I read a post at another site where someone said that in elderly patients on hemo for over 5 yrs. DRA ( dialysis related amyloidosis) or Beta2 Microglobulins attack tissues in the arms and legs and that is why so many dialysis patients have difficulty walking. Does anyone know more about this?
Yes, its a fact…its real.
It attacks the upper extremities first, hands, shoulders, kneck, elbows…then from there it may attack foot joints, ankles, knees, and hips…
In my case scenario, my hands, shoulders, and kneck are not quite well…
What exactly does it feel like?
Hehehe, you seem to be very worried. You shouldn’t be very worried at all. Just live as if there’s no tomorrow… 
I don’t want to go into details and put fear in you, but all I can say its not fun at all… 
On the other hand, keep in mind that I have been in-center for a very long time, more than doing daily-short…so beeing in-center 3x a week may have had something to do with it. Back in the old days dialyzers were not that good…low-quality and the dialysate was of low quality as well, so now that I am at home I have faith/hope that the damage is nearly halted or has slowed down…only way to find out is time, time will tell whether daily dialysis helps. :roll:
Still, I’d prefer a kidney transplant…
Gus I am not the type that has fear. I’d like to know what type of damage exactly it causes. In the post I read the lady said that after 5 yrs of in-center dialysis elderly patients can not walk. That sounds pretty bad and we see many patients who must use walkers, wheelchairs. So maybe it affects elderly one way and long term patients another. I just want to know, do you experience stiffness, pain, what is it like? We hate it when the doctors keep things from us-we need to know the reality. Can’t live in make believe.
You really want to know? First, you tell me who you really are and your email… 8)
Please email me… visit my site and email me from there and will tell you…
Deal? :roll:
Heather can you define elder? All I can tell you I know some elderly patients if 70’s qualify that have been on dialysis 5 years and they are still walking.
My dad is 82 and he is still walking and not complaining of anything except arthritis which he had before dialysis and its comes and goes in spurts. Maybe he is doesn’t have the problem because he was only in-center 2 years and home on nocturnal for 5 1/2. I wonder when we read these articles if it means EVERYONE or just some dialyzors.
There are many factors involved in whether elderly people on dialysis walk or not besides amyloidosis (which tends to take many years (e.g., 15+) to develop–so most elderly people on dialysis probably do not have it, simply because they haven’t been on that long.
Other factors include:
– Diabetes - the #1 cause of kidney failure often causes neuropathy, which makes it difficult for folks to feel their feet, and causes pain. Jane posted a very interesting article on a link between potassium and neuropathy on a different thread.
– Dialysis-related neuropathy - even among folks who are not diabetic, long-term 3x/week short treatments seem to leave substances in the blood that are toxic to the nerves. No-one is quite sure what those substances are (potassium?).
– Deconditioning - people who don’t feel well tend to become less physically active, which can lead to a downward spiral of deconditioning. This causes muscle atrophy, makes falls more likely, and ultimately people may end up in wheelchairs. Exercise is absolutely essential for people with kidney failure, because toxins in the blood tend to kill off some of the capillaries that feed muscle tissue, which reduces exercise capacity. These can re-grow if you become more active. I like to tell people that the body is like a rechargeable battery, and exercise is what recharges it.
– Strokes - Folks who have had a stroke may have weakness in their legs or on one side of their body that makes it difficult to walk and makes a wheelchair safer.
Bottom line–don’t assume that all walking problems are caused by amyloidosis. The likelihood is that very few of them are.
There can be a significant results between age, but you’ll never know until further research is done on that matter.
Maybe some people tend to buildup amyloids more than others and I believe that could hold true…
Some people on dialysis have higher noize or static, or may I say reactive C in their blood than others…perhaps that has something to do with how amyloids react but really I don’t know…
…but again, don’t worry about it. Live like there’s no tomorrow…
Just about all the people I’ve seen at dialysis who need to use wheelchairs or walkers are indeed older, but, they almost invariably also have diabetes. Diabetes does affect the limbs significantly, and it predisposes to diabetic neuropathy. Some have other rarer systemic disease which causes their renal failure. Things like scleroderma, for example. Is it a problem for most? Maybe, maybe not. We can’t stop to worry about every thing that could happen. At some point, we do the best we can and trust that things will work out, just like everyone else. Most of us younger people (if 52 can be considered younger) are waiting for transplants, and even with long waiting lists, we will probably get one before those kinds of problems happen.
I did have one buddy at dialysis who was 90. He walked no problem at all, and even drove himself to and from dialysis every time. I don’t think we can generalize these things either way. But in fact, I had many acquaintances at the dialysis centre who were seniors and they all walked on their own. This was a large dialysis centre, so I knew many people there from all walks of life and all ages except children.
Pierre
Wow sites like this really are important. I never knew any of this stuff before I read it hear. Not that I wouldn’t have done dialysis if I had known it but still I think it’s good to know about it.
Just one more thing the drs didn’t tell me about.
What I’ve heard from patients that have amyloidosis is that it causes bone and joint pain and often they have to have surgery for carpal tunnel syndrome. Here’s an article published in 2000 on amyloid, including factors that have been found to correlate with amyloid and factors that seem to reduce the chances of developing amyloid. Daily and nocturnal dialysis have become more popular so they’re not mentioned, although CAPD is and certain types of dialyzers are mentioned.
http://www.eneph.com/pdf/v29n6p325.pdf
It is true that some dialysis patients use wheelchairs and some use walkers or canes. Then again, there are some people who aren’t on dialysis who use walkers and canes. Whoever told you that patients on dialysis over 5 years were all in wheelchairs was either 1) exaggerating or 2) must only see patients that are poorly dialyzed.
I worked in dialysis clinics from 1978 - 1996. I had many patients who got around very well after many years on dialysis. Some of the ones that had been on dialysis the longest (20+ years) had started as teens or young adults. Others were older and started in their 50s-80s.
Interestingly, I know one pateint who said that having a transplant after being on dialysis for years helped her avoid some complications of long-term dialysis. She also said that having spells of dialysis between transplants helped her avoid long-term complications of transplant too. Not knocking transplant, but you need to be aware that there are complications of transplant (besides rejection) such as cancer, diabetes, cataracts, weight gain, acne, unwanted hair growth, gum overgrowth, and more.
Here’s some more articles about amyloidosis…
http://www.umm.edu/altmed/ConsConditions/Amyloidosiscc.html
Online Support Organization
http://www.amyloidosis.org/whatisit.asp
Gus, you are a wealth of information. Thanks!
Thank you Dori, your welcomed! 