Most recent blood work indicates stage 3a CKD. Must admit I am a little fearful. My sister died at the age of 24 just weeks prior to my donating a kidney. I am on a different path in that my journey began with RA in 2015.
I am at a loss, do I go to my GP or my Rheumatologist? I do not drink, quit smoking six years ago. I do not know what to do beyond drinking a lot of water. Any advice or guidance would be appreciated.
I have no direct experience with RA, my son has PsA. However, I do know both are serious autoimmune disorders with a good chance of leading to kidney issues. I would have your rheumatologist to review your labs, offer his views, and refer you to a nephrologist if that's needed. (It may be possible he can simply adjust your meds and make things better.) I fervently hope researchers find a cure for these awful autoimmune disorders.
I have CKD stage 5 and have RA. My nephrologist told me to cut down on salt. When I became stage 4, my rheumatologist took me off of methotrexate. Reason for that was not because it hurt my kidneys, but because my kidneys weren’t working well enough to remove it and it could have built up to toxic levels. In my opinion, you should continue to see both your GP and rheumatologist. If you eat a healthy diet (try not to eat a lot of processed foods, watch your salt, and avoid dark colas, stay hydrated) along with regular exercise, that should help slow the progression of CKD. Good luck to you.
Thank you , diet is definitely on my list of adjustments.
Whilst not relevant to RA, you may be interested in a post I did earlier in the year on single kidney-ers which you can find by searching my posts (clicking on my name etc). Hope it helps.
Hi, so sorry you’re going through this. See a nephrologist And look into a genetic kidney disease called ADTKD MUCIN 1 and UMOD. It’s a recently discovered rare kidney disease that affects families. So many people have this and don’t know and blame their declining kidney function on things like NSAID use, mild hypertension, exposure to job related chemicals, history of auto immune disease or history of an infection like strep etc. Check out the rare kidney disease group on health unlocked for more info. Or google Dr. Anthony Bleyer.
my Rheumatologist responded by saying it was typical for someone my age ? I am 64 on the 25th. I need to contact GP as it is not RA ?
I am very disappointed. Canada’s health care has become , non existent. All appointments a via phone. Even that can take weeks. If you need emergency care , and can find a hospital that is open, it will take hours to see anyone.
I have managed my illness by becoming informed and determining my own course of action. Clearly not going to change that approach.
The only time a doctor is interested is when you are terminal but even that makes no difference. We have patients choosing physician assisted dying because they cannot access treatment. We do seem very concerned about providing safe drug supplies and treatment for addicts. What is happening in this country?
In my case, that stage, there is absolutely nothing to be gained by drinking a lot of water. I know because I asked my doctor. Drink I thirst. Stay hydrated but that’s it. It’s hot out at least where I live.
If you donated a kidney, and your kidney fails, you get priority for transplant. The minute you go into stage 4, get listed.
See a nephrologist and establish a relationship with them.
Stage 3a is a long was from stage 5. But a good time to see a nephrologist for sure.
I have RA my first auto immune then like you I developed auto immune kidney disease have had well over 20 years. I also have auto immune very early stage one liver disease. YUCK to all of them.
Diet is a big thing. Your very early and if you manage your diet very well you may be able to hold your own for a very long time.
I definitely see a rheumatologist and a GP and a nephrologist and a hematologist.
Dont drink well I wouldn't. cCongrats on quitting smoking I took did that years ago its tough but so glad I did. No dark colors. If your Nephrologist thinks you need a renal dietician I would take them up on that.
I think once you get the hang of it you will not fear anything you will have control.
best of luck
I had to go to emergency last Fall for kidney failure, (I only have 1). I had other issues going on that got fixed and kidney is doing better. Wasn't getting a lot of useful information from my health care providers for kidney health, so I started doing my own research, hence You tube. Diet is important. I focus on better quality food and nutrition to help my body heal. I limit my carbs which cause inflammation thru out the body. I try to take in healthy carbs when I do eat them. I limit food with Oxalates. I quit taking Ibuprofen. H20 intake is important, but not too much. Some exercise and enough sleep also help. There is a lot of info on You tube, but you have to kind of wade through it. I learn a lot from the comment section of the You tubers I listen to. I also started using Discountlabs.com to get my own blood work instead of having to wait on a doctor. Hope some of this helps.
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