Protein Amyloid

[Jmccool]

Is anyone familiar with Amyloid Proteins and how they effect the body?

Thank you!

[Hidden]

The closest I could come to an answer that was not filled with medical jargon is the one I listed below from the Mayo Clinic. I hope this answers your questions. If not, I'm sure that others will be along and perhaps offer more specific advice.

mayoclinic.org/diseases-con...

[Jmccool in reply to Hidden]

Yes this is what I’m referring to I think this could be what’s causing my husbands joint pain. His shoulders, arms and wrists he can hardly move. I feel like I’m beating my head against the wall he has now said he will get the PD cath in January. Because his GFR is “only” 9.7! He doesn’t understand that his whole body is being effected by the poisons built up inside him. He can hardly move I know he has RA but the Humira is working for his psoriasis I know this is kidney related.

[Hidden in reply to Jmccool]

I'm glad to hear the article was on point. It's also good news that your husband is going to have the surgery for the PD cath. Once he learns the benefits of this and sees his health improve he should become even more enlightened. A good way to begin the new year.

[Bassetmommer NKF Ambassador in reply to Jmccool]

HI JMcool,

Have you mentioned this to your doctor because it looks like it is something that can be determined or tested for. There is no cure, so I truly hope that is not what is wrong.

I am going to say it one more time however, go see the rheumatologist. Have them check if he truly has RA and not PsA. And this why I say this. I too have psoriasis. It is totally managed for years. The drugs I have been on will clear it up but have often not touched the PsA. If is Humira is working for the psoriasis, it may not be enough for the arthritis.

If he can get that inflammation in control, he will feel much better all around. PsA is manageable. The article I read said "Secondary (AA) amyloidosis is treated by controlling the underlying disorder and with powerful anti-inflammatory medicines called steroids, which fight inflammation."

webmd.com/cancer/lymphoma/a...

ok, I am done.

[Jmccool in reply to Bassetmommer]

Thank you and we haven’t discussed it yet with the doctor but plan on it and rhemotologist is scheduled. But he can’t as we all know take steroids at this time due to his kidney failure. He’s so depressed and this morning so upset talking about the dialysis and how he will be hooked up to a machine and have a tube sticking out of him. I get it but if that was my only choice I would do it so it’s frustrating to watch him suffer but more to watch him fight getting help.

[Bassetmommer NKF Ambassador in reply to Jmccool]

I know it is is lot to deal with. Biologics are not steroids. Just so you know. And many are actually kidney friendly.

Hang in there, you're doing amazingly well.

[KidneyCoach NKF Ambassador in reply to Jmccool]

Amyloidosis for kidney patients is usually limited to those who have been long-term dialysis patients i.e., greater than 10-15 years. Since your husband isn't yet on dialysis it is "possible" amyloidosis may be present however with your husband's RA and psoriatic issues and taking humira I would be far more inclined to think they are the root of the problem and perhaps his low kidney function is exacerbating those issues. Humira also has its own unique set of side effects that should not be dismissed due to low kidney function. Best to discuss this at length with his rheumatologist, nephrologist. Make a list of questions and exchange concerns and issues you both have. This is a very complex issue that none of us here could even begin to advise. Please get to his doctors and discuss your concerns. Get ANSWERS. Let us know how it goes. Blessings

[Jmccool in reply to KidneyCoach]

Thank you