View Single Post
  #9  
Old Sun Feb 5, 2017, 01:19 PM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Kelly,

I don't think any of us knew about these diseases when first diagnosed! I’m glad my experience can provide some benefit to you. I know I have been helped by the shared experiences of those past and present on this forum

I had my cyclosporine checked once a week when I first started on the high dosage. This decreased to once a month on the lower dosage. Now I never have it checked, as I know how my body metabolizes the drug and am on a low enough dosage. Checking the cyclosporine trough is done by a simple blood test 12 hours after taking the pills (when the levels are the lowest). No hospitalization is necessary. For me, a trough reading above 400 was too high. As Neil pointed out, the dosing is as much an art as a science, and different doctors will have different philosophies on the numbers to target for a trough reading, if any. Feedback from the patient is important as well.

It is very important that your sister has her magnesium tested periodically as well. Cyclosporine depletes magnesium in the body, and eventually, she will need to supplement with magnesium. Magnesium is a separate test that must be ordered and is not always on a doctor’s radar to check.

Prednisone will cause muscle atrophy among other issues. I think I was tapered all the way off of it by a month from ATG. Your sister will feel a lot better when she is off the steroids!

One other tip is to start tracking your sister’s blood results on an Excel spreadsheet. Things to track include: HGB, ANC, Platelets, WBC, RBC and MCV (all to see if/when the treatment is working). Also track AST, ALP, ALT, BUN, bilirubin, and creatinine (to monitor her liver and kidney function). I would make notes of the drugs/dosings that she is on at the time of the blood draw and whether she is fighting any illness. You will be looking for trends over time, not just for a single blood test result.

Hope all goes well!
__________________
55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote