Amyloidosis

[cassandra]

Hi how are we all? I’m very worried about how the Corona pandemic is affecting us all. Not for me (at the moment) but it’s very quiet at the site.


I’m very worried about me having Dialysis Related Amyloidosis. I have terrible pains in my back. Started in my neck. Now between my neck, now shoulers and my spine. Did get Naproxen as painstiller. But  with the Covid-crisis it takes a long time to get MRI or X-ray. Also surprised that no-one on the ward had ever heard of it. Turns out they don’t have any D-ers longer than 20 years on the ward.


I hope some one knows something about it on the site.


I read that only in Japan a Licelle machine is used to remove Beta 2 Amyloids during dialysis....  I’ve changed my diet in low AGEs (nothing fried, baked, roasted etc. I’s a pity I never looked into this before.


But if anyone knows something about this, I would love to hear. This pain is ridiculous   


I hope everyone is as well as can be, and just quiet.


Lots of love to all, Cas

[PrimeTimer]

So sorry to hear about your pain, Cas! I hope you do not have Amyloidosis! That's a baddie. Can you be tested for it? Do they do Telemed appointments over there across the pond? Hope you find out what is causing your pain and can have it remedied soon. I'm sure you've already thought of this but maybe try a heating pad or ice packs. Hubby has been having awful back pain so we sympathize with you.   

[Simon Dog]

I read that only in Japan a Licelle machine is used to remove Beta 2 Amyloids during dialysis....  I’ve changed my diet in low AGEs (nothing fried, baked, roasted etc. I’s a pity I never looked into this before.

That would be the Lixelle Column, and is is FDA approved for use in the US since 2015:

https://www.healio.com/news/primary-care/20150306/fda-authorizes-lixelle-column-for-dialysisrelated-amyloidosis

It's not a machine, but an extra filter about 4" long +/- that is hooked up in series with the dialysis filter on the arterial side.

As with anything, you need to probe your neph and if (s)he does not seem interested in it, find out of that is a medical decision; cost decision; or constrained by dialysis chain policy

As to "not having heard of it".   I got a "that's news to me" response from a MD when I was in the hospital (well before my xplant) when I explained alloimmunization was the reason I was refusing transfusions.

[cassandra]

Thanx dear friends I’ve had CT scan from my back, B2M blood tests and awaiting a telephone consult next Friday.

[cassandra]

Update: bloods: B2m has gone up from 2.9 2 yrs ago to 28.8 Oops Amyloidosis it is. Tele consult next week with nephrologist.
             CT scan: Osteoporosis and some damage to cartilage and some deformed discs (which I put down to ageing and 26 yrs Prednison, and longterm dia) I friendly declined a visit with a rheumatologist and pain-clinic.


I started a diet with low AGEs (no fried, roasted, over processed food, no dairy (already milk intolerant so that part was easy. I miss my roasts etc) since starting to have porridge for breakfast (actually really nice is oats with earl grey tea  ) the pain has actually subsided.

[PrimeTimer]

Sorry to hear this, Cas.   

[kristina]

I am sorry to read about your predicament and hopefully the pain stays away. Best of luck with the new diet and all the re-thinking of your food-input. Could almond-milk be an option? Mind you, I don't know about its potassium... Best wishes and good luck!
P.S. The more water you use whilst cooking your vegetables, the more potassium gets "drained out". We also always drained our veggies with freshly boiled water after cooking, just to drain out as much potassium as is possible. Good luck!

[MooseMom]

I am sorry to hear that amyloidosis is the actual diagnosis after all.  Is this something best managed by changes in diet?  By how much has your pain subsided?  Enough for you to feel closer to "normal", or is the pain still a heavy burden?  What would a pain clinic actually offer you?  Anything beside meds?

Porridge and earl grey sound really nice!  I'll try that once it cools off here where it is a billion degrees outside with the humidity of the Brazilian rail forest.

I'm interested to know more about the result of your dietary changes, so as time goes on, let us know how you're getting on.  Take care of yourself.

[cassandra]

Thanx again sweet people. Sure, I’ll keep you all informed!! Yes the pain is liveable. I’m very surprised actually. All fried or baked foods (it’s mainly about the high temperature which changes molecules (or something like that)
They turn into AGEs (Advanced Glycation End products) they form plaques or fibrin strings in your body


[size=78%]https://en.wikipedia.org/wiki/Advanced_glycation_end-product[/size]


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3704564/




A dialysis machine can’t filter those out, so over the years they accumulate in your body and form strings and families    and stuff. They can settle anywhere in your body and cause PAIN. To be honest I think they must have something to do with illnesses like Alzheimers as well.

O Kristina, I use every single non-dairy milk in everything, and I really do know everything about Potassium after nearly 30 years D, believe me. But thanx anyway.

Love y’all, Cas

[kristina]

Hello cassandra,

All I can say is that I am truly sorry about your predicament and hopefully the doctors/dietitians etc. can assist you and find a good way forward.
To come across the "right" food these days can truly be very tricky, because we often don't even know about all the chemicals being used or put in etc.
I wish you good luck and send my best wishes from Kristina.

[PrimeTimer]

Update: bloods: B2m has gone up from 2.9 2 yrs ago to 28.8 Oops Amyloidosis it is. Tele consult next week with nephrologist.
             CT scan: Osteoporosis and some damage to cartilage and some deformed discs (which I put down to ageing and 26 yrs Prednison, and longterm dia) I friendly declined a visit with a rheumatologist and pain-clinic.


I started a diet with low AGEs (no fried, roasted, over processed food, no dairy (already milk intolerant so that part was easy. I miss my roasts etc) since starting to have porridge for breakfast (actually really nice is oats with earl grey tea  ) the pain has actually subsided.

cassandra:  If I am not being too intrusive, it's been a while and I was wondering how you are doing now with the Amyloidosis. Any better? Any worse or has it progressed? I am also curious about why you had said no to seeing a Rheumatologist or going to a pain clinic. Bad experience? Was it because you already have and they didn't help or you just felt that it wasn't time? Hope you are doing better. 

[cassandra]

Hi PT, thanx for asking. The pain got a lot worse, and the Naproxen really started hurting my stomach. So I took up on the referral for Pain management. As I already was afraid turned out to be useless. They rang every week to ask how I was feeling ....., and they couldn’t prescribe pain meds. By luck I got to speak with one of the GP’s I had not met yet. She actually spoke to the team in hosp and I was prescribed morphine. In the mean time my new machine has come. It’s a Gambro AK96. A monster. We are both being trained now, cos Hubby is home nicely shielding from Covid. And unbelievably the pain is already less (3 sessions) Apparently it’s the filter which is capable to filter the B2M out.


I made sure I had a bloodtest including B2M pre and post with the Nxstage, and I’ll have 1 of course with the Gambro. I don’t need to wait for the test. I know it works.


I’m seeing some sort of future again. 


Love, Cas

[MooseMom]

I had a look at the Gambro AK96 online; what an impressive piece of technology.  So, you're thinking that it's the machine's filter that is making you feel better?  I mean, it's entirely logical and so simple that it makes me wonder why no one else thought of this.  I'm very curious to see what your next set of labs show, specifically B2M (which admittedly I had to look up).

I'm thrilled that you are seeing a "future" again!

[PrimeTimer]

That's hopeful news, Cas. Glad you felt up to trying a new machine but what choice did you have, right? Hopefully you'll see more progress the longer you use it. From what I've read, Amyloidosis can be chronic and cause a lot of pain all over the body. I was wondering about the pain clinic because hubby has a lot of random terrible pain from diabetic neuropathy. You're smart and I trust your opinion and so wondered what you thought about those clinics. Please keep us posted on your progress. Cheers to you getting better! 

[cassandra]

Thanx friends, I’ll keep you posted.  .

[PrimeTimer]

Cassandra: 
How are you doing with the new filter and the Amyloidosis? Still improving I hope. If I may ask, did they ever say anything about whether or not you have FAP (familial amyloidotic polyneuropathy) being brought on by the Amyloidosis? I am curious because (and correct me if I am wrong) but I thought you were of Norwegian or Scandinavian descent. FAP runs in families of Scandinavia descent. So does the Sarcoidosis I have. The inflammation and fibers from Amyloidosis and Sarc can be very damaging. Sarc is also prevalent among black people. 


Sorry, have I another question: Have you cut out or lowered your sugar intake? I've read that sugar loves to feed inflammation and that by cutting it out/lowering it's use helps with pain caused by inflammatory diseases. I think there is some truth to that because lowering my own use seems to have helped. Not much but a little.





self-edited to add question

   

[cassandra]

Hi PT thanx for asking


The filter/ machine still seem to be getting on fine. The Amyloidosis is still there, but stabile. Only sometimes need morphine. I will ask about the FAP, I didn’t know that, so thanx.


Yes I lowered sugar for sure, I take supplements (ginger, turmeric, bromelein, doubled vit C to 250mg) against inflammation.


All those little bits do the trick (I keep thinking..)


Love, Cas

[PrimeTimer]

I am glad you are maintaining, Cass. Between the Sarcoidosis and various meds I am on and may soon be starting, I have to be careful about supplements so I tend to shy away.  For instance, the Sarc affects how my body uses and absorbs calcium/Vit D. I can go outdoors and get some Vit D from the sun but because of the Prednisone and Methotrexate I am on, I get giant hives, all within a few minutes. Turmeric can thin my blood. Anyway, we have to do what we know is best for ourselves or even what we thinking is helping us if we are feeling improvement.

I keep my med bottles in a large container. It's overflowing now. I imagine you've got a full arsenal as well. I look at mine and think "geez whiz" but I realize of course that a pill box doesn't define me as a person. I can put anything into it or take anything I want out of it. It's there because I choose to give all these meds (and  my doctors) a chance. Gee...they don't know how lucky they are! Yours too!   

[Hereware]

I look at mine and think "geez whiz" but I realize of course that a pill box doesn't define me as a person. I can put anything into it or take anything I want out of it. It's there because I choose to give all these meds (and  my doctors) a chance. Gee...they don't know how lucky they are! Yours too!   

No, it most definitely not. They sure are lucky! LOL