Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@mariegroh

How tall are you? There is evidence that shorter women will pretty much always show a low Dexa result and that the baseline for shorter women should be adjusted down from the "standard" one-size-fits-all charts.

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can you give a link that shows the evidence that shorter women DEXA should be adjusted? That would be good news! Thank you

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@kevinking

I have been on Forteo since April 2017 and it is helping. But, I itch, a lot. I can't sleep from the itch. I think it is from the Forteo. Have you had that experience? If so, what did you do about it?

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Yes, I do get itching from Forteo. It seems to subside about an hour or so after the injection and I take it at night so sometimes sleep through, though it sometimes wakes me up.

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Has anyone taken medication for osteoporosis after having a kidney transplant? On the fence as to which medication other in my situation would help. Using weights and being very careful as I also have two bulged disc.
Any suggestion or information would be appreciated . Thanks

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The Tymlos pen has 8 "clicks." To do a full dose you go through 8 clicks (if you go slowly). Therefore you can adjust the dose, start low and move up as you tolerate it.

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@windyshores

I started with two clicks and moved up slowly. After a month I made it to 6 clicks, which my endocrinologist was really happy with. I alternated 6 and 7 for awhile and now do 7 clicks every day. I tried for years to get on to Forteo which is full dose only.

Side effects at first may include headache and dizziness, and brief fast heart beat. I had those when I started at 4-6 clicks. But not when I started lower. I still have some weakness but only maybe 2 days out of 6.

I cannot say that there are no side effects. I can say that even on a day when they are very noticeable, they fade in 3 hours or so.

The thing is, I have several fractures. I would stick with this no matter what. It is harder to feel motivated before fracturing. I wish I had found Tymlos earlier! I has assumed the same problems as I had with Forteo and tried to get into a trial for the Tymlos patch, and fractured in the meantime.

My doc said we would lock in gains with Reclast but maybe 1/4 dose and then I can take a break from all meds as long as I am monitored.

ps I had breast cancer and those meds did cause more bone loss

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What's click? BTW (thanks for all your posts on my orig. thread!

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I looked into fecal transplants. Only available for C-Diff. in Iowa City.

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@mariajean03

What are the side effects of a reclast infusion once a year for osteoporosis? I refused it a year ago but have to do something. I take a high dose of Vitamin D and collagen. Are there any new treatments out there? I've fallen a few times but no fractures. Had anorexia for many of my young years. Now 63 with ulcerative colitis. Can't win! HELP. Maria.

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There are studies going on regarding treating ulcerative colitis with fecal transplants. Please look into this.

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@teb

I found out I had osteoporosis at 57. I was shocked as I've been health conscious for 30 years and a dancer so I regularly exercise. My endo advised me to go on bisphosphonates and my naturopath advised me to go on hormone replacement. I absolutely refused both options. I was going to research restoring my bone density naturally, improve my diet even more, increase my exercise and track my nutrition to make sure I was getting the appropriate nutrients in the right amounts. I gave it 100% effort and told my endo to give me 2 years to show my results. Epic fail. I went from -2.8 to -3.2 with all the loss continuing in my spine. I decided to finally go on Forteo as I felt that at least as parathyroid hormone, it was something familiar to the body and that it specifically targeted the vertebrae. It worked and I had no side effects and my density went from 3.2 to 2.9. Interestingly, I had the most gain the first year and towards the end of the second year, unfortunately a slight loss. After Forteo, you must go on something to maintain the gain or you will quickly lose it. That was also a tough decision. I ultimately decided to go on a low dose hormone replacement and that has helped to stabilize. Again, I made that difficult choice as I felt it was the most natural thing to put into my body compared to the alternatives. The studies that demonized hormone replacement are under greater scrutiny and there are many that now believe they provide more benefit than risk (although there is greater risk if you have heart disease or breast cancer or a genetic predisposition). Ultimately, I wish I had done something years earlier. I mistakenly felt I could do it naturally and that was not possible. If I could do it all over again, I would have gone on HRT in my early 50s as my naturopath suggested and that likely would have prevented the osteoporosis altogether. Alternatively, once diagnosed, had I gone on Forteo at that point, I technically would have been out of osteoporosis. Can't do it over but my mistakes inform my decisions moving forward.

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Fast forward to 68 and that's me. I did the same path as you, except HRT. Mother had breast cancer and I was afraid of putting estrogen in my body. No guarantee it would have worked, so I'm not kicking myself over that. At this point I'm lucky to get half the 12,000 steps per day as recommended by @bonnie95mc because I don't have enough energy to do that plus everything else I do. Not sure if Prolia is affecting the amount of energy I have, but I have noticed changes in my body with which I am not happy. I do keep moving. I'm using a vibration plate at maximum intensity at least once a day, sometimes twice. I'm not feeling defeated, but a little encouragement from my body would help!

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@bettersleep68

I did take HRT in my 40 and middle 50...I still got osteoporosis...so there you go....what really stops it ....I wish there was an answer ....

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I believe there are several causes of osteoporosis l. Functional medical doctors look at fixing the cause.

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@bettersleep68

I did take HRT in my 40 and middle 50...I still got osteoporosis...so there you go....what really stops it ....I wish there was an answer ....

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so sorry. It's rough when you're doing everything you can and everything "right" and it still goes from bad to worse. All we can hope for is that they find answers and better solutions in the future.

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