I’ve been on dialysis for about 10 years now (6 years of PD and a failed transplant in between). I’ve been on nocturnal daily home hemo from the past one and half years.
From the last month or so, I’ve been having pain in my right knee. Also, when I climb down stairs, my knees feel wobbly and do not have enough strength. I need to hold the rails to be stable.
I’ve seen an orthopaedic doctor. He asked me to take an X Ray and said there are minor changes to the bone there due to the long term effects of kidney disease. He’s asked me to take Alpha D3 capsules that will help absorption of Calcium from the gut.
Does anyone know about this? What can be done to prevent further damage?
I’m sorry to hear that you’ve been having knee problems. There’s a complex relationship between kidney failure and bone problems. Kidneys activate vitamin D, which then acts on the gut to let you absorb calcium from food. There are a few forms of activated vitamin D–in the U.S. Rocaltrol, Hectorol, or Zemplar are usually prescribed to replace the activated vitamin D that the kidneys don’t make any more. I’m not sure what type of vitamin D you were prescribed, but that would be the reason for it.
Do you know if your parathyroid hormone (PTH) levels are high? I assume that with nocturnal dialysis for so long your phosphorus levels are probably good; what about calcium? Without enough vitamin D to let you absorb calcium, your parathyroid glands (in your neck) can enlarge and put out too much PTH, which can harm your bones over the long term. Preventing bone damage is best done by keeping calcium, phosphorus, vitamin D, and PTH in balance.
Have you talked with your nephrologist as well as an orthopedic doc? “Minor changes” to the bone might not be the cause of the weakness you’re feeling. If not, it would be important to find out what that might be so that can be addressed, too. You might need physical therapy to strengthen the muscle, for example.
Another fairly new drug to ask your nephrodoc about is Sensipar. I’ve been on it since the Phase 3 study and it does several things including reducing the PTH, helping with the absorption of calcium and, perhaps strangely, keeping my phosphorus down. Ever since I started a couple of years ago I haven’t had to take any binders. I now am only taking it three times oer week, but also take Zemplar daily.
My PTH and Calcium have always been normal and are normal currently as well.
My phosphorus is below normal even before my treatment. After treatment, it goes further down. I’ve started taking Neutraphos twice daily. I will be doing my tests soon to check how the response has been.
Could the low Phosphorus have anything to do with this?
I did consult with my nephrologist who put me onto an ortho.
My ortho suggested Alphacalcidol which is a Vitamin D3 supplement. He asked me to take it for a month and then he would review progress.
It’s great that your PTH and calcium are (and have always been) normal–the normal-er the better for preventing long-term problems like bone disease. It seems unlikely that your phosphorus levels could cause any major bone problems if your other levels are in balance. So, you wouldn’t need Sensipar, for example, though it’s a terrific drug for folks whose PTH levels are too high.
How low has your phosphorus been? Phosphorus is key to energy use at the cellular level in the body, so it’s possible that if your levels have been very low, you might notice symptoms, but it still seems unlikely that they’d be limited to one knee. It’s certainly worth getting your phosphorus levels back to normal, and if they are and the problem goes away, then you know what happened.
If not, I would ask your nephrologist for a referral to a neurologist and possibly to a physical therapist. If just one knee is weak and “wobbly” you might have a nerve or muscle problem there. It’s important to get this figured out to reduce your risk of falls. (Not to mention that it must be pretty anxiety-provoking all by itself!)
My PTH continues to stay high. Currently my PTH Intact is 335. My Calcium is at 9.1 which is normal. My post dialysis Phosphorus continues to be low at 1.3.
I was put on Renatriol 1 microgram IV after dialysis thrice a week. Despite this the PTH does not seem to go down to normal. It has reduced from 450 to 335 though.
Is that all right? Should I increase the dosage? Is there a better drug I can talk to my neph about?
I had an issue similar, and it came back to my PTH being elevated. We tried numerous treatments, including additional calcium and Renagel (one of the worst meds I have ever been on - personally - it caused severe stomach upset), and ended up having amazing results with Sensipar as a previous poster mentioned. It is not covered by our drug plan - ughhh… but have found a compassionate care program to cover it (in Canada).
[QUOTE=kamalshah20;14655]I’ve been on dialysis for about 10 years now (6 years of PD and a failed transplant in between). I’ve been on nocturnal daily home hemo from the past one and half years.
From the last month or so, I’ve been having pain in my right knee. Also, when I climb down stairs, my knees feel wobbly and do not have enough strength. I need to hold the rails to be stable.
I’ve seen an orthopaedic doctor. He asked me to take an X Ray and said there are minor changes to the bone there due to the long term effects of kidney disease. He’s asked me to take Alpha D3 capsules that will help absorption of Calcium from the gut.
Does anyone know about this? What can be done to prevent further damage?[/QUOTE]
Like others who have posted to this thread, I began to experience bone problems when my pth became too elevated. I simply was not getting the correct dosing for vit D analog. When this was corrected, my pth came right down. When the pth was high, I first noticed bone pain in the finger joints. I asked about it and was told it was probably arthritis. The next thing that occurred was bone pain in the heels that was very noticeable, because my feet hurt so bad interfering with activities like going for a walk or shopping. I then started to feel generalized bone pain and finally knee pain when walking up and down stairs or bending down to pick something up. When I finally got the correct dosing for vit D analog (oral Hectorol), the problems improved almost 100%!
At present, pth and phos are in range, but calcium has risen to 9.8. My current dietitian says that vit, D analog sends calcium up, but as the dose is reduced it should come down. It came down .1, but has stayed the same for 2 months now. I will get labs soon and will know if it has dropped any lower. I am now looking for info as to what else I can do to see a decrease in my calcium. I am starting nocturnal txs soon and wonder if that will play into it.
Thanks for that very detailed description of what it felt like to have your PTH elevated. Isn’t it kind of amazing that a doctor’s first thought would be arthritis? It’s good to know that the correct treatment can make such a big difference.
10 years on dialysis is alot and the joint problems is part of long term dialysis. I have it too, it just gets worser with more years. Only thing you can do is slow down the progression by keeping your calcium/phosphorous in safe range. On some people the parathyroid surgey helps slow down the progression even more. Exercise by keeping the joints flexible helps too, sometimes painful to even exercise but helpful[/B]
[quote=kamalshah20;14655]I’ve been on dialysis for about 10 years now (6 years of PD and a failed transplant in between). I’ve been on nocturnal daily home hemo from the past one and half years.
From the last month or so, I’ve been having pain in my right knee. Also, when I climb down stairs, my knees feel wobbly and do not have enough strength. I need to hold the rails to be stable.
I’ve seen an orthopaedic doctor. He asked me to take an X Ray and said there are minor changes to the bone there due to the long term effects of kidney disease. He’s asked me to take Alpha D3 capsules that will help absorption of Calcium from the gut.
Does anyone know about this? What can be done to prevent further damage?[/quote]