First Month of Reducing Cyclosporin (Gengraf), Health Observations

Started to reduce Cyclosporin (Gengraf) doses about a month ago (October 20, 2012).  With the improvements from taking Gastrocrom (Cromolyn), have gone back to alternating doses of Cyclosporin at 125mg one day, then 100mg the next. (Did this same reduction over a year ago, before switching to CellCept)  This is following Dr. Leiferman’s suggestions (10/5/12):

do the every other day 125/100/ for at least 6-8 weeks before tapering further. If everything is stable to improving (including labs, blood pressure, symptoms, etc.), I might then suggest 125 mg every third day, 125/100/100/, for 6-8 weeks, then 125 mg one day a week, 100 mg daily for the other 6 days of the week for 6-8 weeks, before tapering to 100 mg/day. You could stay at that level for 3-6 months, then taper again.

The first two or so weeks with the reduced Cyclosporin at 125mg/100mg alternating was a bit rough.

Small patches of skin did get thicker with redness.  These occurred mostly on the cheekbones, sides of the neck to upper shoulder, and lower abs.  Some application of topical ointments Triamcinolone, Desonide, and Fluocinide helped calm these areas and remove the redness.  Amount of topical ointments applied were about the same as before taking Gastrocrom + 125mg Cyclosporin: applying ointments 1-2x a day.

However, there were other factors that likely contributed to the small flareups, in addition to the reduction of Cyclosporin:

  • Hot & cold weather swings, getting up to high 90’s for a few days
  • On my Birthday, 10/22/12, we went to A&J Restaurant’s spicy beef noodle soup, which has quite a bit of soy sauce and other spices…but it was worth it
  • McDonald’s “Daily Double” hamburger, which has different flavors than the Big Mac.  Thought they were the same, but seems the Daily Double tastes of soy sauce in it as well.
  • Continued eating El Pollo Loco’s pollo bowl everyday except Sundays.

Two weeks ago, stopped the McDonald’s Daily Double and went back to the Big Mac, which helped.  Also, only ate El Pollo Loco pollo bowl on 125mg Cyclosporin days.  Skin quickly cleared up with less need for topical ointments.

This past week, tried to push things again and eat El Pollo Loco every day except Sunday.  I’m not seeing flareups on 100mg Cyclosporin days as I was before.  So, things seem to have stabilized except for the skin on the forehead, which isn’t flaring up, but feels thicker.


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