Nearing stage 4

[madonbrew]

Hello,

Saw the neph yesterday &my egfr has dropped down from 37 to 33 in 3 months. My consultant didn't seem too worried, but it's feeling a bit strange being so much closer to stage 4. I know the numbers vary but I'm only 40&know at some point I'll need a transplant or dialysis.

I'm waiting for a Rituximab infusion as I have a random autoimmune disease. Was supposed to have it in March but was in hospital for 11 days with a severe asthma attack so it had to get postponed. Maybe that'll help.

Sorry for waffle...just needed to get that off my chest!

[Bassetmommer]

HI Madonbrew,

Just curious why the Rituximab infusion. I am on Orencia infusion for psoriatic arthritis (PsA). My CKD was caused because of the PsA. I have been on many biologics but I know when my PsA flares, it impacts of course my kidney. So keeping the inflammation at bay has been extremely important. There is a definite connection to rheumatoid arthritis(s) and CKD. Just asking.

GFR can fluctuate for many reasons including simply as being dehydrated. so keep track of your labs and see if there is a pattern. If you are interested, there are many things you can do to slow the progression and in some case improve through diet changes.

I was stage 3 for many years before a medication mistake compounded things and I slipped into stage 4. But I have maintained my GFR for over a year and improved many of my labs.

Let us know how we can support you.

[madonbrew in reply to Bassetmommer]

Thank you for your reply. Rituximab because I have a rare autoimmune disease called IgG4 systemic disease. When I got diagnosed when I was 20ish, I was only one of 100 in the world. I think there are a few more of us now as they've been able to diagnose it a bit easier now.

It started with my pancreas,bile ducts,gall bladder, then started to attack my kidneys about 8 years ago. Initially my egfr dropped from 84 to 40 within 4 years, but had stayed fairly stable since the Rituximab.

I know the numbers can vary...I guess it was just a strange feeling almost dipping into stage 4. I'm 40 years old.

[Bassetmommer in reply to madonbrew]

HI Madonbrew,

Yes, it is frightening and understandable. I was just a little older than you when I was first diagnosed with CKD. I remained at stage 3 for many years until another medication error caused my inflammation and diabetes to go out of control and I slipped down to stage 4. But I have kept it stable again through diet and proper medication

Make sure you have a good health care team working for you. You want everyone to work in concert. Make sure the medications you are on are not harmful to the kidneys.

When I was first diagnosed with PsA, it was considered a rare and unknown disease. The medications were limited. Now it is well known, (thanks to a pro-golfer) and there are a ton of medications for it, each one a little better than the last. Matter of fact, it was in induction of the early medications they put me on many years ago that caused my kidneys to fail. Now, there are safe medications that protect them and work on the inflammation.

From ncbi.nlm.nih.gov/pmc/articl...

"The past years brought rapid advances concerning this novel disease entity: diagnostic criteria, further insights into the underlying immunological processes, new biomarkers, and novel therapeutic approaches were proposed and widened the knowledge in the field of IgG4-RD"

Let us know how we can support you.

[CEF77 in reply to Bassetmommer]

Try to find the Facebook group ‘ natural kidney journey .

X

[Bassetmommer in reply to CEF77]

I am not sure if you were posting to me but I did subscribe to that groups and it is way too radical for me. I would not be able to stay on that restrictive of a diet for any length of time. No oil, no sugar, no flour, no taste! lololol

[CEF77 in reply to Bassetmommer]

Hi,

I was trying to reply to the post but was rushing out, thus the one sentence reply. I know what you mean about being radical- I don’t follow everything. I use oil, flour etc. I still sort of use it as a reference point.

[Bet117 in reply to Bassetmommer]

Well stated, Bassetmommer!

Thanks for sharing !

[rabbit01]

Hello, Your consultant sounds much the same as mine. Mine is so laid back she is almost horizontal. My one had already made up her mind that I was heading straight for dialysis and did nothing to help. I was actually down to 17% kidney function before even being diagnosed. Like you I was only in my 40’s so it came as a huge shock. I carried on working full time in a very demanding job for a further 4 years until it reached 12% in June 2018 and by that time I was feeling pretty rough and getting confused and started making mistakes at work so I decided to go sick and then leave work all together at the end of 2018.

I also have Asthma and an autoimmune disease called IGAN which is what messed up my kidneys but I have never been offered any treatment to try and slow down the progression and have been constantly told that “it was too late for me and all I had was scars in my kidneys” So you may be lucky and the treatment helps you get a more kidney function back so don’t give up hope.

One thing I have learnt is that stress and worry has a major negative impact on your kidneys and in hindsight I wish I had of given up work when I was diagnosed and spent quality time with my family rather than keeping going into work each day. Since packing up work although financially it has been very tough, I am sure the reduction in pressure has had a good effect in slowing down the progression. I am currently at 10% but not yet on dialysis.

Like Bassetmommer says eGFR can fluctuate for all sorts of reasons so don't get too hung up over an isolated low score. You will have found already no doubt what a great bunch of people we have on this online community so you will get lots of support and good advice. All the best.

[madonbrew]

Thank you both for your support. I'm off to Spain in the morning for 10 days and don't know if I'll have any Wi-Fi.Will post again when I'm back&if I can sooner.

Thanks again! Hope you both have a good week&keep ad well as possible!!

Dee

[Bet117]

Hi Dee,

No need to apologize for the waffle, it's all frustrating and that's what we are here for.

Bassetmommer is correct that your egfr will fluctuate so don't be terribly alarmed. Hydration, diet and many other sorts may effect it.

I am glad that your GP and consultant are working together. Go one day at a time.

Do let us know how you are.

Bet