How Often for PP

November 1, 2008 at 11:42 pm

[COLOR=black]Hello Gary,[/COLOR]

[COLOR=black]I can’t remember, and I confess that I did not take the time to look back through the old posts, but is plasma exchange (PE) your only treatment? I ask because it is not uncommon to need plasma exchange every two weeks, as you are experiencing. When we were trying PE and CellCept (CellCept did not work for me), I was able to slowly increase the interval from about 17 days to 19 days, but I was feeling poorly the last four days. The one time I tried to push the interval to 21 days, I ended up in the hospital.[/COLOR]

[COLOR=black]I would push to have the PE more often, if you can, so that your nerves can increase their myelination. Still, I think having PE so often should be a short-term solution. Even my very generous employer was starting to express concern about the frequency of my PE. If you don’t manage to get to a longer interval, I would suggest you consider a combination therapy. [/COLOR]

[COLOR=black]My combination therapy works reasonably well for me. It consists of the following:[/COLOR]
[*][COLOR=black]azathioprine at between 2.33 and 2.5 mg/kg/day (depends on my weight)[/COLOR]
[*][COLOR=black]a slowly tapering dose of prednisone, now at 0.9 mg/kg once a week[/COLOR]
[*][COLOR=black]a six-week cycle of PE, by which I mean I have PE on Monday, Wednesday, and Friday, with a 1.2 volume exchange, and the next round starting 6 Mondays hence.[/COLOR][/LIST][COLOR=black]We are still adjusting doses, with the goal of keeping the PE at a 6-week cycle and the prednisone as low as practical. My desired goal is 0.6 mg/kg once a week of prednisone and PE on an 8-week cycle, but if I had to stay where I am or even up the prednisone some, I would be reasonably content. Yes, prednisone does have nasty side effects (I just completed my cataract surgeries), but I like being able to walk and work, so I put up with them.[/COLOR]

[COLOR=black]Do you have good enough veins that you don’t need a catheter? If you have a catheter, I have some practical tips on living with one. I have had mine nearly three years, with only a few problems. Let me know and I will spell out the tips again.[/COLOR]

[COLOR=black]We might see a cure in our lifetime, or at least something to send the disease into long-term remission, but we might not. I am living as if I will have it for the rest of my life, unless God intervenes. I know that He can heal me, but that He might not, and in fact probably will not. Devine healing is not an everyday occurrence, else it would not be a miracle. Unlike some, I don’t find lack of healing cruel or evidence that God is somehow missing. Instead, I find it a useful reminder that I deserve nothing from God except His enmity, and that but for His grace, I would be damned immediately. And in the long run, I will be healed.[/COLOR]