October 21, 2017 at 12:10 am
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.October 21, 2017 at 12:01 am
Pretty sure IVIG is FDA approved for treating CIDP, so if insurance declines, suggest appealing their decision. You will find the same is true for plasma exchange should the IVIG not help and doctor moves to PE. I was diagnosed in 1996 and have been through this a few times and won each appeal, so persistent. Good luck.September 21, 2017 at 11:19 am
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.September 20, 2017 at 2:34 pm
Like many, IVIG only provided short term benefit for me. As you will see, each case responds differently to the various treatments. I was on prednisone for several years, then IVIG, then plasma exchanges which proved most beneficial for me. My doctor has, over the years used a combination of treatments to keep the progression under control, so your doctor may have to look at this possibility for you should the IVIG not help. Hope you get the right combinationSeptember 20, 2017 at 2:24 pm
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.September 14, 2017 at 8:14 pm
cer100, My post under rituxin may answer some of your questions regarding plasma exchange. I’ve been doing PE since 1996 and have had over 400 exchanges, so I can probably answer about specifics I have experienced over the years. It has done very well for me over the years and I hope you have great success with it.September 14, 2017 at 8:02 pm
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 treatmentsSeptember 14, 2017 at 7:54 pm
Forgot to answer your time question. When I was doing PE with vein sticks it took about two hours if I was well hydrated and a little longer if not. With the Vortex Ports, then have to use CATH-FLO in the ports for about an hour before they can start the exchange, so the total time now takes about 3 1/2 to 4 hours.September 14, 2017 at 7:50 pm
Jim-LA and cer100
Sorry I dropped of the planet since my post in February. It has been a roller coaster ride since my visit to Vanderbilt University Neurology department. The Doctors conversation at Vandy to me was that I should have five consecutive day of plasma exchanges, then rituxin once weekly for four weeks, then monthly for six months, then once every six months if it helps. The doctor ran muscle and nerve conduction studies and confirmed the diagnosis of CIDP. She said I could have the treatment done here in Atlanta with my long time neuro, or I could come to Vanderbilt and she would over see the treatment. Financially, local was my first choice.
She conveyed her findings to my local doctor, who preceded to tell me all of the reasons it was to late to try Rituxin because of the long term progression of my disease and he did not think it would help. After three months of trying a combo of IVIG and plasma exchanges, during which the weakness continued to progress, he reluctantly agreed to start Rituxan. This was only after I presented him with two studies showing positive results. However, he only is dosing initally, then again in 14 days, today, then every six months. He says this is the rituxin protocol used for MS patients.Based on the information I can find, this is not sufficient to make any noticeable changes, and is not the protocol suggested by the neuro at Vanderbilt. I am looking for another neuro in the local area that has CIDP and GBS cases because of the expenses of having treatment out of state. But, if going to Nashville is what it takes, I’ll do it if my local doesn’t change his mind.
I have been on plasma exchanges off and on since 1996. I have had them daily, weekly, monthly and currently once every three weeks (somewhere around 400 treatments). The only time I was hospitalized was for the very first exchange. I have had up to five consecutive days as an out patient in the local hospital day surgery unit with no problems. Because my veins were getting a lot of scar tissue from the long term needle punctures, I had two Vortex Ports implanted several years ago and they work flawlessly.I am currently doing a three liter albumin exchange every three weeks, followed by 500 mg IV solumedrol (I was taking 1000, but reduced it). After the plasma exchanges, I get IVIG once a month for two months, then in the third month I get three days in a row of IVIG. The doctor has also added Rituxin. So, I am currently taking three treatment protocols at the same time. My experience with plasma exchanges has been good and over the years has always been my go to treatment when a flare begins. Best of luck to you. Feel free to ask more questions about PE if you have any.
Thanks again for your response and the information links. Scheduling the IVIG and Rituxin around the PE has been a challenge.February 24, 2017 at 9:14 pm
I missed your posts on anemia the other night , but have read the links proved and appreciate your reply.I am glad to hear you are seeing results beyond the projected 3 year mark. I am just over the 20 year mark and am optimistic the Retuxin will at least stop this latest activity of the disease. The neuro at Vanderbilt is asking my attending neuro here in Atlanta to do one infusion of retuxin, followed by a second infusion two weeks later, then once a month for six months. She also wants me to continue the plasma exchanges every three weeks with the 1,000 mg Iv solumedrol. If agreed to, this will be the most aggressive effort I have seen since the ’96 diagnosis. When I had GBS in ’85, I received no treatment other than PT, but back then there was not much to offer and I took what mother nature gave me. As time has passed and I see all of the new therapies that are here now, and in the hopper, I am always encouraged.
My Atlanta neruo did mention Ocrelizumab in his referral letter to the doctor at Vanderbilt, but told me that is not yet available, but does show promise in the near future. The Vanderbilt doctor also talked about some of the outstanding results they have had with new stem cell treatments. She has one such patient who was chair bound and is now walking, but added that this is a very difficult process and carried higher risks and is considered a last resort option. I’m not there yet.
I wish I had inquired and visited this center of excellence much sooner as I now have an option that was not offered to me prior to the Vandy visit.
Thanks for you response and I hope you continue to see more wiggle in those toes, regard,
FredDecember 8, 2014 at 11:46 am
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.December 8, 2014 at 11:41 am
I don’t monitor this site very often, but saw your post today. I had GBS in 1985 and CIDP dx in 1996. Have been seeing Dr. William Stuart at the MS Center of Atlanta since 1996. He has kept my condition pretty stable over the years using a variety of different treatment protocols. Do not think he is taking new patients, however his son, Doug Stuart is. They are located on Downwood Circle in Atlanta, just off I-75 at Northside Drive. If you have not found a neuro that you are comfortable with, you may want to look into this practice. Hope you find the right doctor and treatment.March 6, 2014 at 4:49 pm
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.January 30, 2013 at 7:36 pm
Have your tried Gamunex brand IVIG? It is processed differently than other brands and is reported to have fewer side effects. I took this brand for about a year at a 250 rate with no side effects. Only one benadryl tab and two extra strength tylenol as premed. My experience is exact opposite of AllyinCali’s. As with most all CIDP treatments, each person reacts and responds differently. Just have to keep after it until you hit on the combination that works best for you. Good luck.January 30, 2013 at 6:38 am
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.