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Sangye
11-05-2009, 08:05 AM
As far as I can tell, they only use Plasmapheresis for severe kidney involvement. Anyone know something different?

Also, I've seen a number of cases where those who receive it seem to go into remission or at least do much better fairly quickly. (Doug is one example.) I'm wondering what everyone's opinion is on that.

Jack
11-05-2009, 08:17 AM
See my post - http://www.wegeners-granulomatosis.com/forum/general-wg-chat/436-dialysis-2.html#post6730

Doug
11-05-2009, 12:11 PM
I was told at the time that I was on plasmapheresis because of kidney involvement. As you say, that seems to be the criterion for its use. I've been surprised where at least one person on this site reported more than two treatments with it, though, as the doctors in the rheumatology department at the University of Colorado hospital in Denver felt (in 2004) that any treatments over two returned little benefit. I'd be interested to hear if others have been told something else or if there was some difference in their condition that prompted greater than two treatments.

Luce
11-06-2009, 07:21 AM
I had plasmapharesis when first diagnosed a year ago now. I had severe kidney involvement even though I was initially admitted because I had coughed up blood. I was quarantined in a side room because they suspected tuberculosis and was forced to use a commode. It was only when a nurse came to empty it that she noticed my urine was a dark pink colour and the renal department were called.

I was then taken to another hospital to the renal unit and was told I needed 12 plasma treatments, one daily to remove all the PR3 from my blood and sort of "reset" my ANCA count so any chemo etc had a much better chance of killing off any more antibodies that were produced.
I actually had 6 plasma treatments in the end, one a day for 6 days with a day off in the miiddle of the week to receive 3 units of blood. Apparently when the blood is "cleaned" by the plasma machine you often lose a lot of red blood cells and my haemoglobin level was only 8 when they decided I needed a transfusion.
It was decided that another 6 treatments weren't necessary and I suppose the additional cost couldn't be justified for little additional benefit.

A year later and my most recent ANCA count was just 10, I'm on a maintenance regime of 1500mg CellCept and 5mg pred which seems to agree with me just fine.
I feel luckier than some in that wegs hit me hard and fast, it was picked up at the hospital wihin 2 days and I seemed to have recovered very quickly.
However I know some of you suffer with symptoms that don't immediately have bells ringing in doctors' heads and do damage slowly over a long period of time. It seems that the longer these symptoms prevail the more damage it does and the longer it takes to recover to a level where you can work and function 'normally' again.

I've said it before, I truly believe that the plasma treatment saved my life, or at least saved my kidneys as I had reached stage 3 kidney failure and only just escaped dialysis. I think it would benefit all wegs sufferers but is only offered when the patient's condition becomes severe enough to warrant the cost of the treatment.

Jack
11-06-2009, 08:03 AM
It is a long time ago, but I seem to remember having 4 sessions of plasmapherisis over the course of a week.

gmyi
11-12-2009, 01:01 AM
Helo

you can see abaut plasmaphoresis in that link plasmapheresis - definition of plasmapheresis in the Medical dictionary - by the Free Online Medical Dictionary, Thesaurus and Encyclopedia. (http://medical-dictionary.thefreedictionary.com/plasmapheresis)

Doug
11-12-2009, 02:35 AM
Gmyi- that was an interesting and informative link! Thanks for posting it.:)