Are there different kinds of plasmapherisis?

Does it matter who does it?

Why some dr require hospitaliztion and others do as outpatient?

Same questions I got.
Mike

The difference is the kind of port that they put in you to do it with. I had mine done in hospital the one and only time I had to have it. The port was a temporary line that would not be safe from a germ perspective out in the community (not saying the hospital is any kind of germ free area.... just that it isn't safe to have that kind of line in your neck when wandering around town.). If I were to have it regularly, they'd put in a more permanent port / pik line and do on an out-patient basis through that line.

They use a tunnelled catheter whenever I've have it. Its similar to a picc line, but routed under the skin differently. I suppose its up to the radiologist which he wants to use. One of the radiologists told me never to do the one thats placed in the neck or groin as the chance of infection is much greater (as Brennan mentioned). One thing I found this last time...I took my Sandisk Clip with me and listened to music while they put the line in--much less unpleasant than it had been in the past (but then there was also the anesthesia nurse who was surprised that I could recall the last line insertions and said she'd do something about that).

There actually are different kinds, based on what they are trying to remove from the blood. For our purposes, they're trying to get antibodies, so there is only one kind. The nurse told me that they can calibrate the machines to remove stem cells and then use those stem cells to cure certain types of cancer. Not really relevant, just thought it was interesting.

I wonder if different machines are better, worse? Older machines versus newer machines from aging perspective as well as from sophistication, technology perspective?

For example, many times DUI arrests based on breathalyzer test results can sometimes be tossed by discrediting the maintenance of the machine used or even the operator...wonder if same is true with regard to plasmapherisis machines
.

Steph, Has your doctor considered IVIG? Plasmapheresis is often used during an MG crisis situation and not as a regular treatment. I know there are some patients who do get it regularly but it's usually because their MG is more severe or "brittle." And, yes, with some patients it does work better than IVIG.

You really need to know all of the potential side effects of it. It's not without complications.

Every patient is different. Some patients have more than one condition that makes it important to have it done in a hospital setting. Just have a good conversation with your neuro about all of this.

Annie

For now he has increased pred to 20 mg per day (last week) and it seems to be helping more than the 10 mg per day. My next apointment is oct 18. The neuro indicated he will consider other options at that time if not getting enough relief from pred. He did not say plasmapherisis but said other options he would consider require hospitalization which may be due to other unique logistical issues i have - i have elected to have a treating neuro that is 250+ miles away so i fly there for the day(s).

20 mg is not a really high dose. I doubt that 10 mg does much.

I know but i dread the horrible side effects at higher doses!

The dose of Pred isn't the only issue. Some people cannot even handle 5 mg. of it. It depends so much on metabolic issues and whether someone is sensitive to drugs.

Beyond all of the side effects, what is truly the most important thing to think about with Pred is how quickly your adrenal glands "shut off" and how hard it is while withdrawing from Pred to get them to kick back in! Why would the adrenals need to work when Pred is doing their job for them? Even at a very small dose, you still do get long-term side effects.

And like any drug, you can have "rebound" effects when you go off. MG can become worse while withdrawing or when you do get off of it.

In case you don't know, when an MGer has an exacerbation or crisis, IV Solu-Medrol is often given in a hospital and then followed by a low dose of Pred, fairly quickly followed by a withdrawal timetable.

MG can also temporarily get worse on Pred before it gets better. I didn't think it was working too well after my crisis but within 2 weeks, my face looked like I'd had a facelift. It still took another two weeks before I could get out of bed to make ONE meal. During my crisis, even my nose was drooping. I can't even stand to look at the photos I took from then!

If Pred were so easy to take, there wouldn't be all of those books out there telling you how to live well while on it. The tendency is to think that "It won't happen to me" when looking at all of the potential side effects of any treatment. If you talk to people who've been on any drugs, you'll know that's not true.

Good luck with whatever treatments you do, Steph.