Megace/Oxandrin

[imckinne]

I'm new to this forum...my 76 year old mom was treated with ATG the last week of May 2009. Had a subanachroid bleed and another bleed around her spinal cord (despite a platelet transfusion that morning, her count had dropped to 7000 while the ATG had sent her blood pressure through the roof). At the same time lost her visual processing ability, was essentially blind..but neurologist believes this was from the one day on Cyclosporin - she went toxic immediately. So, needless to say, she has had a bad outcome. 4 weeks out now and she's a few days into rehab but very weak. She continues to require 2 units of platelets about every 2 1/2 days, packed red cells about every 4-5 days. WBC was at .4 for 4 weeks but went to .5 3 days ago, .6 2 days ago, and .8 yesterday...seems like insignificant changes but the doc seems hopeful.

THe doc wants to put her on Megace and Oxandrin, saying that her albumin is very low and suggests she is malnourashed...that despite eating well, she is not processing the proteins and that these meds will support the bone marrow and muscle development and help her become stronger and to get more positive results from the ATG. BUT, th elist of side effects are frightening...most common are liver toxicity from one of them and blood clots from the other.

Is anyone familiar with these?

[Marlene]

I can understand not wanting to try these meds. If I understand the mechanics of these drugs, the first is to stimulate appetite. If she is not having a problem eating, then I too would be suspect of this drug.

The second is an androgen steroid (aka. testosterone). Again if the problem is with absorption of nutrients/protein, i don't understand how this will help.

Why not look at 1) what she is eating and 2) giving her pancreatic enzymes to break down the food. The pancreas secrete enzyme so you can digest carbs, proteins and i think fats. The gall bladder secretes bile for the digestion of fats. In the event she is lacking in the enzymes, this will really help. They can do a stool test to see what's going there.

I know we really needed to up John's protein intake once he came off of IV nutrition. You need alot of protein to heal. She needs to get a good amount of protein and good fats at every meal. Many use Ensure to boost protein intake. We stayed away from it though because it has too much sugar and we are not in favor of using artificial sweeteners. We made our own with a good whey protein we got from John's chiropractor.

I also wanted to add that testosterone has been used to stimulate blood production in those with SAA. It has worked for some, but not all. So it is a hit or miss therapy.

Marlene

[imckinne]

After talking to a couple of other doctors, my understanding is that these meds are supposed to support the metabolizing of proteins. I would certainly prefer a more natural and alternative means, e.g. the enzyme concept, but it seems impossible to get the doctors to think in this manner. Once she is home and we have more access to alternative options I am sure we will move in that direction but with her still in a hospital/rehab setting, and with me in another state, the situation is very difficult to influence.

Thanks!

[Marlene]

Ah yes....I understand challenges you face when you are trying to help long distance. And, being able to influence nutrition while in the hospital/rehab is near to impossible. And I've seen what they feed patients in rehab/nursing homes.

Hopefully, they will start her on one med first and at the lowest possible dose.