CKD with ANEMIA and STARTING RETACRIT

[Ladyboomer]

Hi everyone, I'm new here but certainly not new to CKD. The anemia started in 2008 and would come and go and attributed it to working for a cancer physician where getting lunch on a heavy chemotherapy patient day was next to impossible, and sometimes leaving work at a decent hour was out of the question. I turned 65 and had the chance to go part time so I did. That helped a great deal with my anemia until 2015 when my nephrologist recommended I have a bone marrow biopsy to be sure he wasn't missing anything. Came back with the problem being in the bone marrow in that it was releasing red blood cells prior to maturity and therefore dying off in the blood stream. The problem was decreased amount of epogen to allow the red blood cells to mature in the bone marrow before being released. Another problem - medicare ( I live in the usa) refused to pay for procrit or any of the generic injections stating my hemoglobin was not low enough at 9.9, and so we did B12 injections weekly to help with the fatigue. It helped somewhat until May of this year when my hemoglobin dropped to 9.3. FINALLY, I had to almost be crawling to the doctor before they'd approve RETACRIT, a newer generic of procrit. It is given sub q monthly and my first shot was July 17, and weekly blood tests are required. My question--has anyone here had procrit or retacrit injection and with the first weekly blood test, the BUN and CREATNINE levels increased to 23 and 171 and my GFR dropped to Stage 4 at 28. I have been stage 3 for 10+ years with GFR range of 39-51 and BUN/CREATNINE highest ever was 20 and 128..

I am just wondering if I slipped into stage 4 overnight and now looking at dialysis or is this a side affect of the injection until my body become used to the drug.

Thank you for any reply. Have a great weekend.

[orangecity41 NKF Ambassador]

Welcome to the forum and thanks for sharing your story. Am sure will be some answers to your questions and posts on Procrit and Retacrit. Good to know there is a generic. I too have anemia related to CKD. (I am at level 3b). I too am on Medicare so understand the dilemma you were experiencing. I too do not qualify for the Procrit treatment as HCT is not low enough for Medicare approval. B12 is helping me also. Keep us posted.

[Jayhawker]

I had hemoglobin testing at 5.6 before I was finally put under treatment for anemia in September of 2013. I would honestly be winded literally sitting up in bed. I could barely walk to the restroom. I spent the days in bed etc. It was miserable.

My nephrologist started me on Procrit. I got injections once a month if my hemoglobin was below 10.0. The Procrit would improve my function for a few weeks and then it would deteriorate again.

I didn’t experience a decrease in renal function during the 18 months I was on Procrit. He shifted me to a medication called Auryxia in spring of 2015. That has been a major game changer for me. I take three doses a day. It’s an oral medication.

But for your initial question, Procrit did not reduce my renal panel data.

Jayhawker

[Ladyboomer in reply to Jayhawker]

Hi Jayhawker, nice to meet you. Thanks for replying. Well after 4 mo now, my kidney functions are going back to the normal range, albeit, at a snail's pace. I do notice more energy than I've had in quite some time, although I will say, when I get tired, I get tired, NOW! Hoping that will change as well to gradually getting tired.

Thanks

[Ladyboomer]

Well, this is a follow up to my post about anemia and starting retacrit.

Medically I continued doing well until December 23. I was incredibly tired and fatigued. My shopping being done I concentrated only on food from whole foods store. I was more than exhausted on Christmas Eve. I washed clothes, made chicken soup, napped, and Christmas Day felt quite a bit better. Next day I slept off,/on the whole day. Dec 27 I woke up and could barely inhale. I tried forcing air in and no good. My friends who were in called 911. After a myriad of tests at the hospital. I was told I had pneumonia. The doc stopped, took a breathe and said you also have cardiac, renal and pulmonary failure along with congestive heart failure and we are air evacuating you to Phoenix Banner Good Sam Hospital. We can't treat you in Cottonwood, so off I went.

7 days later I was released with severe mitral stenosis, alports syndrome, chf, stage 2 kidney disease. My GFR dropped,, actually plummeted to 19. It has come back to 37 after 3 months but will probably never be in the 30s again. I have an MRI in May 4 to determine the severity of mitral valve and and if the heart sac is stenotic as well. The alports disease was confirmed thru a diagnostic hearing exam and goes along with deteriorating kidney disease.

So for now I wait for the MRI and results and go from there.

Have a good weekend everyone!

[Jayhawker in reply to Ladyboomer]

Wow! You’ve been through a lot! Thanks so much for sharing. Please let us know how it’s going. And, nothing but good thoughts and best wishes.Jayhawker