1. < Osteoporosis & Bone Health

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.

dk68 | @dk68 | Mar 14, 2023
In reply to @windyshores "I started with two clicks and moved up slowly. After a month I made it to..." + (show)
@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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windyshores | @windyshores | Mar 14, 2023

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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yani2023 | @yani2023 | Mar 15, 2023

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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mspatart | @mspatart | Apr 7, 2023
In reply to @kevinking "I have been on Forteo since April 2017 and it is helping. But, I itch, a..." + (show)
@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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vgkime | @vgkime | Apr 7, 2023
In reply to @mariegroh "How tall are you? There is evidence that shorter women will pretty much always show a..." + (show)
@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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patclem | @patclem | Jul 6, 2023

After getting a Dexascan they found osteoporosis and was told I was at rIsk of hip fractures. I am 82 so I said I would do the Reclast. I am to start Reclast July 14. The PA that ordered the infusion only told me about side effect with my jaw that you can get problems with it. That was all she said. After researching Reclast on the Mayo Clinic site there are so many side effects. I am 82 and am more interested on living my few years without so many side effects and want quality of life first. Has anyone hafnReclast for a while and any complications from it ? Thank you.

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3 replies
windyshores | @windyshores | Jul 7, 2023
In reply to @patclem "After getting a Dexascan they found osteoporosis and was told I was at rIsk of hip..." + (show)
@patclem

After getting a Dexascan they found osteoporosis and was told I was at rIsk of hip fractures. I am 82 so I said I would do the Reclast. I am to start Reclast July 14. The PA that ordered the infusion only told me about side effect with my jaw that you can get problems with it. That was all she said. After researching Reclast on the Mayo Clinic site there are so many side effects. I am 82 and am more interested on living my few years without so many side effects and want quality of life first. Has anyone hafnReclast for a while and any complications from it ? Thank you.

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@patclem my docs are doing a test dose of Reclast, 1 mg vs the full 5mg. After that I will do a half dose of 2.5 mg. Hydration and a slow infusion help.

The bigger question is, if you have severe osteoporosis, can you do Forteo, Tymlos or Evenity first?

Those lists of side effects are scary for us but I try to remember that companies are legally required to report each and every side effect. The jaw issue tends to happen over time and happens more with cancer patients on higher doses. My docs say it is rare. But it is true that some have fluish reactions short term, and some have pain or malaise etc. with the Reclast.

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1 reply
pami | @pami | Jul 7, 2023
In reply to @windyshores "@patclem my docs are doing a test dose of Reclast, 1 mg vs the full 5mg...." + (show)
@windyshores

@patclem my docs are doing a test dose of Reclast, 1 mg vs the full 5mg. After that I will do a half dose of 2.5 mg. Hydration and a slow infusion help.

The bigger question is, if you have severe osteoporosis, can you do Forteo, Tymlos or Evenity first?

Those lists of side effects are scary for us but I try to remember that companies are legally required to report each and every side effect. The jaw issue tends to happen over time and happens more with cancer patients on higher doses. My docs say it is rare. But it is true that some have fluish reactions short term, and some have pain or malaise etc. with the Reclast.

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How many months have you been doing the 1 mg of Reclast? I wondered how that is working for you?

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2 replies
pami | @pami | Jul 7, 2023
In reply to @patclem "After getting a Dexascan they found osteoporosis and was told I was at rIsk of hip..." + (show)
@patclem

After getting a Dexascan they found osteoporosis and was told I was at rIsk of hip fractures. I am 82 so I said I would do the Reclast. I am to start Reclast July 14. The PA that ordered the infusion only told me about side effect with my jaw that you can get problems with it. That was all she said. After researching Reclast on the Mayo Clinic site there are so many side effects. I am 82 and am more interested on living my few years without so many side effects and want quality of life first. Has anyone hafnReclast for a while and any complications from it ? Thank you.

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I had 3 years of Reclast in my middle 50s. Later. I had 2 years of Reclast in my middle 60s. I never had a problem with Reclast. The last year I was on it I didn't make any progress so I am now trying Prolia which is working for me.

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windyshores | @windyshores | Jul 7, 2023
In reply to @pami "How many months have you been doing the 1 mg of Reclast? I wondered how that..." + (show)
@pami

How many months have you been doing the 1 mg of Reclast? I wondered how that is working for you?

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@pami I have not done the Reclast yet and the 1mg is a "test dose." Doctors are nervous about me tolerating it.

If I tolerate it I will probably go to 2.5 mg, a half dose.

The problem with Prolia is that you can really only do a bisphosphonate after it (so far). That transition is tricky. When you stop Prolia your bone density falls and fracture risk rises. Hope you can share your plan!

Prolia is better for kidneys and I have kidney disease. But none of my endos use Prolia.

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