first time for plasmaphoresis. HELP!!

I have no experience with pp, but I did want to let you know that you are lucky your doc is following the reccommended protocol. How wonderful he has your best interest at heart. I am sure others with pp experiences will reply soon. Good luck to you.
Dawn Kevies mom

Hello:

I had about 20 sessions of pheresis. If you are lucky, like me, and they are able to use peripheral access in veins in each arm, then you will experience a little more pain than a normal IV needle, the needle gauge is definitely larger.

I had a fair amount of scarring and bruising from the needles. The procedure itself is painless, but you can get chilled. I typically had a pretty significant drop in blood pressure at the completion of each exchange, and would take about 10-15 minutes of sitting up, drinking some juice, eating a cookie, etc. to get it back up to around 100/70.

It did tend to wipe me out a little bit for the remainder of the day, but at the time I was having a serious CIDP flare, so I was experiencing lots of fatigue anyways. The pheresis itself was of modest benefit.

I’m in my mid 40’s, and besides CIDP, in good health.

Best of luck to you.

Steven,
If you go to my post, Plasma Exchange on the Main Forum, lots of great descriptions were posted about the process that was very helpful. Especially from Marc. I think it could answer some of your questions. Let us know how it goes for you as that would help me too.
Thanks. Good luck.
Linda

I have been doing them for about a 18 months. I do the treatments through the veins in my arms. Definately tell the nurses when you are experiencing tingling in your lips or face. They will adjust the rate of the machine as you tolerate. I would start an immune suppressant right now. Some can take 4-6months to become effective. (Mine took about 10 months) In the mean time these treatments will hold it off or knock it down when it flairs up. You should be able to spread these treatments out as the immune suppressant kicks in.

The plasmapheresis will basically wash the harmful antibodies out of your blood… until they build up again. Then it is time for another set of treatments.

I take 5 treatments if I am experiencing progressive symptoms and 3 if I am taking them preventatively. The five treatments are spread out about 2 weeks.

Feel free to e-mail me if you have any other questions.

I was given pp almost immediatly. A pair of tubes were surgically implanted in my neck and they ran down directly into my heart. I recieved five treatments over ten days using thirty bottles of Albumen each time. It stopped the progression but left me with residuals. I now use a cane to walk, can’t drive and am partially paralized. Things would have been much worse without pp. My residuals havn’t changed since the day I left the hospital, going on four years now. Have been told they never will and that most likely I’ll have a reacurrance in the future. It’s been my experiance that when a Dr. can no longer help you, they would rather not have to see you. Since you need meds they can’t ignore you completely, but they will rush you along and turn thier back on you at the earliest oppertunity. Of course this is just my opinion. All cases vary. I wish you the best on your journey of survival.
If I sound a bit disgruntled please understand that I am also an insulin dependant diabetic. Type 1 diabetes is by far more life consumming and aggrivates my GBS neuropathies. I admit I come here to vent because this is the only place where people understand. No one else can even imagine what it’s like.

Mike

I was given pp almost immediatly. I recieved five treatments over ten days. It stopped the progression but left me with residuals. I now use a cane to walk, can’t drive and am partially paralized. Things would have been much worse without pp. My residuals havn’t changed since the day I left the hospital, going on four years now. Have been told they never will and that most likely I’ll have a reacurrance in the future. It’s been my experiance that when a Dr. can no longer help you, they would rather not have to see you. Since you need meds they can’t ignore you completely, but they will rush you along and turn thier back on you at the earliest oppertunity. Of course this is just my opinion. All cases vary. I wish you the best on your journey of survival.
If I sound a bit disgruntled please understand that I am also an insulin dependant diabetic. Type 1 diabetes is by far more life consumming and aggrivates my GBS neuropathies. I admit I come here to vent because this is the only place where people understand. No one else can even imagine what it’s like.

Hi Steven,

PP has kept me functioning at a reasonabley normal life for over ten years now, so I am very high on the procedure. I have had over 350 PP’s since
1986. I have tried many other treatments including oral prednisone, IV solumedrol, cytoxin, imuran, cellcept, ivig, and avonex, none of which helped me any where near what PP has done for me.

I realized we all respond to each treatment protocol differently, so what has worked for me may not be the answer for you.

I just want to reassure you that PP isn’t bad. The needles are usually 16 or 17 guage if they do venipuncture, or you can have a vas cath surgically implanted. I had five of those early on, but they all got infected, so I have done the vein deal the past 5 years whith virtually no proplems with my veins. Make sure you are very well hydratred for the procedure as this makes the veins eaaier to locate and the exchange flow better.

My most helpful PP protocal has been a 3 leiter 5% albumin exchange, with 1 gram of calcium glutonate during the PP to reduce any side effects such as numbness and tingling. I do ocassionaly get chills, but a few warm blankest take care of that. They run my procedure over 90 minutes and I have no problems. After the PP I get 500mg of IV solumedrol. Early on, I would be a little tired and “washed out” after the treatment, but that went away after the first few peocedures. Now, when I finish, I get a coke and head to the car and drive home, no problem. I am now doing PP weekly as I have had a bad flare, but my procedures have streached out as few as once every six months when things a calm.

The best news is that they have started using 19 ga cardio caths which are smaller, flexable once inserted and greatly reduce scar tissue at the puncture site and are virtually painless when inserted. If you can, get you doctor to prescribe 2.5% Lidocaine cream. Put a glob on each arm at the puncture sites and cover with large band aid about an hour before the procedure. This makes the arm numb at the puncture site and you feel nothing when the needle is inserted. Also, put an ice pack on the puncture sites a couple of times in the evening after the procedure to minimize brusing. The the day after and each day until the next procedure, rub the puncture sites with vitamine E cream which helps keep the scaring to a minimum.

Hope this is reassuring for you and mostly, I hope you are as successful with PP as I have been. Good luck and let me know how you do.
Fred

Fred.

Thanks for the tips in your last paragraph. I am going to give a few of them a try.

Good luck Steven. Keep us posted on your progress.
Fred

Hi, Steven;

The needle hurts going in. I can’t lie about that! I have small veins and low blood pressure, which made the whole thing much harder. But it wasn’t terrible. I never dreaded going or anything. I had it three times a week over a 4 month period. Then my veins collapsed 🙁 . My neuro at the time didn’t know what else to do with me, and I found a new neuro. My next exchange was as an inpatient, so I had the catheter implanted in my neck. Now, if I need to go as an outpatient, I get it in my leg.

Some hints: ask for a blanket for the chills. HYDRATE!!! Drink plenty of water the night before–it plumps your veins and makes things easier for the techs (and for you). Eat a good meal before you go in. Have some entertainment handy if they don’t have TVs. I found it hard to read with the IV tubes. They had to use both arms for me–a lot of people just have it going in and out of one.

I have some scarring, but it’s barely noticeable.

Good Luck!

Marie