Prednisone and osteoporosis

[Kbristow]

Any transplant patient who has osteoporosis concerned about taking prednisone? Has your doctor taken you off of that? Or still keeping you on prednisone but at lower doses? I'm five years post transplant and my doctor now has me at the lowest dosage possible but I still worry. I take 2.5 mg every other day.

[Hidden]

I have osteoarthritis and am going for the osteoporosis test shortly. I currently have a broken ankle that just broke without injury and isn't healing. I am on 5mg., of prednisone a day. I already refused to take prednisone for pain control. The damage is done and cutting back probably won't matter in my case because I have been on it for so long. I thought mycophenolate was a prednisone sparing drug and I could reduce the prednisone. I am pretty annoyed by the whole prednisone situation.

[nosillap in reply to Hidden]

Join the club!!! My knee had osteoarthritis so bad & they wouldn't change anything. Could barely walk for about 8-9 months!! After 6 years I totally have a prednisone face & body.

[Hidden in reply to nosillap]

So get it. I am sorry about your pain. Ask your Primary for a prescription for Tramadol. It doesn't get rid of pain, but takes the edge off.

[nosillap in reply to Hidden]

That was a year ago. For some weird reason it went away.

[Hidden in reply to nosillap]

Probably from all the prednisone. It does kill pain, but not worth it in the long run. How much are you on now?

[nosillap in reply to Hidden]

Just 5mg a day now. For 5 years.

[blackkat2]

At my own request, I was taken off prednisone within a year of my transplant three years ago, with no problems. But I've just been diagnosed with osteoporosis--one of the things I'd hoped to avoid by getting off it.

[Hidden in reply to blackkat2]

Good for you. It can be just a course of prednisone to start the decay process in some people. I did some research on prednisone and believe it is the most dangerous drug I have to take.

[nosillap in reply to blackkat2]

I asked to be taken off it & they told me NO!!

[Hidden in reply to nosillap]

You have to be careful if you are going to cut down prednisone yourself. Nephrologists all say no to medication reduction. I had my transplant in 1982. Things were great for the first 15 years. Lots of energy, no pain. Worked two full time jobs. When managed care started things went downhill. The last 5 years have been rough. I recently cut my prednisone down to 5 from 10 a day and labs got better for some reason. I did tell my nephrologist what I am doing and they don't question it, but list me as non-compliant. I tweaked mycophenolate to 500 a day vs. 1000 a day. GFR went up and creatinine went down. My nephrologist can't explain it and won't discuss it. I think nephrologists over medicate because they don't trust people to take their medications. I do feel better, but the drugs have taken their toll and that is the way it is. If you do go down that road, I recommend you tell your nephrologist what you are planning and why.

[nosillap in reply to Hidden]

Well I have left all alone as all is going well!!

[WYOAnne NKF Ambassador]

When I was 5 years out I was taking 2.5 mg of prednisone and was showing signs of osteopenia. As my bone density was showing more changes the next year, my transplant center took me off of it. By stopping the prednisone my bone density did improve some and my creatinine value never changed by stopping it.Good luck to you! I am 21+ years post transplant and am doing great.

[Hidden in reply to WYOAnne]

👍

[Hidden in reply to WYOAnne]

You do really well. I am proud of you for your positive attitude.

[May4]

I was on 5mg of prednisone for 20+ years. After my second transplant was stable for a few years I asked about being taken off prednisone, I was able to taper off very slowly with a lot of lab work over the next 6 months but it went fine and I no longer take prednisone.

During my time on prednisone I did get several bone density scans which were in the normal range, my bone density actually improved slightly while on prednisone I'm assuming because I started doing consistent weight bearing exercises at least that's what the doctors thought contributed to it. Squats, lunges, arms, all with weights and a bit of jogging. I know the issues caused by the prednisone can make it really hard to exercise though sometimes, grrr!

[Hidden]

Yes. I forgot to mention weight bearing exercises. So beneficial.

[Hidden]

As always, it's amazing to see how everyone is so different. I have slight osteopenia after taking prednisone for 50 years. My DEXA scans look great and have actually gotten better since I've been walking more with COVID. My understanding is because of how prednisone affects the architecture of the bone, it may be helpful to get a Trebicular bone score esp if you're a long-term transplant patient--but not all medical centers have it. Even though my bone scans look OK, it may be necessary to get Reclast or another IV yearly due to the prednisone.

[Tran50years in reply to Hidden]

Also have taken prednisone for 50 years, have osteopenia and have improvised after COIVD walking. And I've taken Reclast. Good advice for others on the Trebicular bone score.

[Tran50years in reply to Hidden]

oops improved not improvised. 😀

[mingmiley]

I had a transplant for 16 years, It was the beginning half year of my transplant and the two episodes of my rejections that I needed to take high, high dosages of prenisone, like 800mg ( and that's what damaged the bone), then I was taking 5mg for maintaining dosage for 16 years..Yes, I have serious osteoporosis . 13 years ago i lost this kidney, and i have a curved back. The doctors gave up on my back, but my kind Nephrologist Dr Bruce Oneill is treating my bone with Prolia.

[Kennythekidney]

I am 3 yrs post transplant and have been on 5 mg prednisone. I just did a bone density scan and was told my bones are thin and I have osteoporosis. 😔 They recommended Prolia and I am wondering if I should ask for a prednisone alternative. or reduction? Just got the call and I am feeling a little overwhelmed.

[Eyak1971]

On prednisone for 2 years. Ended up with a v n . Now waiting for 2 hip replacements. Doctor said all rejection medications have side effects. Slowly taking me off of prednisone for the next 3 months. But in my mind the damage has been done. Wish I had been more aware before transplant. Transplant gave me more years to live but at what cost? But you have to live with your choices. Perhaps if I make it through hip surgery I will be more positive about the choice that was made because others would probably be thankful just to have the choice. Note - after diagnosis joined bonesmart.org. great feedback from those who have experienced all types of bone ailments. Would highly recommend.