butchers gave them free and they were usually large bones that still had the marrow) and then she would send me to the corner grocery store for 10 cents worth of soup greens). The bone was put in a large pot of hot water to simmer for sometime, the greens were added with a potato, lots of rice (my father worked in a rice mill, when work was available, and was given 1 pound of rice a month). probably a carrot or rutabaker, an onion if we had one, and some organ meat (heart, liver, sweet breads etc.) My dad could get these free from the slaughter house, no one bought these organ meats and all of this was allowed to simmer for quite a while. Time to serve, bone removed. I did not have milk, it was too expensive, and the only time I did have milk was when a child who had paid for milk at school did not come to school. I might be one of the lucky ones who got milk that day. I think you would think I had rickets, but never did. Mom's soup saved the day.
Gina5009

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I have MGUS, and just found out that I have osteopenia. I just upped my calcium supplements.

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@isabellebeal

I am being monitored yearly for MGUS and possibly coincidentally I am osteoporotic in my femur hip (osteopenia in spine and total hip). My MGUS blood test results have been in the non-alarming range so far. My bone doctor wants me to start medicine for osteoporosis but I react badly to the ones I've tried (Fosamax, Acronel) and am instead eating well (lots of calcium and Vitamin D) and walking briskly 3-5 miles a day. My doctor says to "Keep moving!" so I do. My only symptoms so far are lower back pain that comes and goes. I am a 72-year-old woman, by the way.

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@isabellebeal Welcome to Mayo Clinic Connect! Good for you, being proactive in your health, and getting that walking in. I'll bet you are an inspiration to others in your neighborhood? Perhaps you can invite them to join you in your walks.

I confess I don't know anything about medications for osteoporosis. Are there others to consider beyond the two you mentioned?
Ginger

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@isabellebeal

I am being monitored yearly for MGUS and possibly coincidentally I am osteoporotic in my femur hip (osteopenia in spine and total hip). My MGUS blood test results have been in the non-alarming range so far. My bone doctor wants me to start medicine for osteoporosis but I react badly to the ones I've tried (Fosamax, Acronel) and am instead eating well (lots of calcium and Vitamin D) and walking briskly 3-5 miles a day. My doctor says to "Keep moving!" so I do. My only symptoms so far are lower back pain that comes and goes. I am a 72-year-old woman, by the way.

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I don't have MGUS so others will opine but do know something about osteoporosis, which I'm hoping to stave off. There are a lot of choices for osteoporosis meds. I consulted with an endocrinologist and learned a lot for if/when I might have to consider them. I have osteopenia and took a DEXASCAN result from 6 years ago to my new PCP who wanted me to consider a bisphosphonate. (I did and said, nope,)

There was essentially no change between that DEXA and one done two months ago. In fact the lumbar spine number improved over 6 years for reasons unknown and I attribute to eating more ice cream. 🙂 though the PCP rolled his eyes at the thought and reminded me about cutting way back on sugar.

My point is that, maybe, the rate of change of bone density is getting under-appreciated by the medical community in lieu of reacting to a point-in-time DEXA. Maybe I lost bone earlier in life and have better diet and exercise regime now and have stabilized? At any rate, my PCP now thinks osteoporosis meds are unwarranted today.

There are a lot of proactive steps people are using to slow-down bone loss. Maybe a second opinion of your status would be helpful? There are a lot of topic threads on osteoporosis here as well.

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I am being monitored yearly for MGUS and possibly coincidentally I am osteoporotic in my femur hip (osteopenia in spine and total hip). My MGUS blood test results have been in the non-alarming range so far. My bone doctor wants me to start medicine for osteoporosis but I react badly to the ones I've tried (Fosamax, Acronel) and am instead eating well (lots of calcium and Vitamin D) and walking briskly 3-5 miles a day. My doctor says to "Keep moving!" so I do. My only symptoms so far are lower back pain that comes and goes. I am a 72-year-old woman, by the way.

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@cctoo

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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I have MGUS and Hashimotos. I am more easily tired than I used to me. I could be wrong but I was told that with MGUS you can get sick more easily b/c your immune system is weaker. I also have osteoporosis which was caused by either the MGUS or previous hyperparathyroidism. I was diagnosed with MGUS and hyperp. within a couple months of each other and the previous year had to have one of the parathyroid glands removed. Both the hyperparathyroidism and the MGUS I believe can weaken the bones.

I was concerned with the initial diagnosis but was told there’s only a 1% chance of it changing over to MM with each passing year. I have an excellent oncologist in Boston that screens me every year, so I won’t worry about it unless it changes to MM.

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Just saw your post. I’m treating with Reclast once per year for 5 years and then revisit with dexa scan.

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@iain49

Hi - 49 year old male here in chronic pain for 7 months now, just recently diagnosed with MGUS and Osteoporosis in lower two vertebrae. Six months ago I had a ct-scan that revealed enough of a problem to warrant 2 prescriptions on spot: Dilaudid for the pain and Lyrica for what was diagnosed as symptoms related to nerve damage. I take the Dilaudid as needed, sometimes as much as 8mg a day, and am taking 4x75mg of Lyrica daily. Today, I was given Fosamax and the Calcium/Vitamin D everyone here knows too well. I'm currently on a waiting list for an MRI which I'm told should be further revealing. My hematologist today told me that he'd never seen such an advanced case of osteoporosis in a 49-year old male... someone who, despite being lactose intolerant, still enjoys milk, yogurt and dairy products. Clearly, something is preventing Calcium and Vitamin D from being properly absorbed into my body. (My guess). I'm wondering if there is anyone else out there, in my age range, dealing with what my hematologist described as "the lower spine of a 75-80 year old woman".
What can cause this in someone of my age? Any research or ideas or experiencers out there with some insight? Bless -

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I have compassion for where you are. My husband has multiple myeloma with collapsed vertebrae in his lower spine. My own spine at 50 was like yours, from lack of estrogen after breast cancer in my 30s. It was not really addressed for a few years as I was not under the care of an oncologist anymore. I resumed care with a medical oncologist who finally addresses this. I do take injections without incident and it is helping. Yes, I feel a little achy the day after but that is all. I know this does not really answer the “why” for you, but maybe knowing you are not alone and there are things that help can ease your mind a bit.

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@iain49

Hi - 49 year old male here in chronic pain for 7 months now, just recently diagnosed with MGUS and Osteoporosis in lower two vertebrae. Six months ago I had a ct-scan that revealed enough of a problem to warrant 2 prescriptions on spot: Dilaudid for the pain and Lyrica for what was diagnosed as symptoms related to nerve damage. I take the Dilaudid as needed, sometimes as much as 8mg a day, and am taking 4x75mg of Lyrica daily. Today, I was given Fosamax and the Calcium/Vitamin D everyone here knows too well. I'm currently on a waiting list for an MRI which I'm told should be further revealing. My hematologist today told me that he'd never seen such an advanced case of osteoporosis in a 49-year old male... someone who, despite being lactose intolerant, still enjoys milk, yogurt and dairy products. Clearly, something is preventing Calcium and Vitamin D from being properly absorbed into my body. (My guess). I'm wondering if there is anyone else out there, in my age range, dealing with what my hematologist described as "the lower spine of a 75-80 year old woman".
What can cause this in someone of my age? Any research or ideas or experiencers out there with some insight? Bless -

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Also I forgot to mention why don't you talk to your doctor about a pain pump. It looks kind of like a diabetic pump but it puts medication into your system when needed. It helps my friend's dad 100%.

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@iain49

Hi - 49 year old male here in chronic pain for 7 months now, just recently diagnosed with MGUS and Osteoporosis in lower two vertebrae. Six months ago I had a ct-scan that revealed enough of a problem to warrant 2 prescriptions on spot: Dilaudid for the pain and Lyrica for what was diagnosed as symptoms related to nerve damage. I take the Dilaudid as needed, sometimes as much as 8mg a day, and am taking 4x75mg of Lyrica daily. Today, I was given Fosamax and the Calcium/Vitamin D everyone here knows too well. I'm currently on a waiting list for an MRI which I'm told should be further revealing. My hematologist today told me that he'd never seen such an advanced case of osteoporosis in a 49-year old male... someone who, despite being lactose intolerant, still enjoys milk, yogurt and dairy products. Clearly, something is preventing Calcium and Vitamin D from being properly absorbed into my body. (My guess). I'm wondering if there is anyone else out there, in my age range, dealing with what my hematologist described as "the lower spine of a 75-80 year old woman".
What can cause this in someone of my age? Any research or ideas or experiencers out there with some insight? Bless -

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My husband has the same issues and he's only 38 is lower spine. His cartilage in between his vertebrae are disappearing fast so it's almost bone on bone. he got off his my pain medicine because he got sick of it. Lyrica honestly I don't think it's going to help it's a nerve blocker of course but at the same time it can make you feel like you're drunk and you have more of a chance of falling then you would not taking it. Now my husband wanted me to tell you since you do have the lower vertebrae problems is to go to the gym. Nothing heavy just on physical therapy machines. he said making your muscles around your spine stronger helps tremendously. maybe in the next 10-15 years they'll figure out something for yourself and my man. Ty

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