Secondary Amyliodosis . anyone have it?

I have to have a fat pad biopsy on Friday to find out if I have secondary amyliodosis. Has anyone else ever had to deal with this?

Hi there Aldb, I can’t say I have - I think it is pretty uncommon - but I have run across Anyloidosis in research for something else, and I can understand it may feel a bit scary.

I just wanted to see how you are going?

Thanks Jen75. I am nervous but optimistic. If I have it, it will be caught because it is my tongue that is swelling. My kidney numbers are fine and my liver is stable so I think I am lucky. I think, from my research, the short life expectancy comes from a diagnosis when the kidneys are already failing so I am ahead of the game. Wish me luck for Friday!

I have no idea what this is… But good luck on Friday! It’s always best to have an early diagnosis!

It is a rare complication from inflammatory diseases. It can be very serious but , yes, early diagnosis will be very helpful. Thanks!

That’s my understanding too, so great to hear :slight_smile: Good luck for Friday!

Definitely good luck for Friday!

Hey there, my response to that is not yet. Keep us posted if you do not mind. I like keeping up with what could be down the road. I continually question if my doctor knows what in the world is going on with me so any insight you have regarding this territory could be quite helpful to other people suffering from this horrid disease. We know that systemic inflammation is the real issue at heart with this disease and so I am having trouble buying into how rheumys go about diagnosing folks based on certain regions of the body being effected more than others. As far as I know there is no rhyme or reason that determines where the inflammation activity targets certain areas of the body vs. others. I do know this–that the immune system is tricky and can adapt to biologics. I know mine did. If you do not mind me asking. What made you aware that you had this issue? Hang in there and hope for the best. I wish you well.

Hi - I just started with methatrexate (I had an awful Rheumy when first diagnosed and only took motrin so I skipped right to Humara which I became immune to) so my Doc asked I had any mouth sores. I said no but my tongue doesn’t fit in my mouth any more. It is swelled with a scalloped edge. She immediately took a look and started looking at other things and then mentioned the amyliodois. I of course googled it and my tongue was exactly what was shown. I also have extreme fatigue. The good news is that my kidney function is great and my liver numbers are stable. I won’t get the results for about a week but I will definitely update. Thanks!

Hi Aldb, how are you going?

Well, the biopsy was negative so that is a huge relief. Don’t know what is causing the swelling of the tongue but at least it isn’t amyliodosis. Thanks so much for checking back!