Kidney problems taking with PMR and taking prednisone

No problems w Actemra. Off Predisone

My kidney functions were fine in December 2024. I was diagnosed with PMR February 20th went onto 20 mg prednisone on February 21st 2025. On March 14th I went to the ER for chest pains. I had developed Pulmonary hypertension and my kidney function was at Stage 3a disease. None of my doctors mentioned it to me and my focus was on my heart.
After a failed stress test and heart angiogram it was determined I had HFpEF - a type of diastolic heart failure. Cards wanted me off pred due to fluid build up. By now it was May and I was put on Lasix and told to taper off pred. My kidneys were still at stage 3a disease with no one discussing it with me.
I’ve been off pred and methotrexate (10 mg/wk) since October 7th, and in full PMR relapse. In October I pointed out to my PCP that no one has mentioned the rapid decline in my kidneys, which the recent tests showed a decline to Stage 3b. So he sent me to Nephrology where I had a kidney ultrasound that was “unremarkable”, and a Cystatin test that was not good. Last week I had another Cystatin test and my Cystatin-C was 1.84 and my estimated EGFR was 31. This was “stable and slightly improved” (docs words) from the first one in October which was 1.89 and 30 respectively. An EGFR of 29 is stage 4 disease. From normal to borderline stage 4 in less than a year with no explanation, and none of my docs appear concerned.
I also had a DEXA scan that showed I went from osteopenia to osteoporosis during that time on prednisone. So much damage to my body in such a relatively short time on Prednisone. None of which is reversible. And, of course, I’m in full PMR relapse with nothing but Tylenol.

@rocksology Sorry you are going through this horrible ordeal.
Was bloodwork done the first month you were taking prednisone? They are wanting me to have bloodwork done every month-basic metabolic panel and C-reactive protein. Have to seen a Rheumatologist? Seems like having someone that can manage all of the things you are dealing with would be great. Im sorry to make a general statement about doctors but sometimes they focus on their specialty or as I say: " body parts doctors", where they can't seem to manage different illnesses or conditions occurring at the same time. I'm sure it's tough to do but it's necessary.
I recently had blood work done and my eGFR was 49 so I made an appointment to discuss. I'm currently on 8mg once a day prednisone and working on slow tapering.

I started the prednisone in late January and 6 weeks later was when I went to ER with Pulmonary Hypertension. No contact with my PCP in between. I changed PCP’s in June because the original said she didn’t need to see me for 6 months. I have a Rheumatologist appointment tomorrow morning, but not having any expectations. Because she doesn’t live here, there is no follow-up provider if she were to give me medication. I’m pretty sure I’m going to be told there is nothing they can do to help me. My PCP has tried to find me a Rheumatologist since I started with him, he’s checked with every one in Central Oregon.
I have to practice acceptance that this is just the cards I was dealt and I either live in the pain, or live with it. Sigh.

@rocksology I hope the Rheumatologist will be able to help you tomorrow. Please let me/us know how it goes. Best wishes and hope it goes well.

@gigilea
How slow is your prednisone taper

@ursulam I'm reducing the amount of prednisone by .5 mg about every 30 days.

The interesting thing is that prednisone is used to treat CKD, so I suspect there is more to your CKD than just taking prednisone. Please talk to you doctors about trying to find the root cause of the CKD so that you can treat that and stop the decline of your kidneys. I was diagnosed with Stage 3a CKD earlier this year and I too ran into doctors who were casual about the problem. My eGFR fell off a cliff awhile back and no doctor was concerned, I was the one who went after a diagnosis and began lifestyle changes to curb the decline. As of today I remain at stage 3a and most of my changes have been dietary. We still do not have a cause, we are getting closer and it is getting more complicated - but simply put I am determined.

@gigilea the Rheumatologist said because there are no other doctors to follow me, there is nothing she can do for me. The only other doctor available to follow is the one who treated me so horribly and I won’t see him. She can’t prescribe anything but prednisone at this time, but because of my untreated Osteoporosis, she doesn’t recommend it. I left without a plan, but the consideration of referring me to “Pain Management”.
I’m done seeking help. I completely give up. She did refer me for an MRI on my right wrist, but I don’t think insurance will approve it as it isn’t a rheumatology problem. It is carpal tunnel, I think, but I’m not a doctor. Just know the hand, wrist and forearm are swollen without an incident, and I can’t make a fist.

If it’s carpal tunnel that is suspected an EMG should confirm it.