Amyoidosis-why am I just hearing about this now?

[happyonhemo]

I have been generally happy on hemo for 14 years with some minor complications such as a parathyroidectomy,a cardiac blockage removed with 2 stents put in,4 carpal tunnel surgeries,a few fistula revisions and after a few years of prednisone,bi-lateral hip replacements due to avascular necrosis.I have always done my best since day one to get my hands on all the available info I could to educate myself about my condition and to try to be proactive with my healthcare but I am just now finding out about Beta2M Amyloidosis.For those of you who are unaware of this,it's a condition that develops in long term dialysis patients. There are other forms of this but I'm just talking about Dialysis Related Amyloidosis(DRA). I first discovered this when I was looking for information about carpal tunnel syndrome recently as I'm preparing for my 5th carpal tunnel surgery and was wondering why it kept coming back.Amyloidosis is basically caused by the collection of certain amyloid fibrils which are proteins that are not dialyzed off.After time,which can range from 5 years to 20 years and on,these proteins collect in various joints and organs and cause trouble.There is no cure for this and the best you can do I'm told is to dialyze as often as possible with daily being the best choice followed by nocturnal and lastly,3x week.Even doing this won't reverse the condition.It seems at best it will halt it.It seems to mostly affect the shoulders, the heart,the GI tract and of course cause carpal tunnel syndrome. I would appreciate any feedback on this if maybe I got any of this wrong or if you can add any thing,please do.I am outraged that the possibility of this happening to me has never been mentioned to me in all these years by any of my many docs.If I had had known,I surely would have rethought about my choice of modality.I am now on nocturnal but would like to be at home.Not sure what to do now.

[willowtreewren]

Hi, Happy.

Is there any reason why you couldn't change to home hemo? That is what my husband does, with me as his caregiver. We chose that route because everything we read pointed to daily dialysis giving the best results.

I have not heard of Dialysis Related Amyloidosis (DRA) before, so I will be looking into this further. I appreciate your post with this information.

There are many, many knowledgeable folks on this forum. I hope someone else has additional information for you.

Aleta

[RightSide]

Please don't be outraged.  If your doctors discussed with you every possible conceivable complication of ESRD or dialysis, it would be a very long discussion indeed.  You have to take these things as they come.

Note that amyloidosis is much more of a problem with hemodialysis, not peritoneal dialysis.  Hence if you can switch to peritoneal dialysis, it may help.

If not, you may want to ask the manufacturer of the dialyzer you use, how good a job it does at filtering out beta-2-microglobulin.  (Don't bother asking your neph; I'll bet you he won't know.) 

The Baxter Xenium that my center uses, filters out beta-2-m roughly one-fourth as efficiently as it filters out urea.  That's better than nothing.

[Wallyz]

My neph is convinced that extended Home hemo deals with beta2 microglobulin better than in center.  Longer times helps, but he also sees benefit from ultra pure dialysate vs sterile dialysate, as the sterile can introduce microbe origin beta2-M into the system.

I would look around, ask about nxstage , and work towards getting home.

[happyonhemo]

Wallyz-Thanx so much for your input.Thats exactly the kind of info I was hoping to get.You too,RightSide, thanx.So Wallyz,are you saying that NxStage uses ultra pure dialysate?

[jbeany]

yup, Nxstage with a pureflow system uses water from whatever source you have at home, so their filters are made to get the water as close to ultrapure as possible.

[Wallyz]

Yep- what she said

Here's a page from Oxford Journal of Medicine

The major clinical effects of improved fluid quality are seen in a number of inflammation-related parameters. Levels of interleukin-6 and C-reactive protein fall significantly within a couple of months, serum albumin concentration and other nutrition-related parameters improve, anaemia management becomes less drug-dependent and plasma concentrations of ß2-microglobulin and advanced glycation end products are reduced. There are even signs that residual kidney function is better preserved

[willowtreewren]

There are even signs that residual kidney function is better preserved

WOW! That is great news! We have been doing NxStage with the  bags, but will be switching to Pureflow as soon as school is out. My husband still has residual kidney functioning, so this is really good to know.
 

Aleta

[Zach]

Sterile and pyrogen-free infusion solution is used for volume replacement in hemodiafiltration (HDF).

[happyonhemo]

Huh?

[Zach]

Sterile and pyrogen-free infusion solution is used for volume replacement in hemodiafiltration (HDF).

It's another form of dialysis, used in the UK.

[happyonhemo]

That sounds interesting.Does it help amyloidosis any? Also,Zach,I see that you've been on dialysis for quite a while. Do you have any symptoms of Amyloidosis?

[Zach]

That sounds interesting.Does it help amyloidosis any? Also,Zach,I see that you've been on dialysis for quite a while. Do you have any symptoms of Amyloidosis?

Answer to your first question:  Yes, hemodiafiltration has been shown to reduce ß2-microglobulin as well as other "middle molecules."

The answer to your second question:  Yes, I have some clinical symptoms of amyloid deposits.  Some stiffness in my knees and fingers.  But I was lucky because a year into starting dialysis, my nephrologist put me on the first high-flux, biocompatible filter available in the U.S. (and no reuse). That lowered my exposure to ß2-microglobulin.

[Sunny]

Very good information to be aware of, thanks for the heads up.