Hello jc10,

For our purposes, plasmapheresis and plasma exchange are the same. It is somewhat more complicated, but let’s leave it at that.

At a minimum, the nurses need to know your hematocrit level. In many cases, they also need to ensure that your calcium level is adequate. In my case, the blood tests were CBC w/diff, Ca, Mg, electrolytes, creatinine, and BUN. The blood work is required frequently in the beginning (usually every treatment). One it becomes clear that your blood work is stable, the frequency can go down.

~MarkEns

Hello, I’m very sorry to hear about your mother. I had five (one per day) treatments of IVIg, when those didn’t work, I had to have five treatments of plasma exchange and they didn’t make a difference either. This was in 2006, today I’m fully independent and almost back to normal. I had GBS with Miller Fisher.

Plasmapheresis doesn’t work well for me on its own. I sometimes see very slight improvement, but within a week or so I am back on the brink of paralysis from the throat down. My docs have found that my body has a very fast turn around time with regard to producing whatever it is that attacks my nerves. What works really well for me is to get plasmapheresis every thursday & ivig every friday. I too tried the steroids, rituxin, cellcept, etc., but the only thing that works is this regime of pheresis & ivig. As others have said, everyone is different & you just have to find doctors who are willing to try different combinations until you come up with something that works for you. My nephrologist just came back from an international conference & he said that doctors were all over the board when it comes to treatment regimes for CIDP. He even said that some doctors were still having their patients use central lines & hadn’t even thought about graphs & fistulas for patients who get maintenance pheresis. That just goes to show that the doctors treating CIDP are very diverse. Some are aggressive, progressive & innovative and others are willing to give up when they hit a wall. Hang in there & keep advocating for yourself!

Hello Gary,

On the glucose issue, if you have a glucose tolerance issue or an impairment fasting glucose, you are probably pre-diabetic. What we call steroids are actually glucocorticoids, one of the two types of corticosteroids. One thing glucocorticoids do is increase glucose production. If you are already trending towards diabetes, adding glucocorticoids is like you to push you over the edge. Still, by changing diet and increasing exercise and accepting one day a week with high glucose, it would be possible to use pulsed steroids. It is a matter a weighing the management of diabetes against the management of CIDP.

On the plasma exchange, there is a reasonably good chance you won’t have a blood pressure drop the next time. However, there is also a good chance you will. I do nearly every time. It resolves to the point where I am no longer dizzy upon standing within 15 minutes. The treatment itself leaves me feeling a bit messed up for a few hours. I am functional, and occasionally go back to work afterwards, but I definitely do not feel great.

The event you had, especially if it was sudden, was a vasovagal event. It would be good to remember the symptoms. In my case, they include a slight nausea, a clammy feeling, an increase in tinnitus, and finally a disruption and narrowing of the field of vision. You can then monitor yourself and call for your nurse at the first signs. You will feel better overall for it.

Godspeed with the rest of your treatments,
MarkEns

I had 5 PE treatments when I was first dx with GBS (later cahnged to CIDP.) That was in April 2002 & they did not help me at all. Then that Oct-Dec I had them once weekly for 12 weeks, also had IVIG & solumedrol on the same day each week. None of these treatments helped me at all. But about the blood pressure, I have always had normal BP readings, except when I first came down with CIDP, then it was high for a few months. But when I would have PE my BP would drop dramatically toward the end of the treatments, which I think is common during this procedure. So because of what has already happened, I think they should watch you even more carefully.

I think with this procedure a person should know within a week or so if it is working. I consider it a very invasive procedure, so if you think it is making you weaker, I would disconue it, too many things can go wrong…
Pam

Carla,
I had five plasma exchange treatments in 8 days back in April of 2002 while inpatient at St. Marys Hospital in Duluth. I had been dx with GBS, them telling me at that time that I had the mildest case they had ever seen. I could still walk normally at that time & just had some numbness of the hands & feet. A temporary catheter was placed in my groin area & I was brought to a special room for the treatments. I was then sent home with no treatments & would continue to decline daily for the rest of the month, until by April 27th I woke up unable to walk, raise my arms & had lost most of the use of my hands.

Then in October after I had been rediagnosed with CIDP in May, when IVIG & solumedrol weren’t helping me much, my neuro decided to put me on 12 weeks of all three treatments, all on the same day. I had to go in & have an ash split catheter placed in my chest first. Then I would go in outpatient every Friday for 12 weeks to have the PE & rush home for my home health nurse to come to give me IVIG & solumedrol infusions. It was a grueling regime, but I was overall so sick then that I don’t even remember most of it. I tolerated the PE fairly well, although my blood pressure would drop near the end of the treatment.

Have you tried IVIG first, as that is a much easier treatment that can be given in the home. Either can work as well, but I would pick IVIG first, as it does not require a specail port to be put in first & can easily be administered at home…
Pam

I’ve been havig PLEX done regularly since November. I have a permanent port in mychest through which they do it. The procedure itself is not uncomfortble though sometimes it makes you tired the rest of the day. You’ll probably start noticing results after the 3rd exchange. it has definitely helped me but I keep having relapses so I’m getting ready to go on immunesuppressant therapy as well.