Hello All,

I am scheduled for plasmapharesis in the morning and am feeling quite nervous about the whole process. My neurologist is very conservative in his approach to my conditions mainly because I not only have MG but also Stiff Person Syndrone (which I'm finding out no one seems to know much about). But I do feel comfortable with his approach - he truly listens to me during my appointments and ask lots of questions about my condition and feelings about what I'm experiencing. He not only is concerned about my physical condition but also my mental condition.

I was diagnosised with MG in 2009 after the removal of a large thymoma. I have had horrible symptoms not only the weakness of the MG, but severe spasms related to the SPS. He first tried Mestinon which I'm very allergic to and it put me in ICU for about a week where I almost experienced congestive heart failure. Then he has tried six IVIG treatments which didn't seem to improve anything except deplete my insurance's bottom line.

I'm on about four different meds just for SPS all of which are mainly to "dumb" me down so that I can function. They still haven't been totally helpful in that aspect so I guess that's why he has finally decided to go the plasmapharesis route. I have to take Prednisone for my only severe MG symptom which is that my eyes lock in place and I have double vision - the last time that happened it took two months before I ended up in the hospital. He worked me up to a high dosage of Pred to correct the situation and we have slowly been decreasing the dosage of the last year and 1/2 to a maintenance level.

Anyway, back to the plasmapharesis - I've commucated with my best friend's sister who has Guillan-Barre syndrone and she has been through the plasma route. She had high praise for the outcome and her only complaint was that it made her very cold during the process. I'm scheduled for two treatments each week for six weeks. Then we will access the outcome. I'll have the treatment at Emory Hospital in Atlanta so I feel somewhat comfortable with that.

Thanks for letting me ramble on - I'll try to update you on my experience at some point. This site has been a fountain of information which I appreciate.

Southern Bell

Please Please keep us posted. I am interested in ALL details since this may be my next treatment. I have had 4 sets of IVIG and very little results. I take lots of Mestinon and Imuran but I think the meds are just maintaining my current condition and not improving my condition much. My wife is nervous about my plasmapharesis. I see my neuro on Thurs. If you feel up to it please post tomorrow the details.
Thanks
Mike

I just want to wish you well tomorrow as you begin your treatments.

I've had plex treatments only once (series of 4) when I had a crisis. I was in the hospital at the time and it was conducted in the dialysis unit. No pain to speak of. For me it was just a little "weird" when I thought about what was happening as I was lying there. If you get cold be sure to ask for a warm blanket to put on you. Make sure you go to the bathroom before going in for the treatment. I remember one time I had to go toward the end of the treatment and it made it worse knowing I couldn't get up and go to the bathroom.

I'll be thinking about you tomorrow! For me, the stress leading up to any procedure is far worse than the procedure itself!! Hope this the case for you and that the treatments make a huge improvement in the way you have been feeling. Pls. keep us posted!!

Thank you all for your encouragement. I was lucky to be able to visit the unit at the hospital during my last neuro visit and that helped to get a feel for what to expect. I met the nurses and they checked my veins to see if I can have the procedure done using the veins in my arms rather than having a catheter inserted in my neck (NOT my favorite option) and it looks like they can use my veins - we'll see. The nurse did tell me that it would probably take about 3 hours so be sure to go to the restroom before they start.

I figured that is one good reason to go buy some Depends so off to the drug store I went. I agree that when they tell you that you can't go you always have to, same as when you go to the doctor and they want you to go on command in the little cup - and you can't!!!

I'll keep you posted on my experience. Thanks again for all the support.

Southern Bell

Hi Southern Bell,
I wish that PLEX work as well for you as they are working for me .
I'm presently on a once-a-month exchange schedule and never had any problem with that treatment. They always used my elbow veins (excellent ones, they say...) and so I was able to avoid the ports...
The exchanges are conducted full speed and for my weight (80 kg), 4 liters of plasma are centrifuged in 80 minutes, preparation, rinsing and vein coagulation take about 5 minutes, so that the whole process is completed in about 1h45.
Be sure to take a good meal before your exchange and report to the personel any strange feeling in your mouth, lips or tong, it is a sign of lack of calcium and they should increase the calcium injection rate. Also, if you abnormaly yawn, it is a sign of lack of glucose.
Good luck to you!
Maurice.

Southern bell-

Yes, my two pieces of advice-

1. GO TO THE BATHROOM BEFORE YOU START AND DONT DRINKA LOT OF WATER BEFORE- its the worst having to go an hour in.
2. Dont stand up too soon...i thought I could get right up, fainted, and had a seizure my first time.

I have had it 60+ times, as I was using it therapeutically as you are doing now.

I used the veins in my arm EVERYTIME...and eventually they gave up and got sick of doing that...so if you do plan on doing this a long time, please try the cath as you veins may get sick of the treatment and prevent it from working.


please message me with any questions, but im sure your trying to get some sleep.

Hello all,

Just finished my first plasmapheresis treatment and as SueV said, the anticipation was much worse than the actual procedure. It took about 1 1/2 hours and the only uncomfortable part was getting started. They were able to use the veins in my arms and actually put some numbing cream on first before inserting the needles. That was the first I had ever known that was possible. What a wonderful thing.

Once they started the procedure, the needle in my right arm started feeling uncomfortable. It was the intake side and left side was the output side. They switched the input/output sides and adjust the needle in my right arm just a little. They indicated that sometimes the needle can touch nerve when inserted.

Otherwise, I felt no discomfort and the time went by pretty quickly. I did have a little bit of tingling in my upper lip at the end which is an indication of a decrease of calcium. The nurse had already given me an infusion of calcium, but just a couple of Tums seemed to releave the problem. I take a high dosage of calcium daily because of the medications that I am on anyway.

I was a little weak when I first got up, but I always have a problem with stiffness after I sit for a long period of time. I'm due for my second procedure on Friday and I'm not at all concerned. They encourage you to drink alot of fluids before and between each treatment especially if they are using your veins to keep you hydraded but this morning I didn't drink too much and made sure I used the restroom before the procedure and had on my trusty Depends just in case. But I didn't have a problem at all.

I hope all who have this procedure have the same success as I did.

My best to all,
Southern Bell

Southern Bell,

It's great to hear that all went well. Knowledge is power, and knowing what to expect I'm sure helped calm the nerves a wee bit.

Did you see immediate changes? Otherwise sounds a lot like IVIG.
Thanks and good luck with future treatments.
Mike