confused,trapped,and so,so alone.

[happyonhemo]

      I have so many problems right now and there doesn't seem to be any good answer so I will only ask one question here now:

I'm doing nxstage now,in my third year,but my caregiver is losing it so I'm trying to be pro-active.,thinking of switching to peritoneal but my biggest issue is b2m amyloidosis and I'm wondering if anyone knows which will remove more amyloid fibrils? Any input would be appreciated as I have no one to talk to about it and my doc can't give me a straight answer. I don't think I will live much longer going the way I am but I was paralyzed from the neck down from the b2m and have worked hard and long to regain movement and I don't want to do anything that would set me back.I still can't walk but being paralyzed is terrifying. No one seems to know anything about this disease making me feel that much more alone. Please help. Any info at all!!
 

[cassandra]

Dear Happyonhemo I'm really sorry to read about your situation. I'm a chronic HD user too, but don't have DRA yet, and hope to be in the small group of longtime D-ers who escape this one. I did read up on your possible choice between PD and HD.
I read that longer HD is better than short, and that DRA also happens in PD patients.

I also read in your letters that you, and your husband have recently lost your son, after caring for him, and having moved to do so, and friends, and family are far away.

So I understand that your husband is 'burning out', and so are you (I would think)

Are you doing short 5/6 days a week Nxstage? I found that schedule (1' year) a lot more demanding than the every other day schedule which I do now. Maybe try that? You'll use twice as much dialysate in 1 session which is twice as long, but the clearance is amazing. And less 'hassle' for your caregiver.

I'm sorry I couldn't be of more help.

Lots of love, and strength to you both , Cas

[happyonhemo]

Cas- Thanks so much for your response.Are you saying that you dialyze every other day at home? With nxstage?  I never even thought of this as an option but it definitely would help. I did in-center nocturnal before and I loved how good it made me feel but it was a long drive at inconvenient hours for my husband.Now they've closed so it doesn't matter anyway.  I know PD doesn't stop DRA but curious if anyone knew if it was better or worse when it came to the accumulation of amyloid fibrils. Anyway,I'm fascinated about your routine.I didn't even think of this as an option.Please let me know. Thanks.

[cassandra]

Yes I dialyze every other day on Nxstage, 5 hours with 60 liters. You can use the Nxstage-online calculator for that. And yes, at home. You probably need to change your sacks to ones with more potassium in, cos my K+ got way too low. I really hope it will help.

Lots of love, Cas

[obsidianom]

I did some research on this for you and it appears there is not much differance between peritoneal dialysis and hemo in terms of DRA damage.
I did find that ultrapure dialysate like Nxstage uses is helpful in cutting down the risk of DRA . How long have you been on Nxstage and how long were you on regular dialysis before that?
The other thing I found is there is some work being done with the medication/antibiotic doxycycline for treatment of DRA. Ask your neprologist about this as it seems promising.
I agree that every other day Nxstage can work and there is a way to do it  if that would help matters.  You would need longer time on machine each treatment and more dialysate.
Hang in there and let us know if there is anything else we can do.

[Dman73]

There are some promising technologies awaiting development that focus on the treatment of DRA.

David S. Eisenberg (a UCLA researcher) has identified 2 compounds that disrupt preformed human -2 microglobulin fibrils which are involved in DRA and has a patent available to be manufactured
(google / Tech ID: 20142 / UC Case 2006-584-0 ).

    also

Lixelle S-15 system that is in use by Japan (google / kaneka-med.jp/english/products/apheresis/px_001a)

[obsidianom]

On -line intermittant hemodiafiltration  may be the best answer in the future. It has been used successfully in Japan and is becoming bigger worlwide except in the US due to FDA concerns with purity. Fresenius is working on this for the US now and it may occur .  It definatly shows better results in DRA issues and overall quality of treatment.

100mg doxycycline daily was used sucessfully on some patients with DRA and was very helpful with symptoms and progression of the damage. It was used a year with few problems on these patients.  It may be worth looking into with your nephrologist.

[Dman73]

Survey of the effects of using Lixelle system for adsorption of β2-microglobulin in patients with dialysis-related amyloidosis in Japan.
The survey showed that Lixelle treatment improved symptoms or prevented the progression of dialysis-related amyloidosis in most patients
(google / http://www.ncbi.nlm.nih.gov/pubmed/23379492)

[jeannea]

If your caregiver is suffering burnout, I'm not sure PD would be any better. You never get a night off from PD. I think the setup is simpler than home hemo but it's still there every night. If you can try every other night it might be worth it.

[amanda100wilson]

I believe I suffer the effects of beta 2 amyloidosis too, which in my case has resulted in pain in my legs resulting from tendon shortening although this has not been actually diagnosed as such.  When you ask about this condition, it seems to be just ' swept under the carpet'.  Mine really got going as PD stopped working for me, when I lost residual renal function, and my peritoneum started wearing out.  PD is not very effective at removing large molecules such as phosphate, so I cannot believe that it is wonderful at removing amyloid fribrils either.  Only longer hemo dialysis would give this bigger molecule time to move from the cells to the bloodstream.  All short dialysis does is remove what is in the bloodstream.  Would nocturnal in-unit dialysis be an option for you, if there is somewhere close enough to you that supports this?  Would help the DRA and also help the caregiver burnout problem.

[obsidianom]

I believe I suffer the effects of beta 2 amyloidosis too, which in my case has resulted in pain in my legs resulting from tendon shortening although this has not been actually diagnosed as such.  When you ask about this condition, it seems to be just ' swept under the carpet'.  Mine really got going as PD stopped working for me, when I lost residual renal function, and my peritoneum started wearing out.  PD is not very effective at removing large molecules such as phosphate, so I cannot believe that it is wonderful at removing amyloid fribrils either.  Only longer hemo dialysis would give this bigger molecule time to move from the cells to the bloodstream.  All short dialysis does is remove what is in the bloodstream.  Would nocturnal in-unit dialysis be an option for you, if there is somewhere close enough to you that supports this?  Would help the DRA and also help the caregiver burnout problem.

Doxycycline was tested on carpal tunnel syndrome and it helped a lot. It may help with tendonopathy like you describe. The patients it was used on in the study had better motion and flexibiity after using it daily at 100mg.