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Switched from Tacrolimus to Belatacept
Transplants | Last Active: 2 hours ago | Replies (89)Comment receiving replies
Hi Caretakermom
It sounds like you in the endless struggle too. So sorry to hear you can't even get a diagnosis for your husband. We are painfully aware of the anguish that accompanies that situation.
Sadly she actually is on 25 mg twice a day and her blood pressure is still up this morning. Her cardiologist wanted to double it to what he believes is the maximum dose but her nephrologist pulled the plug on that. She has been taking Hydralazine as well but it adds edema to her problems (discomfort). Not really sure where we should go from here but if I was a betting man I would put my dollar on back to the hospital but she has become extremely resistant to going back.
Can you give me a number on the smallest dose he was on with Everolimus for a sustained period. It always helps to have some idea where she could realistically start. Her nephrologist is very cautions and always seems to err on the side of over protection of the transplant (and we all know how well that has worked with tacrolimus - my wife has seen troth level spikes as high as 40 - which no one in the ER could even believe). So when your husband was doing the best when he was just on Everolimus (doese?) (no CellCept, no Prednisone), is that correct? Her struggle with anemia is also very frustrating. My dad had small call lung cancer and he really felt a lot better for a week of two when he got Procrit injections. My wife doesn't seem to even notice any benefit.
Best of luck with the biopsy results. When you actually have a treatment plan and clear goals life always seems so much better.
G
Replies to "@caretakermom Hi Caretakermom It sounds like you in the endless struggle too. So sorry to hear..."
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@geomusser
Geomusser,
The dose is going to be customized to each patient. The lowest Everolimus dose that worked for hubby for the last 3.5 years was 0.75 mg, BID. He was/is also taking Tacrolimus but a smaller dose than standard, trough range 3-5. No prednisone. But this past March the home neph said to increase dose because hubby was NOT hitting trough range, 4-7. Again, this trough range is specific to each patient. The increase was by 0.25mg increments(the smallest increment) and to hit his trough range he had to take 1.25 mg am, and 1.0 mg pm. This change in dose caused gradual anemia over a period of 4 months. To the point of losing 30% blood(compared to the previous labs)!! Had to have a blood infusion end of July.
Our hematologist/oncologist ran all sorts of blood tests, did "flow cytometry" to check for luekemia and lymphoma and both came back negative. The blood tests show no hemolysis and labs are consistent with bone marrow suppression(presumably by Everolimus). Checked for possible virus such as Parvo Virs B19 and CMV - negative. Recently did another CBC lab - counts look better because hubby now paused Everolimus. But we have to wait for the bone marrow biopsy results to see what it shows. I think the Procrit/Epogen shot should help hubby's anemia now that he is off Everolimus. His hemoglobin improved but is in the 9's - still low. It can take months to recover - he only paused Everolimus 2 weeks ago. Will ask for ESA shot at next office visit with hematologist.
May I ask who is the Mayo Az nephrologist you saw? We like Dr Mour. Is he still there?