I was successful first time filling. A word of caution when filling out the paperwork. When you answer the questions regarding physical abilities, answer honestly but use your worst days to describe your limitations. Your doctor has to be very specific in his/her documentation of your limitations, so make sure your these are well documented in your medical records.

When I switched to plasma exchange my strength, balance and endurance improved very quickly. Initially, I was given five consecutive days of PE, then weekly until I was back to pre-decline levels then tapered down to twice a month, then monthly for several months, then stopped. My CIDP is relapsing, which is why I have been getting PE over the years (my dx was 1996). It has been the one treatment that has been able to manage my symptoms. I have been taking 2000 mg of mycophenolate mofetil daily for many years. My positive experience with PE may not be the same for others. I get 1000 mg IV prednisone after each PE.
The other measure to know if the treatments are helping is to compare nerve conduction studies. Once an initial study is done, this becomes the benchmark that future studies can be compared to which will show if there is any reduction in nerve conduction or if there is further damage to the nerves.

I have been on and off plasma exchanges since 1996. The only problem I have had was a drop in blood pressure and fainting during the very first exchange. I have had needles in the arm, perma-caths, and currently vortex ports implanted in my upper chest. IVIG was not effective for me and plasma exchanges have kept me active. I also get an infusion of 1000 mg of metholpredisone at the end of each exchange. My exchanges are done by the Red Cross and they use a blood warmer for the return line which keeps the body temp up. You may want to ask about that. Some times I am tired for a day or so after the exchanges, but that is infrequent. Hope the PE helps you.

My replies under rituxin may be of some value to you regarding ports. I have had hundreds of vein sticks, multiple perma caths with poor success (infections) and flawless success with my Vortex Ports going on five years now. Good luck with your future treatments

Hi Bob,
Yes cold weather is a killer for me also. My hands quit functioning when they get cold to the point I can’t even work a zipper. Has something to do with the loss of milan and tissue which protects the peripheral nerves. Once I get my hands warm again, the function returns. Do as much as you can to protect everything from the cold.

Have you considered other treatment options? IVIG does not work for everyone, myself being a case in point. After no positive results with the IVIG infusions, I tried Ratuxin with mixed results, prednisone, cellcept, several of the MS drugs and plasma exchange. Diagnosed with CIDP in ’96 (after having GBS in ’85), so have been fighting it for a long time. My current treatment consists of 2000 mg cellcept daily, plasma exchange every three weeks with a 1,000mg IV does of prednisone. This has kept me pretty stable for the past several years. As I am sure you have read on this site, everyone responds differently to the various treatments, and sometime the body builds an immunity to the various treatments reducing their effectiveness.

Regarding a neuro, you may consider contacting the Craig Institute. They are a premier spinal injury facility, but would think they would know a go to doc in Denver. Good luck.

I’ve fought this crummy disease since ’96 and certainly understand your frustration with IVIG.  Have you tried plasma exchange? Its  more invasive, but works for some patients as well or better than IVIG  ( multiple attempts with IVIG did not work for me) with few or no side effects. I have been doing a three liter PE with 1000 mg of solumedrol IV after the exchange and have managed to keep symptoms pretty stable. Years of 16 ga needle punctures took toll on veins( major scar tissue) so I had two vortex ports implanted in November and exchanges are pretty simple now. I do an exchange every three weeks now and am able to remain very active.

Hope you can conquer the side effects and keep the upper hand on the disease.