STOP! Don't do this if you have osteoporosis

I have osteoporosis and chronic kidney disease (CKD) stage 4. I get a bone density test every 2 years. I think it is a Dexa scan. I will ask about the benefits of a REMS scan. I am on Prolia, an injectable medication every 6 months. Before I started it I asked if it would cause problems for my kidneys. My nephrologist approved it. I have these appointments coming up this week and will ask about the scans and the med. If there’s any new information I’ll report back.

@cmdw2600

Thanks! I'll check to be sure it's included in my husband's multi.

Thank you for starting this discussion -
My osteoporosis began as a result of taking steroids for only 4 months - my recommendation is to have a bone density test done prior to and within a few months of taking steroids…it would have alerted us to the fact that the strength of my bones was being compromised - I ended up having 12 compression fractures within 9 months.

I just went on a short trip. I only took a carry on. I am ok, but I am sure I should not have lifted it up and down to and from the overhead compartment, since you pretty much have to bend and twist due to limited room!

I just purchased a grabber to get clothes from far back in my (new, but purchased before I was diagnosed) front load laundry machines.

I second the boating, jet ski, bicycle, scooter hesitancy…..

While on my vaca, we started up a hiking trail that became very rocky and steep. A no go/fall risk. Had to go back down and find a more sedate trail elsewhere.

I have a very boisterous, 85 pound lab that I don’t try to walk anymore (think “squirrel!” —with him giving chase and yanking hard on one arm). We throw the ball in our fenced back yard A LOT though! But I no longer play tug of war with the poor guy.

I don’t go up onto the roof to blow out the gutters. I don’t go up tall ladders to pull the Spanish moss from my trees.

But I do walk a lot! And since I am out so much I have time to enjoy sunrises and bird song and meeting other walkers!

I do not go to Costco and buy the giant crates of bottled water. I don’t babysit the baby next door (she is now over my 20lb limit). I just generally try to use good sense, but it’s definitely hard to remember caution!

@babbsjoy

Did you lift your luggage into the overhead bin? Because I agree that would be a no go. In that situation you could have them take the luggage to the bottom compartment of the plane. They usually have someone standing by the door of the plane before you enter. Or you can ask the flight attendants. They are very helpful.

It sounds like those reacher grabbers are a great investment. We just bought two good ones that include a magnetic tip.

Outdoor activities are still possible just with caution. I’m always looking out for my husband when he’s about to do something wrong out of habit. Sometimes I feel like a nag but he’s good about it. I understand it’s easy to forget and do things you’re used to doing naturally. We’re still very new to this so info people share here is really helpful.

WOW!! Your pup is big and I can see why walking him would be out. It’s good you’re able to throw a ball. I have a shoulder/neck issue so I have to be super careful.

Oh my Lord!! No ladders is right! A fall could be disastrous. We hire a service to come inspect and take care of our roof twice a year, have hired gardeners every other week in the summer and a cleaning crew every other week. It’s just gotten to be too much. I operate a home daycare and my husband is my assistant. He can no longer lift any of the children. But he can still sing songs with them, do stories and help keep an eye on them while they’re playing. We just make adjustments and make it work.

We walk a lot and go on day and overnight trips in nature. Like you we just use caution and adjust.

My husband can’t carry cat litter, dry cat food bags, grocery bags weighing more than 5 pounds (for now) so I do most everything until his fractures are more stable.

@vmcd

Wow!! 12 fractures in 9 months is a lot. I’ve been fretting over my husband having three over the past few months. Do you know what caused you to have so many? Did your doctor explain the changes you’d need to make to help prevent from getting them? My husband got his last one bending down to empty the dishwasher. Now the doctor says he can’t do any bending and can’t lift anything over 5 pounds. Until she knows these fractures are stable.

I agree that they should start bone density testing right away for people on steroids for over three months. I’ve read anything over 2.5 mg per day for three months can cause bone loss. My husband has been on over a year of high dose prednisone, up to 80 mg per day. We’re tapering with the help of Actemra for a condition called giant cell arteritis. He’s now down to 17.5. The side effects have been awful but the drug likely saved his life.

kstar077,
The REMS Echolight is an Ultrasound device - there is no radiation involved. It is used regularly in Europe, and was developed in Italy. There is a Doctor in Scottsdale AZ that offers REMS Echolight bone scans. The scans are not covered by medical insurance but they are not unreasonably priced. I am watching for one to become available a little closer to my home.

Why do they say do not get REMS echolight if you have osteoporosis? What if you have osteopenia?

I have severe osteoporosis and was told no flexion of the spine (except a mild cat/cow in yoga is ok) and no weighted twisting.
Also, I learned the hard way that if you take a break from your bone strengthening exercises, please start over at the lowest weights when you resume! This is critical.

@isabelle7
You have a lot with watching out for your husband and doing extra! All this is hard, and he is blessed to have you supporting and helping him!

Another thing I just thought of, is pulling through (safely/cautiously) parking spaces when possible. Even with backup cameras, it’s safer to look around for pedestrians, etc and that twisting is a no no….So I try to park so that I can just pull forward….