Hello all,
glad I found eveyone at this temporary home.
For those that have been following Max's story, just wanted to let you know that Max has started on the maintenance dose of Lysodren (dosing at the low end of 25mg/kg/week, split into 2 doses).
I am happy to report that Max has not had a bad reaction to the Lysodren as far as I can tell. He's had 2 doses so far and the third is tonight (62.5 mg capsule per dose - which I had compounded).
I am relieved that we are through the first week. (I was worried about starting Max on the Lysodren, even at a maintenance dose).
For those unfamiliar with Max's story, we did NOT go through the loading phase because Max's cortisol levels are relatively low. He had been diagnosed as Atypical Cushings and we tried the Melatonin and Flaxseed oil with Lignans route for a year, but it didn't help. I do want to note, that I recently realized that I had been giving Max an extended release type Melatonin pill (had not been evident on the bottle, but found the info on the GNC website). This is NOT what I should have been doing, and I have since changed to another brand. I also was giving Max Flaxseed Oil with Lignans and have since changed to Flax Hulls.
I am continuing both the Melatonin and the Flax Hulls in conjunction with the Maintenance dose of Lysodren.
My plan is to retest with an ACTH stim test in 3 weeks, and we have our fingers and paws crossed that the cortisol levels come down. If not, then I imagine we will increase the dosage.
for reference, below is a recap of his most recent bloodwork:
_____________________________
March 27, 2009 adrenal panel from Univ of Tenn - baseline (baseline normal range) - post ACTH (post ACTH normal range)
Cortisol ng/ml - 22.1 (2.0 - 56.5) - 192.7 (70.6-151.2)
Androstenedione ng/ml - 3.1 (0.05-0.36) - 5.8 (0.24-2.90)
Estradiol pg/ml - 84.0 (23.1 - 65.1) - 91.4 (23.3 - 69.4)
Progesterone ng/ml - 0.11 (0.03 - 0.17) - 2.5 (0.22-1.45)
17 OH Progesterone ng/ml - 0.08 (0.08 - 0.22) - 1.77 (0.25 - 2.63)
Aldosterone pg/ml - 24.8 (11 - 139.9) - 238.7 (72.9 - 398.5)
Comments: these results indicate presense of increased adrenal activity. Values are increased as indicated. The disease has progressed since the last test. Consider items 1 through 5 on the treatment option sheet attached. Traditional Lysodren treatment is probably not needed at this time.
_____________________________
I wanted to say THANK YOU to everyone's input when I was trying to decide which treatment plan to follow.
Janette
glad I found eveyone at this temporary home.
For those that have been following Max's story, just wanted to let you know that Max has started on the maintenance dose of Lysodren (dosing at the low end of 25mg/kg/week, split into 2 doses).
I am happy to report that Max has not had a bad reaction to the Lysodren as far as I can tell. He's had 2 doses so far and the third is tonight (62.5 mg capsule per dose - which I had compounded).
I am relieved that we are through the first week. (I was worried about starting Max on the Lysodren, even at a maintenance dose).
For those unfamiliar with Max's story, we did NOT go through the loading phase because Max's cortisol levels are relatively low. He had been diagnosed as Atypical Cushings and we tried the Melatonin and Flaxseed oil with Lignans route for a year, but it didn't help. I do want to note, that I recently realized that I had been giving Max an extended release type Melatonin pill (had not been evident on the bottle, but found the info on the GNC website). This is NOT what I should have been doing, and I have since changed to another brand. I also was giving Max Flaxseed Oil with Lignans and have since changed to Flax Hulls.
I am continuing both the Melatonin and the Flax Hulls in conjunction with the Maintenance dose of Lysodren.
My plan is to retest with an ACTH stim test in 3 weeks, and we have our fingers and paws crossed that the cortisol levels come down. If not, then I imagine we will increase the dosage.
for reference, below is a recap of his most recent bloodwork:
_____________________________
March 27, 2009 adrenal panel from Univ of Tenn - baseline (baseline normal range) - post ACTH (post ACTH normal range)
Cortisol ng/ml - 22.1 (2.0 - 56.5) - 192.7 (70.6-151.2)
Androstenedione ng/ml - 3.1 (0.05-0.36) - 5.8 (0.24-2.90)
Estradiol pg/ml - 84.0 (23.1 - 65.1) - 91.4 (23.3 - 69.4)
Progesterone ng/ml - 0.11 (0.03 - 0.17) - 2.5 (0.22-1.45)
17 OH Progesterone ng/ml - 0.08 (0.08 - 0.22) - 1.77 (0.25 - 2.63)
Aldosterone pg/ml - 24.8 (11 - 139.9) - 238.7 (72.9 - 398.5)
Comments: these results indicate presense of increased adrenal activity. Values are increased as indicated. The disease has progressed since the last test. Consider items 1 through 5 on the treatment option sheet attached. Traditional Lysodren treatment is probably not needed at this time.
_____________________________
I wanted to say THANK YOU to everyone's input when I was trying to decide which treatment plan to follow.
Janette
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