Hello there my friends

[cassandra]

Hi all, I hope you’re all as well as can be. Just wanted to get rid of this frustration in my head.


For few weeks now terrible pain from Amyloidosis. Return to unbelievable back pain. Probs with D. Trying to do 2 hrs daily. Put reQuest in for repeat Naproxen. Everyone busy because of Covid (is all okay with my friends everywhere? I hear so little from people in the States  ) Eventually a very sweet nurse brought me some. No pain !!!    But within 30 mins I was in the toilet with diarrhoea. GP. Hosp. Pharmacy Google etc. We’ll search for one that doesn’t contain L..... it doesn’t exist so far. It’s a very cheap bulking agent apparently. So now I take it with Lactase caps, en when that goes wrong with Loperamide too. It’s just infuriating that it’s known how many people have problems with Lactose, yet Big Pharma sticks it in nearly everything cos it’s cheap?


That’s it 

[MooseMom]

I don't often think of "filler" ingredients in our medications, but it doesn't surprise me.  I mean, all of our food has so much gunk in it, too. (Although I've certainly noticed that there is more "gunk" in foods here in the US than in the UK.)  So, have you hit on the solution for yourself, taking everything with Lactase?

I've often heard of amyloidosis and I understand what it is, but what does it feel like?  What is the pain like?  Do you feel pain everywhere, or is it confined to your back?  Does the Naproxen plus the Lactase help significantly?

I can certainly see how all of this is frustrating.  I'm really sorry about that.  What kind of problems are you having with dialysis?  Are they new, weird problems?

[UkrainianTracksuit]

Cas, you are truly a warrior, but this is so disheartening to know that you suffer.

MooseMom has similar questions that I do so I will not bombard you, but rather offer 

[cassandra]

Thank you my friends. The pain is like bad in my back at the minute. Sometimes my left knee. It’s surprisingly painful sometimes. Like having had an operation and forgotten to give you painkillers afterwards. (I had that when they removed my kidneys) It’s like a knife stuck in your back sometimes, and a dull pain when ‘all is well’.


It feels worse on D, it feels like slowly getting worse. Maybe Naproxen dialysis out, I haven’t Googled that yet 😆


So, yes it’s local, but can be in more than one place. I’m very grateful that Naproxen and Lactase works !!! Some times I actually feel ‘normal’, just a bit doped up.


Thanx for asking, and enjoy your day.


Love, Cas

[MooseMom]

Ugh, it is true that I tend to ask too many rapid fire questions, so thank you, cass, for being patient with me!  It's just I really want to understand more about what you are facing.

Anyway, it all sounds painful, and it must really sap you of energy. 

[kristina]

Hello cassandra and I am very sorry about your experience and it sounds like a very painful one. Unfortunately, we as the patients don't know much about many of these "fillers" in many medications and that can be a problem for many people who suffer from allergies, especially when they have no idea, how much of "it" is in every medication etc.

Hopefully some research/investigation is being instigated into this (perhaps by a little pressure from patients?) and the pharmacy-industry is hopefully being asked to think more about patients with allergies to some of the "fillers" etc.?  During my dialysis-years I was told that during dialysis itself almost "everything" is being dialysed out, so perhaps that happened with the Naproxen? What does your doctor say?

Good luck wishes from Kristina.

[Simon Dog]

What does you neph have to say about the Lixelle column for Amlydosis?   If its a no-go, be sure to ask if that is because it is in appropriate mechanism, or a cost/formulary/policy issue.   

[Hereware]

Hello there. I am sorry for what you've gone through. There's nothing much I could you with but my prayers and virtual hug. Stay strong.

[cassandra]

Thanx my friends, I have a phone consult with neph next Friday, Monday with GP to get a referral for pain clinic.


Simon I’ve been asking for the Lixelle column for months now, and have yet to get an answer. Btw is that column also usable for Nxstage?


Lots of love, and stay well. Cas