For those of you who have been on dialysis for a long time, what long term effects have you experienced and does SDD, or SND, reverse any of the effects?
Hehe, fear the long term, it’s no good at all. :roll:
The most common…
- Nerve damage-Carpal tunnel
- Bone pain and joint pain
However, they can be minimized but not cured…best bet is a kidney transplant.
At this moment I think no one knows yet whether SDD or SND will reverse the effects but I think it can halt further progression…when I started SDD I already had severe carpal tunnel on both hands and had surgery on left hand but doc suggested to wait on the right hand as it is my side of the fistula…so time will tell, dunno yet…
Also want to point out that I had my parathyroid removed so there’s no severe bone pain as those patients who still have their parathyroids…however, maintenance of calcium needs to be steady…
Gus,
Do you know of any articles that explain all this? At what point did you develop carpal tunnel and bone/joint pain? What is the determining factor in removal of parathyroid?
Hi y’all,
Jane wrote:
Do you know of any articles that explain all this? At what point did you develop carpal tunnel and bone/joint pain? What is the determining factor in removal of parathyroid?
Don’t panic! Bone disease was a long-term complication of kidney failure, but there’s no guarantee that you will run into it. Our understanding of what happens and the treatments available are much, much better than they were 20 or even 5 or 10 years ago.
I swear I posted on the physiology of bone disease some time back, but I searched under every term I could think of and couldn’t find it. Here’s how it works:
– The failing kidneys can’t activate as much vitamin D (calcitriol)
– Without calcitriol, your gut can’t absorb as much calcium from food
– Failing kidneys also can’t remove as much phosphorus
– Your body wants to keep calcium & phosphorus in a precise balance (and level) in your blood at all times
– When your phosphorus levels rise and your calcium levels fall, your parathyroid glands produce parathyroid hormone (PTH), to try to trigger your kidneys to make more calcitriol, and to pull calcium out of your bones
– Your kidneys can’t make any more calcitriol, so your parathyroid glands keep trying and trying. Eventually, they enlarge (hypertrophy) and can’t shut off. This is called secondary hyperparathyroidism
Now that we know how this cycle works, we have ways to interrupt it:
1). Phosphate binders to take the excess levels of calcium out of the blood. (Non-calcium-based binders are less likely to cause other problems, like calcification of the blood vessels)
2). Vitamin D analogues to replace calcitriol (Zemplar, Hectorol) so your parathyroid glands don’t have to keep working & so you can absorb more calcium
3). Sensipar to tell your parathyroid glands to stop releasing too much PTH, and to lower your calcium and phosphorus levels
4). Some types of dialysis (especially long nocturnal) do a much better job of removing phosphorus, too.
The process of developing renal bone disease takes years. Any patient who started dialysis in the past few years should have the benefit of improved knowledge and better treatments, and–time will tell–quite possibly will not face the same degree of bone disease (or other complications like carpal tunnel syndrome).
There may be several articles on the net about this including the kidney school, but the best knowledgeable person about this is your Doctor and dietician…however, if you still inclined to look at some articles over the net then maybe these might be helpful…
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1774-9987.2005.00208.x?cookieSet=1
http://kidney.niddk.nih.gov/kudiseases/pubs/renalosteodystrophy/
Carpal Tunnel was a new word for me back then, never heard of it and didn’t even know the symptoms clearly. It all started with one of my fingers, it began to lock up when bending, through time it just got worse until the whole arm had severe pain, espcially while sleeping. The pain just gets quite bad that sleeping is impossible…once it’s in late progression it affects your whole hand, no more making fists, it’s all weak, no strength to do things you use to do like tying shoelaces, or holding a cup correctly, dropping things occasionally…I told my doctor a few times about this problem but nothing was done until it just was too late…I guess nothing can be done. X-rays were taken but nothing showed…sometimes I wonder they knew what it was but they didn’t want to tell me that am losing my hands…
The decision of removing your parathyroid comes when you can’t bear the pain in your bones anymore and that you can barely walk…
Though Sensipar is the best medication to treat this problem more than half the patients on dialysis don’t recieve it. Instead, they are given RocalTrol…the original, most affordable option. I guess those who have money fork out are the fortunate to use Sensipar…
Now who can explain adynamic bone disease which occurs when the pth is over-supressed from taking active vitamin D? Is the oversupression something that occurs, because ones doctor is not watching the vit. D administration closely enough, or is it something that can’t be prevented?
Gus writes:
The decision of removing your parathyroid comes when you can’t bear the pain in your bones anymore and that you can barely walk…
How many years into dialysis were you when you reached this point? I’ve heard many other patients say they had to get their parathyroids out. Was this before there were the meds we have today or due to pother reasons?
About 3-5 years of in-center dialysis…I was even taking RocalTrol which was worthless… :? …I have to say Rocaltrol is an okay medicine but not perfect like Sensipar…
If the insurance doesn’t want to pay for Sensipar and you can’t afford paying out of pocket expenses on Sensipar then the surgery is your only way to resolve the severe bone pain…but you’ll have to deal with taking quite a bit of calcium and keeping it steady…
On the other hand, speaking about Epogen, that didn’t arrive until 1983…so people in dialysis before 1983 revieved quite a bit of blood transufusions…
Even with the better control today, a few people on dialysis still need to get their parathyroids out. I know a few, and they haven’t been on dialysis more then 4-5 years. Oddly enough, the ones I know have all been on PD.
Pierre
Amgen started the first clinical trial of Epoetin alfa in late 1985 under the aegis of Drs. Joseph Eschbach and John Adamson at the Northwest Kidney Center in Seattle. Over the next year, the small phase 1/2 clinical trial confirmed that therapeutic doses of recombinant human erythropoietin stimulated consistent increases in patients’ hematocrit levels. Furthermore, the requirement for maintenance blood transfusions for the dialysis patients treated was eliminated.
Reports of EPOGEN®'s ability to improve anemia associated with kidney failure first appeared in the January 8, 1987, issue of the New England Journal of Medicine. Included was a review of the phase 1/2 trial and an editorial that pointed to "convincing evidence for the therapeutic effectiveness of recombinant erythropoietin in anemic patients on long-term dialysis." The author, Dr. Allan Erslev, said these clinical trials "fully confirm our expectation that erythropoietin can increase not only the hemoglobin concentration, but also the well-being of patients on dialysis."
The FDA approved EPO in 1989, it was in wide use in 1990/
Hi y’all,
Thanks to whoever posted the correct Epogen data. Epogen came on the market in 1989–the same year I started working in the nephrology field. 
Jane wrote:
Now who can explain adynamic bone disease which occurs when the pth is over-supressed from taking active vitamin D? Is the oversupression something that occurs, because ones doctor is not watching the vit. D administration closely enough, or is it something that can’t be prevented?
Most people don’t know that bones are constantly being “remodeled.” Calcium and phosphorus are removed (by cells called osteoclasts) and replaced (by cells called osteoblasts). Adynamic bone disease is a condition where bone remodelling stops, and the bones become painful, weak, and fragile. It can be prevented.
My understanding is that you’re exactly right, Jane–what I’ve heard can happen is that instead of using the PTH target for people on dialysis, some nephrologists use the target value for healthy people, which is 2/3 less. (It’s been a while since I wrote about renal osteodystrophy, so I don’t want to try to give the levels, as my memory could be faulty). This can lead to oversuppression of the parathyroid glands, and adynamic bone disease. It doesn’t have to happen, and can be prevented by having good protocols in place for monitoring PTH levels and titrating the treatments so the target levels are reached.
Har har, it was me :roll: …
Back in the early 80s’ a few patients and myself revieved EPO early, must’ve been the research study going on but I certainly didn’t pay attention on who else started getting it widespread…didn’t even know it was research at that time…was only about 12 or 14 years old…
Btw, there’s a new blood producing drug in the market, recently read an article about it but forgot to bookmark it…
Hi Dori,
Thanks for all the good info today. Do you know , or could you find out, if adynamic bone disease is reversable?
Hi Jane,
I did look in PubMed, but wasn’t able to find anything. If I get a chance, I’ll ask around. 