Author: Diane Hazley (165.89.84.---)
Date: 12-28-03 13:30
Trevor--Happy Holidays!!!
After months of discussion with my Internist, he has agreed, with some reservations, to use your protocol. He agrees with ARB, still skeptical on abx and my abililty to get thru the side effects. But we are moving forward. I was diagnosed with SARC three years ago. Last 9 months maintained high ACE levels inspite of being on Prednisone the entire three years. (Have been on 10mg past 9 months; higher doses prior. Have gained 80lbs--I hate it!)
Just got my "D" assay results and would like therapeutic clarification.
1,25 Dihydroxy=71
25-Hydroxy=7
D ratio=10!
Ace=110
My doctor wants me to maintain current therapy:
10 mg Prednisone, qd
10 mg feurosimide,qd (due to pedal edema)
10 mg Potassium,qd
(I gave him your articles on prednisone in SARC patients and he still refuses to consider titrating me o. I'll cross that bridge later. For now I will move forward with the Benicar and minocycline therapies.)
Started today, Dec 28, Benicar:
10 mg every 8 hours first 5 days
20 mg every 8 hours next 5 days
40 mg every 8 hours (next 2-2 1/2 weeks)
Please clarify Benicar frequency and timing of adding minocycline, given my D levels:
1) Benicar frequency- thought I read if herx is bad enough, go to 6 hour or 4 hour dosing intervals. (Have not received by-in from my doctor on the shorter frequency). How do you advise?
2) Should I wait until D ratio is <4 before adding minocycline? My concern comes from reading the ribbons suggesting D ratios >4 are at higher risk of severe herx--specifically needing to be emergency-room-ready for closing of throat muscles or heart attacks. Seems like the severe herx risk are minimize with a lower D ratio. Can I get the D ratio down to <4 with just the ARB therapy? If you feel the only way I will be able to get D ratio < 4 is to add abx, should I start with dyoxycyline instead of minocycline; then switch to minocycline after I get D ratio <4. Please advise.
Diane
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