plasmapheresis
 

Hey Everyone,
I have been "diagnosed" with MG for 2 years now. All of my tests come back normal, but all signs point to MG. Anyway, I finally was able to get in to a neurologist 2 hours away who specializes in MG. Such a relief to find someone who actually understands this disease.
He wants me to have plasmapheresis. Does anyone know how I might be able to find a list of places where this is available? So far the closest I have found is 4 hours of travel time, and that would be nearly impossible for me to fit in my schedule, especially since he would like me to have 5 treatments in a 2 week time span.
Any ideas?

Hi and Welcome gooberobu!

There are folks here who have had both IVIG treatments and plasmapheresis - though I am not one of them. It's a rather long process from what I have read here and can only be done in certain places due to the equipment required. IVIG treatments, on the other hand, can be done in one's home.

I have never heard of anyone having that many plasmapheresis treatment done in such a short time span....but others in the forum will have much more and better info than I.

Whatever you decide to do, I hope it makes you feel a great deal better.

Hi, your neuro is probably the best source of locations where you can receive plasmapheresis. Is he the one who suggested the location 4 hours away? I would guess he has a pheresis unit close by if he is suggesting the treatment.

I had the very treatment schedule he is suggesting for you, 5 treatments over the course of two weeks, one treatment every other day. It took about and hour and a half for each treatment. I had a triple lumen line placed in my jugular vein for the treatments which meant they went quickly because there was large vein access. I had a lot of nausea for the first week but felt great after that passed.

Good luck, I hope you find a place close by.

gooberobu,

where in a general consensus are you located? It would help out letting us know so we can find a place for you. Yet I believe you neuro would know better...

But please before you start plasmapheresis...ask your doctor about IVIG. Plasmapheresis is used much more for emergency situations, and I used up all of my plasmapheresis (now as my immune system is so low, i cannot do it- per my neuro). IVIG takes longer....yes. but not really becasue you usually only do a few days versus over two weeks.

I found plasmapheresis to work wonderfully when I was so weak i couldnt eat/breathe/chew on my own...but i personally think it shoudl be saved for if you ever need to have it done during a crisis..but im no neuro, just a doctor in training:).



ive had it 60+ times, so if you do have any questions, please, do no hesitate to ask!

Thanks everyone for your responses. I'm not new to MG, but I'm definitely new to this whole plasmapheresis stuff.

I'm in Michigan. The doctor is w/ the University of Michigan. I was under the assumption that I would be able to have this done at any hospital, but I'm finding out that this isn't true.

The neuro is tweaking my meds by increasing my mestinon and adding Robinul in hopes of decreasing the stomach issues. He wants me to call him back this week to let him know how I'm doing and if I want to follow through with the plasmapheresis.

For some reason he didn't want to do the IVIG. I questioned him, and he said that it was an option, but that plasmapheresis is effective much quicker.

What do you mean, tysondouglass, when you say you can't have them anymore?

Hi. Welcome to the forum.

Why don't you call the hospital directly, possibly the dialysis unit if they still have one, and ask if they still do plasmapheresis there or at a local clinic?

Both plasmapheresis and IVIG come with risks and one isn't necessarily "quicker" than the other. It depends upon what you need. It may also be an issue of cost.

I hope you can get the details worked out and get some more help.

Annie

I suppose if I was in an emergency situation I could have it but my mg specialist said she has had some mishaps when her patients take both imuran+ partake in plasmapheresis. (not to scare you at all- yet death in two patients occured so she stated).

so having said that and being on a pretty high dose of imuran, I am supposed to request ivig when in crisis at the hospital over plasmapheresis for that reason.

I do believe plasmapheresis works quicker or it did in my case, but it didn't last as long for sure. maybe 2-3 weeks. ivig lasts me 3-4 weeks.

keep th questions coming!

I've been wondering when plasmapheresis is indicated. I was in the hospital for a week about two weeks ago with an exacerbation. I can see my MG has definitely gotten worse over the last few months. I'm having great difficulty being in any position other than lying down. I can't hold up any parts of my body for long. I can't ride in the car, or sit up at all for long without pain and strain, and paying for it later.

I'm having much more trouble eating, chewing and swallowing takes forever. Just for the heck of it, I counted how many times I have to chew a bite of a soft turkey sandwich before I can swallow it and it was 65 times. This was because I noticed my family can pretty much eat the whole sandwich in the time it takes me to eat two or three bites. Things just aren't working right anymore.

My hands are so weak most of the time I can't even pull the microwave door open or hold a plate of food. I can't squeeze toothpaste out, or shampoo. My hands and arms get fatigued from typing. I can't hold my head up so I'm always in bed.

I get IVIG every other week for two days. I am on Mestinon but can't tolerate much of it or I get side effects; twitching, my tongue stops working, and I can't talk right. I can only take 60 mg 2-3 times a day.

I don't want to try Prednisone or chemo drugs if I don't have to, nor does my neuro want to give them to me. I was thinking maybe plasmapheresis might be a next step?

I'd also consider getting my thymus out but my neuro wants to wait for the results of this current 5 year study before he refers anyone for a thymectomy. I was thinking of going for another opinion on that one.

What do you think about plasmapheresis/thymectomy? I want to avoid more drugs at all costs. I already take a TON of meds for many other things.

OOPS maybe I should have posted that separately! I didn't mean to take over your thread, I just got so excited when I saw "plasmapheresis" as the topic because it's been on my mind so much!

Tracy, you are more than welcome to post on this thread too. I am constantly trying to understand all of this as well.
It amazes me how each doctor uses such different treatment plans. My symptoms are not very intense right now, yet he wants me to have plasmapheresis. Yet, you are really struggling and the doc is saying IVIG.
I too take alot of meds and I absolutely hate it.
Where abouts do you live?