What do you do about osteoporosis?

[Deanne]

I'm still pre-ESRD at about 25%. I had a bone density test last Thursday and the technician said I definitely have osteoporosis in my back and osteopenia in my hips. I had the report sent to both my neph and my gyn. It was my gyn who wanted me to be checked because she has me on progesterone. I don't want to discontinue progesterone. I watch the commercials of course and they all seem to say "don't take this if you have severe kidney disease." What do you do about it?

[Psim]

I'm same like you, pre dialysis, 25%, osteoporosis. My neph didn't want me taking the osteo drugs because they might hurt my kidney, so I've been taking Calcium Citrate (1200 mg/day) Magnesium Ctitrate (150/day) and Vitamin D (1000 IU/day). (I take the Citrate form cause I have problems with kidney stones.) I've been doing this for a year, but have no idea how it's working, cause the lab will only do bone scans every two years, unless you're on an osteo drug. Argh!!! I guess they figure that if you're not on an osteo drug it can't be all that bad! So I have to wait another year to see if what I'm doing is having any effect.

In other words, I have no advice for you now, but I'll let you know how it's all worked out next year!! Best of luck, and let me know if you find out anything!

[willieandwinnie]

Deanne, I can only tell you if it were me, I'd want to stay pre-dialysis as long as possible. All the drugs they use for harmone replace are not good for the kidneys. I have to agree with Psim about the Calcium Citrate, Magnesium Ctitrate, and Vitamin D supplements. Let us know how your doing. 

[Deanne]

Thanks. I hope they don't ask me to discontinue progesterone. It keeps me from having periods. Periods make me horribly sick every month. I just can't go there. I can't! I was to the point of being suicidal because the pain was so intense at one point. I wanted to cover my head with a plastic bag to suffocate myself, but I couldn't because I was in so much pain that I was writhing around on the floor and I couldn't stand up to get up to grab a bag from the top shelf they were on.

[paris]

Deanne, I would ask for something to help with the pain and stop the progesterone----just my .  I will do anything to prolonge what function I have.  Bone density is an issue with kidney failure.  I only take meds that my neph prescribes and then research it for myself.  At 25%, you do have severe kidney disease and I know you want to keep it at that level as long as possible.  Talk to your neph.  We don't want you to hurt, but we want those kidneys to keep working.

[Zach]

Resistance exercise can help a great deal.

This is from the National Kidney Foundation:
Exercise, Bone Disease and Chronic Kidney Disease

http://www.imakenews.com/ckdupdate/e_article000556048.cfm?x=b11,0,w


And additional info about Bone Disease

http://www.kidney.org/atoz/atozItem.cfm?id=49

 

[Deanne]

Thanks for the links Zach. Interesting that the first one strongly suggests exercise like walking to increase bone strength. I've walked / completed four marathons, the most recent one was last October. I think it was my last one. I don't feel like I have enough energy to do it again. Sometimes, the 3.5 miles I walk with friends on Saturdays and Sundays is even difficult, but I make myself keep doing it because I know I have to keep pushing myself to stay fit.

I'll make sure I communicate with both my neph and gyn. I always make sure they each know about all meds I'm on and why I'm on them.

[jbeany]

Deanne, what about other options for stopping periods?  I don't think it should be an all or nothing choice there if you are in that kind of pain!  Is there some other option that would work for you that doesn't have the side effects of the progesterone?  How about a Mirena IUD?  A laproscopic partial hysterectomy?  There must be something else you can try out there.

[Sunny]

I am also pre-dialysis with low functionaing kidneys. I take the calcium caltrate and vitamin D mentioned. I was on hormone replacement therapy for about 6 mths after going into early menapause, but after reading up on it I don't believe it's worth the risks so I stopped. Besides, in the 6 mths I took it there wasn't much of a difference that I noticed. Walking is a good resistance excercise for bones if you're not into those heavy work-outs at a gym(way too exhausting for me!).Maybe see if your Doctor can give you pain killers for the painful periods, or maybe see a gynacologist. Anyway, I'm against estrogen and progesteron because who knows where it will lead down the road for you. Some of these medicines are still so new I really don't believe they know what effects they will have in the future, esecially for people with kidney disease. We need to take extra precaution. However, who knows what my response would be if my next bone density scan were bad.

[Psim]

Resistance exercise can help a great deal.

When I first read that, I thought you meant it can help period pain and I wondered, "How does Zach know that?" 
But seriously, great links. Guess I'll keep jogging.

[Deanne]

I thought that about Zach's message at first, too! Zach is just a very modern man. 

Thanks everyone for helping me keep an open mind about trying something other than progesterone. I'll do my homework before my gyn appointment and have a chat with my gyn about other options.

[paris]

Wishing you a good solution. Keep us updated. This is a problem alot of us have.

[KT0930]

I was diagnosed with osteoperosis at age 24 after having been on prednisone for 16 years. I was put on one of the weekly meds for it that was available at the time (sorry, that was 10 years ago, I don't remember what it was). Because it was filtered through the kidneys, my gp had me taking it only once every two weeks instead of once a week - he consulted with my neph, first.

I was talking to my best friend about it a few years later (she's a physician's assistant), and about the resistance training/exercise portion of it all. She pointed out that the walking/jogging is only considered beneficial for osteo if you weigh over 150 pounds. I'm sorry most of my information is old, since I've been through two transplant surgeries in that ten years and am not yet stable with the latest one (though getting closer everyday!).

[Deanne]

That's interesting about the weight thing & walking. I guess if you're under 150 pounds, you aren't really lifting enough weight for walking to be considered resistance training. I understand lower weight people are more prone to osteoporosis and I'm at my highest ever weight right now at 128 pounds. Has your bone density improved? I've been watching your transplant progress and still laughing at the comment that someone made about hoping this one "takes" for you. It sounds like you're doing great!

[Zach]

 Zach is just a very modern man. 

 

[st789]

A partner would be great way for resistance exercise! 

[Deanne]

Oh Zach....! Rumor has it I need a partner to regain bone density. Wanna help?  I'll rope ya in (good arm exercise) and we can play 

[KT0930]

Oh Zach....! Rumor has it I need a partner to regain bone density. Wanna help? I'll rope ya in (good arm exercise) and we can play

I guess tug of war would count as resistance as long as he really tries to resist... 

[Zach]

 

[Deanne]

I've had voice messages from both my neph and gyn. My neph said to start pumping myself full of calcium and she's mailing me a lab sheet to check my vit D absorbtion and PTH levels.

My gyn just said "call me!" so I'm waiting for their office to open. In the meantime, I've been trying to do some homework on progesterone and osteoporisis and it looks like taking progesterone might actually be beneficial! I'm seeing this kind of statement on several sites: "Osteoporosis, however, begins at about age 35 when progesterone levels begin to decline despite continued good estrogen levels. This is an indication that progesterone deficiency is the major cause of the early appearance of the osteoporosis process." However, I also saw on another a link that risk factors include a loss of menstruation for longer than 6 months and marathon runners. I wonder if marathon walking fits into that category, too. I've walked four marathons.

[Sunny]

FYI: regarding osteoarthritis and walking. I spoke with my general practitioner today on whether walking is considered resistance exercises beneficial to bones. I specifically asked about my weight (120 pounds) and she said,"Yes": walking is considered resistance exercising and thus beneficial for my bones even at my weight." I suggest we Don't discount the benefits of walking. Not everybody is able to do those exhausting break-neck work-outs. I find things like aerobics and Jazzercise very hard on my knees and ankles. I avoid gyms because of germs.
Also, swimming is not a resistance exercises beneficial to bones (though very good for the heart), and bike riding is not either unless you are doing mostly uphill stuff. So, even something as simple as walking can be good for the bones.