Prolia

[lowraind]

I have been advised to start with Prolia injections. I have osteoarthritist, rheumatoid arthritis, chronic kidney disease and lupus. Is there anyone who can tell me what to expect?

[Vprp]

Prolia is prescribed for osteoporosis, not arthritis. Once you start the Prolia, the course has to be continued for 3-5 years without interruptions of the dosing. Following the end of the course, it has to be followed with another drug in the class of bisphosphonates, to prevent rebound fractures. Please consult in detail with your rheumatologist and get a second opinion.

[KidneyCoach NKF Ambassador in reply to Vprp]

Even the literature on this states it should never be taken for more than 2 consecutive years. Most docs who prescribe prolia or similar meds know absolutely nothing regarding the risks with those with CKD or dialysis. Exercise all due caution

[KidneyCoach NKF Ambassador]

My former nephrologist also a professor at Vanderbilt University says there are virtually zero studies with biophosphonates and other meds like prolia with CKD or ESRD/dialysis. What few studies done show that even one injection of the biophosphonates can still show in your body many decades later which is not necessarily good. Just my experiences. Best of luck. Please exercise all due diligence and caution.

[MotherofSchnauzers]

Not to be an alarmist, but be certain to read up about the side effects of Prolia as well. My doctor recommended it (before I was found in stage 3a), but I declined. The side effects can be found on the drug's website, prolia.com., and it also says to be sure to advise your doctor if you have any kidney problems or on dialysis. Side effects which are on the website include bone necrosis and increased risk for broken bones, which seems ironic. You have to decide if it works for you, but be informed, be your own advocate. Wishing you luck and good outcomes!

[lowraind in reply to MotherofSchnauzers]

It was my own research that prompted me to ask the Health Unlocked community members for their advice. Thank you.

[Sophiebun11]

Hi,

I have Stage 4 CKD and Scleroderma, along with Osteoporosis from Prednisone on my DEXA scan. It was -4. I have swallowing problems from my autoimmune disease and can't take Fosamax so my PCP recommended I start on Prolia injections. I am very low in Vit D and a little low in Calcium so he told me to really bulk up on those for the next 2 months before beginning injections of Prolia since the Prolia will leach Calcium and Vit D from your bones.

Make sure to get those levels checked. My Neph approved the injection. He said it's better than breaking all my bones since I am prone to klutziness and falling.

Best of luck. My injection will be next month.

[lowraind in reply to Sophiebun11]

Thank you for your reply. This all started in January, when I had a blood test before my Nephrologist appointment, and my calcium was high (11.6 with a range of 8.4-10.2). She had me do another blood test and this time my calcium was 9.8 and she felt my Vitamin D was high, though it was 79.9 with a range of 30.0-100.0. This test also showed a high Parathyroid Hormone (130.2 with a range of 8.0-77.0). She told me to stop taking Calcium and Vitamin D and to see her in six months. When I questioned the parathyroid hormone she casually indicated this was tied in to the ckd.

I was not happy with being left up in the air for six months (I also have lupus, so I do not get out much, so I don't have a lot of exposure to the sun for Vit. D). I told my personal physician that I was not happy with leaving things for six months with no follow-up and as a result, she scheduled me to see an endocrinologist, who had a bone density test done. This test showed osteopenia, but he also had me get a back x-ray to see if I had any damage to my spinal bones. As a result of that x-ray, he determined osteoporosis and prescribed the Prolia.

As I have researched Prolia, the risks seem to override the value. Also, I have one doc telling me not to take Calcium and Vitamin D and other indications that I should increase both before taking Prolia. I have scheduled the infusion, but I may hold off until I discuss this with all doctors concerned: dentist, rheumatologist, personal physician and pain management. The endocrinologist did talk with my nephrologist and got her o.k., but I do not have a lot of confidence in her. I am not prone to klutziness and falling, but I do try to be very careful.

Thanks again for sharing your experience.

[Jazzlover22]

I was very interested in this discussion. I have osteoporosis but don't take prolia. However, I did, last year, start what's supposed to be a yearly Reclast infusion. I will certainly research whether Reclast carries the same risk for the ckd patient (since I'm one) as prolia. But I'd also welcome any information any of you might have about this. Thanks.

[allene7]

So, I've learned new information on here that is a bit frightening to say the least. I do take and have had 2 Prolia shots. I have ckd stage 4, liver disease, Ra, osteoporosis and osteoarthritis. The Nephrologist, GP, and all involved are aware. I have had zero side effects but that's me. I did read up on the possible side effects and thought all was well since I had none. Reading hear is a bit alarming because I had no idea you should only take this for 2 years and there are couple other things that are possible side effects that I for some reason didn't know. I will however be asking to find out. I wish you the very best. I may not be taking this much longer. I was however told that I needed to take this because my last bone density showed more bone loss than what was normal.