I had plasma pheresis 7 times in 2004. Plasma pheresis probably saved my life! I was going downhill so fast and I was already on prednisone and mestinon which were not effective enough for the disease. I was going to need a thymectomy. The port was ok. I had mine for 5 and a half months. While having the port implanted I was awake through most of the procedure and the Dr. and I were visiting all the time. You will not be able to shower with an overhead shower because you need to keep the port area dry. You can use one that has a long hose on it attatched to the shower head so that you can direct the water. The port needs to be dressed by special nurses at least 2-3 times aweek. Oh yes, after I had plasma pheresis for the 3rd time I felt like wonder woman...so much energy and strength improved. I had 5 treatments in September before surgery andf an additional 2 treatments about a month after surgery. Then the combination of meds and the thymectomy began to hold. If your dr. recommends this procedure, do it. It is well worth it and will give other things a chance to work.

I have had 16 PLEX (plasma exchanges) and currently getting a treatment every two weeks.

I take Tylenol before each treatment. Sometimes I get nauseated, but they can give you medication to help.

One trick I learned from someone else is to chew mints or gum during the treatment. This helps me not "taste" the fluid. Not everyone tastes it.

You may be tired after the treatment--it a lot of fluid change for you body.

For me, it works much better than IVIG, with less side effects.

I had plasmapheresis 5 times before my thymectomy last August. They put a quinton catheter in my neck because my frame is too small to accomodate subclavian line (under the collar bone). I was sedated for the line placement and it was only in for two weeks while I had treatment. I had treatments every other day and the entire first week I was horribly nauseated. Looking back I should have asked for zofran for the nausea. After the fourth treatment I began to feel better and a few days before surgery I felt like a new person! It was wonderful to feel normal again. Since I had the thymectomy 10 days after my last PLEX it's hard to say how long the improvement in symptoms lasted. I had some increase in swallowing problems right after surgery. The definite symptom increase came in October so I probably had at least 6 weeks benefit from PLEX.

Are you about to start this? It is possible to have PLEX done through peripheral lines, one in each arm. I understand it takes longer for the exchange this way.

So far I would say my response to PLEX was much better than my current response to IVIG. I am meeting with my neuro next week and one question I have for him is if we can try PLEX again. I just want to feel better.
Cathi

The reason why they are putting the chest port in is because I already have a port in my upper left arm that I use for IVIG but unfortunatly they can not use this for the plasmapheresis. And since they need to have an IV in each arm they cannot use the arm that already has a port in it. So they are going to be putting in a port line on tuesday morning early. I am really nervous and scared.

Be glad it will be in your chest and not your neck. I hated that thing and it hurt. The neck just moves too much to have something like that in it. Don't worry about the placement (I know, easy to say but hard to do). The procedure to place the line was simple especially since I was unaware. I think they gave me versed. It just erases your memory of the event, great stuff.

I have been having weekly plasmapheresis for the last 6 months. I am lucky in that I didn't need a port. I wonder....can they not use one of your legs for either the intake or outtake line? I have read about using lower limbs for lines.
How many treatments are you having? I started with every other day for 1 week, 2X weekly for 2 weeks, then every week for a month. I tried going to every 2 weeks but couldn't do it. The apheresis docs said there is no reason to get run down between treatments so moved them back to weekly.
Plasma exchange has worked well for me. I feel much stronger than I ever did with IVIG. I do have to have extra calcium in my return and still have had a couple of severe hypocalcimic reactions --muscle spasms and the sensation of my whole body vibrating-- and they aren't sure why. My nurse suggested bringing some Tums to eat throughout my procedure for symptoms (Tums is what they prescribe for me during a reaction).
I have about a 130 mile drive to and from treatment so I have to have a driver as I am sometimes tired afterward. If I didn't have such a long drive, I could drive myself but it's worth the trouble.
Since added tacrolimus, I just went 10 days between treatment and hope to continue to lengthen time between treatments.
If they can't use your lower limbs, hope your port placement goes well. I'm sorry you having stress over the procedure (anyone would).
Keep us updated,
~sherry

I am going to have 5 treatments over 10 days. They never mentioned anything about lower limbs, I could call tommorow and ask them about that. I have a feeling that they just want to place the port because it is easier for them.

I want to hear what you find out. I am interested in the possiblity of changing to PLEX from IVIG but can't see continuing to do the small amount of work that I'm currently doing with a port.

OK. :)

Sweety, if you can handle IVIG you can handle plasma pheresis without a problem!! The worst part of getting the tube put in is the anxiety. I have never had a pheresis tube put in where they didn't dope me up first, so once on the table even that goes away :)

As for actually having the tube in, it's not painful, just awkward, uncomfortable at the most. After a day or two you get used to it and go about your life as normal. The worst part of the whole thing for me was the giant piece of tape they put over the tube.

Even the actual treatments are bad at all. You may get a funny taste in the back of your throat and it may wipe you out , but thats just a good excuse to take a nap :) and besides, what it does for the MG is ABSOLUTELY 100% worth all of the discomfort!!

So worry away, because you can't stop that, but when its all done you will realize you did a whole lot of useless worrying :)

Good Luck!