Renal Osteodystrophy and weight loss with loss of muscle mass

[PcTrucker]

Please, is there anyone who have had a kidney transplant but after a long time on dialysis been diagnosed with Osteodystrophy (rugger jersey spine) and now having issues with loosing weight and muscle mass? Only this is happening to me and would like to know what would possibly cause this? I.e the medication we have to take or it’s all to do with the bone disorder? Thank you

[RhenDutchess123]

I believe it's from Parathyroid Disease that goes untreated...My Parathyroids began to go crazy in Stage 3 and I had 3 of the 4 removed....felt so much better...and at Stage 5 I have very little bone pain...but have muscle mass loss...which I dont think is totally contributed to the Parathyroid Disease, but rather to the Kidney Disease itself and the removal if protien from our diets. .I am now on PD Dialysis and encouraged to add lots of protien back to my diet, which I hope will help improve my muscle mass again...Kidney Disease is such a numbers game

[PcTrucker in reply to RhenDutchess123]

Thank you for you reply, I’ve had all 4 of my parathyroids removed but I do have Osteodystrophy which is otherwise known as rugger jersey spine ( bone disease ) but my bone pain has never gone and is getting worse. So maybe it’s the bone disease causing the muscle mass loss? Stay safe and well.

[RhenDutchess123 in reply to PcTrucker]

It could be...at what stage did you have your Parathyroids removed ?..When they removed all 4 did you begin treatment for the loss...we have to have some to regulate our Calcium ..

[PcTrucker in reply to RhenDutchess123]

You will have to forgive me, all I can tell you is that discussions of my parathyroid being removed literally went on for 2 to 3 years with my consultant at my renal unit but for some reason it always got put on hold. So never got done until 2 years ago. So I don’t know what stage I was at but had got to the point that they had to be removed. I’ve been on cinacalcet no longer though but continue to take calcium chewable tablets. They have put me on oxycodone tablets for the pain as well as Co- codamol but have explained to the consultant they don’t do anything for the pain. I’m 47 and reliant on a mobility scooter and walking stick or crutches if and when I go out. May I ask? Do you yourself need such aids to help you get about and is your condition currently under control or will it get worse? I’m sorry to ask but I am scared of how far this will affect me? Thank you

[RhenDutchess123 in reply to PcTrucker]

After my Parathyroid Surgery the pain I was having....mostly leg and lower back pain...mostly subsided..I know I have to keep a close watch on my Calcium...not to low..not too high and I watch my PTH also...as it triggers the release of hormone that decides if I need more or less Calcium. Like I said..Kidney Disease is a numbers game....I am sad you are having such a difficult time...I am not sure if your pain will lessen...it may depend o. How much permanent damage your Parathyroids did before they were removed...My Neph didnt rhink surgery would help much...but I did it anyway...and I am glad I did