I had PP treatments wnen I was first diagnosed 11 years ago, they did not work well and I had to have a port put in which was contaminated with E-Coli during a carless flushing. I would suggest that you try IVIG over a 3 day period about once or twice month if you can get your Doctor to go along with it. That seems to be working for me, although I am having problems getting Obama care to pay for them as the are very expensive.
Larthur

[QUOTE=Bill]My first treatment for CIDP was PP. It really worked well. Only problem was access. After PP (5x each session) twice and thus in hosp 6 days each we switched to IVIG. 10 years latter we switched (big reaction) back to PP and again it worked well for 4 years (now back on IVIG) with some access problems but all in all – other than the 5 times a month at hospital – it worked well for me.[/QUOTE]

I have had cidp for 11 years and during a bad set back in 2005 I had a out a dozen pp treatments. I actually liked them and felt like a new person. But my first set of central lines got a staph. Infection which required a pic line and daily antibiotics for 1 month. Mayo clinic really wanted me to have these treatments more often but living in a small rural area made that hard. Although a was a great patient to observe since my disease were both rare. I wish you the best and remember to stay positive that always helps.

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

LInda,

Please look at my post today to steven about PP. I’ve had a bunch and have learned a few helpful things over the years. PP has worked wonders for me. I hope you read my post. Best of luck to you and feel free to e-mail me if you have an more questions about the procedure.
Fred

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