Osteoporosis - Is anyone taking meds?

Leila

Leila

Senior Member (Voting Rights)
Hi!

I was diagnosed with osteoporosis via DXA Scan in 2019 at age 32.

I've been having ME since age 22 and developed endometriosis, been on Dienogest that lowers estrogen significantly for 9 years.

So I assume estrogen reduction and inactivity are the cause, no others were found.

My bone density is getting worse and I'm worried. Doctors don't want me on bone meds at my age and recommend weight training. Which obviously I can't.

Vitamin D gives me terrible Endo pain flare ups, I don't know why. So I can barely take that either.

Has anyone here ever taken bone meds premenopausal?
 
MeSci said:
I'm sorry you've got endometriosis and osteoporosis.

Re bones, do you take supplementary calcium? I do. Previously I was on an ACE inhibitor which led to a fracture - it reduces calcium levels.
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I used to take PPI for 3 years prior and I only learned after it can also contribute to bone loss.

I do take Ca supplements but Vitamin D makes my endo symptoms worse. I've tried different brands, dosages etc. but always flare up couple of hours after taking it. It's very odd.
 
Leila said:
I do take Ca supplements but Vitamin D makes my endo symptoms worse. I've tried different brands, dosages etc. but always flare up couple of hours after taking it. It's very odd.
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I've been taking vitamin K2 (MK-7) with vitamin D for the last 6 years. There are conflicting studies that show vitamin K2 helps with bone health but I can't say for certain whether it helps or not. I just continue taking it.
 
MeSci said:
Vitamin D is a weird one - I don't think we understand it very well. Are you able to get a bit of sunshine during the summer?
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Not at all, unfortunately. Sun and heat are making things a lot worse.

I thought for years I was crazy but did the test again yesterday, my Endo pain was really good, below baseline. Took Vitamin D and pain started at night. I assume it causes some sort of an immune/inflammation reaction.
 
Jaybee00 said:
@Leila

Try doing a search on Phoenix Rising—there are several people there on Osteo meds.

The reason I know this is that in one of the OMF talks at Stanford there was discussion about one or two of these meds (maybe Zoledronic acid) helping with MECFS symptoms.
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Good idea, thanks!

Bisphosphonates comes with a lot of side effects, I was looking into osteo anabolic meds like Forteo and Tymlos. But they're really expensive and only given to people who had multiple fractures and unsuccessfully tried the other meds.

I feel like I'm sitting in a speeding car that drives against a wall and I can't get out. My illnesses are hindering each other's therapy. But I think that's true for many of us.
 
Leila said:
Not at all, unfortunately. Sun and heat are making things a lot worse.

I thought for years I was crazy but did the test again yesterday, my Endo pain was really good, below baseline. Took Vitamin D and pain started at night. I assume it causes some sort of an immune/inflammation reaction.
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Interesting to hear about your reaction to vitamin D. I have a similar problem. Everyone is always saying it is good for bone health etc.,but if I take it, my cognitive function declines dramatically within a few hours. I have tried many brands. I am the same as you when it comes to heat and sunlight. Sometimes I wonder if I might be part vampire. Certainly the idea of sleeping in a nice dark coffin in the summer is very appealing.

I am aware that my lifestyle (horizontal) and my age (post menopausal) puts me at higher risk of osteoporosis, but there is really nothing I can do about it.

My mother in law is 81. She has osteoporosis and has had a number of fractures, but has only had a fracture whenever she has had a fall, or gone to a chiropractor. She was a very fit and active person, who sunbathed and took the osteoporosis drugs for years, but they obviously didn't do much.

In contrast my aunt was very sedentary with fibromyalgia, was sun phobic like me, and had a hysterectomy at 30 with no HRT. She lived to 80, and had a diagnosis of osteoporosis but didn't take any drugs, and never had any fractures. So maybe you will be OK like her.

Personally I have decided the best thing to do is invest in good solid footwear to avoid falls, and avoid the chiropractor.
 
Somewhat related question but if I’m very severe since 19 so basically not moving at all and on high dose PPI for life, I assume I’m quite at risk of developing ostheoperosis? If so, should I be taking a calcium supplement?
 
I would say anyone being severely ill is at risk for developing osteoporosis.

Regarding PPI, there seem to be different opinions on it, so I'm not sure. Also if Calcium alone is enough or of it needs to be combined with Vitamin D.
 
There is also another issue that I've encountered years ago. My magnesium levels were below normal, mg is needed to move vitamin D around in the blood to activate vitamin D (1.,2, dihydroxyvitamin). Most GP won't test for this particular vitamin D unless you have hypercalcemia. Mine did and it was always low despite taking vitamin D gels. Once I corrected my magnesium levels my vit D levels started going up.
 
Regarding vitamin D I have read a theory about why it causes some people pain, but I can't remember where I read it. The theory suggested that vitamin D helps to re-mineralise the bones and this causes pain for some people (presumably those whose bones/bodies have been low in vitamin D for a long time - but I'm just guessing).

I've read a personal anecdote on a thyroid forum where the person who was in pain with vitamin D kept taking it despite the pain. After about 4 months the pain went away and hasn't come back.

I'm lucky. Taking vitamin D has never given me any problems.

I have also read that magnesium and vitamin K2 are essential for people with bone problems and low vitamin D. Another mineral required for bone health is boron. I think I may have got some of this info from one of these websites - but I'm not positive :

Save Our Bones - Home Page

Better Bones - Home Page
 
I must admit I've always preferred the Save Our Bones site to the Better Bones site. I'll stop linking to the Better Bones site in future. It's a long time since I have looked into it.
 
This new study just showed up on my X feed.

Therapeutic avenues in bone repair: Harnessing an anabolic osteopeptide, PEPITEM, to boost bone growth and prevent bone loss

Highlights
  • PEPITEM exerts anabolic osteogenic activity to regulate osteoblast-osteoclast coupling
  • PEPITEM acts directly on osteoblasts to promote formation of new and stronger bone
  • PEPITEM stimulates an inhibitory paracrine loop via OPG to limit bone resorption
  • PEPITEM therapy halts disease-induced bone loss in vivo
Summary
The existing suite of therapies for bone diseases largely act to prevent further bone loss but fail to stimulate healthy bone formation and repair. We describe an endogenous osteopeptide (PEPITEM) with anabolic osteogenic activity, regulating bone remodeling in health and disease. PEPITEM acts directly on osteoblasts through NCAM-1 signaling to promote their maturation and formation of new bone, leading to enhanced trabecular bone growth and strength. Simultaneously, PEPITEM stimulates an inhibitory paracrine loop: promoting osteoblast release of the decoy receptor osteoprotegerin, which sequesters RANKL, thereby limiting osteoclast activity and bone resorption.

In disease models, PEPITEM therapy halts osteoporosis-induced bone loss and arthritis-induced bone damage in mice and stimulates new bone formation in osteoblasts derived from patient samples. Thus, PEPITEM offers an alternative therapeutic option in the management of diseases with excessive bone loss, promoting an endogenous anabolic pathway to induce bone remodeling and redress the imbalance in bone turnover.
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LINK

Bone-Enhancing Peptide Shows Promise as Therapeutic for Osteoporosis and MSK Disorders

LINK
 
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