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Post menopausal Osteoporosis, anyone addressed here?

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Ulcerative Colitis
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deltaforce
Veteran Member
Joined : Jun 2010
Posts : 2373
Posted 2/22/2020 4:12 AM (GMT -6)
My mom has Pancolitis but it is in remission for the last decade without any medications. She is post-menopausal and has severe Osteoporosis.

The physicians she is working with are interested in biphosphonates but she claims that they don't suit her. It results in a lot of pain (she can't pinpoint the pain but overall looks muscular). Since she can not take any NSAID, it becomes a catch 22 situation.
New medications for osteoporosis are not available yet where she lives.

If anybody has been in a similar situation, how did you address it? All options are welcome, mainstream, holistic, functional etc, no judgments. Personal experiences are preferred.

Thanks in advance.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 998
Posted 2/22/2020 5:05 AM (GMT -6)
Hi I'm using prolia (aka denosumab), i'm pre-menopausal so can't really compare my situation. I do know it has been around since 2010 so it is not that new... The main risk is that a small percentage of patients get rebound fractures upon discontinuation - the risk is highest in patients who previously experienced a fracture prior to starting denosumab. On the other hand it has none of the side effects of bisphosphonates. It's a subcutaneous injection every 6 months.
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Sara14
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Joined : Mar 2007
Posts : 6235
Posted 2/22/2020 8:01 AM (GMT -6)
What results in pain....the bisphosphonates or the osteoporosis itself? I've read horrible, horrible things about bisphosphonates, including severe bone pain, and will not take them myself. My osteoporosis is mild though. Osteoporosis itself does not cause pain unless your mother has a fracture. It's a "silent disease." That's why people don't know they have it until they break a bone usually. There's not actually proof that NSAIDs cause flare-ups. I take them about once a week (Aleve), I've never flared from any. I've posted a study here before that says this but everyone here still says NSAIDs cause flares...
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straydog
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Joined : Feb 2003
Posts : 18365
Posted 2/22/2020 9:24 AM (GMT -6)
DF, do you know where the osteoporosis is located with your mother? Typically it hits the spine, hips & wrists. Any idea what her T score is? Severe osteoporosis in these 3 areas can cause pain for several reasons. When the bones become brittle or soft, regrowth cannot keep up bone loss, this is where medications play a role, slowing down the progression. Someone with mild activity will not have pain.

I was dx'd in my early 50's with severe activity, I also had loss of height. I did 2 years of Forteo injections to attempt to slow down the progression. Back then it was the only one that had potential of increasing new bone growth.

Vitamin D & calcium plus exercise is what all drs recommend. Keep in mind, depending on the severity, exercise may not be applicable to her because of the risk of fracture. A simple sneeze or bending the wrong way can cause a fracture.

If your mother is not open to medication, sadly her options are going to be limited.
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FlowersGal
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Joined : Feb 2017
Posts : 948
Posted 2/22/2020 2:56 PM (GMT -6)
How old is your mom? I have a friend with osteoporosis (not sure how severe or what level). I know she was on medication for it but had to stop for reason. Sorry I don’t know more details. All I do know for sure is that she’s now on hormone replacement therapy(estrogen patch) for her osteoporosis. Apparently it’s a legitimate method to build bone.
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deltaforce
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Joined : Jun 2010
Posts : 2373
Posted 2/23/2020 5:59 AM (GMT -6)
Thank you, ladies.

My mom is just 63 and this is going on for a few years now. She hit menopause in her 40s (almost all ladies in her family hit around the same time) and after that, she started getting obese. I don't know the exact details of DXA scan as she is not that tech-savvy to send the reports. I will call her today and get the details but the physician has asked her not to pick up even a pound of weight. Over a period of time, she has gathered a lot more conditions, hypertension, type II diabetes and taking meds for it now.

Currently, the situation is, she can not walk more than 10 minutes without getting exhausted. The doctors have recommended her to only walk slowly and no other exercise. The pain seems to be muscular but it is definitely biphosphonates related. As soon as she stopped those, the pain went away.

She definitely can not take standard NSAIDs. She has tried and every time, it resulted in blood. I sent her Nabumetone from here as I take those. While they are not as good as Alleve or Advil, something is better than nothing. They do not bother her.
NSAIDs and flare connection is tricky. Sometimes Nabumetone (Relafen) does not work with me, then I take 200mg Advil. Once or twice a week, I can get by but if I end up taking more, it results in the flare. I researched what causes NSAID flare and from the mechanism of action, I thought Phophotidylcholine may work. So I started taking along with Advil every time. While I do not have enough data to state that it helps me, so far so good. So if there is anyone that absolutely needs to take Advil, it is worth a shot.

@FlowersGal,
Estrogen patch? That is interesting. I didn't know. Do you know (or can you ask, if possible) the dosage so I can ask my mom to ask about it to her doc.

My mom is not against the meds. Actually, she has no opinion one way or the other. She only wants the 'fix'. The holistic/functional is my idea because I have reached the conclusion, there is no one method of addressing any ailment, you can definitely use supplementary methodology if its trustworthy/proved enough.

Thanks a lot again.
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Michelejc
Forum Moderator
Joined : Jan 2011
Posts : 2594
Posted 2/23/2020 9:43 AM (GMT -6)

poopydoop said...
Hi I'm using prolia (aka denosumab), i'm pre-menopausal so can't really compare my situation. I do know it has been around since 2010 so it is not that new... The main risk is that a small percentage of patients get rebound fractures upon discontinuation - the risk is highest in patients who previously experienced a fracture prior to starting denosumab. On the other hand it has none of the side effects of bisphosphonates. It's a subcutaneous injection every 6 months.

I'm taking Prolia too. For me, there's been significant positive changes.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 2/23/2020 11:44 AM (GMT -6)
That's really tough. I hope she can find something that will help without the awful side effects.
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