rcatffire,
How long have you had your gortex graph? This is another area I am finding my doctor is apparantely not up to speed. He told me this type graph would not work long term for PP as they tend to clot. Have you had any such problems? Can they not do PP and IVIG through the port or the graph? Would like to know why you need both. What type port do you have?
I really want to be up to speed when I see my neuro next month. As much as I like him, and he’s been on top of things most of the past 12 years, the fact that he did not know anything about Gamunex, the ports and some question about his understanding of the gortex, I am beginning to wonder if his concentration on MS is bypassing my CIDP. Thanks for your input.
Fred

Lesa,
How long did you have your first port and why did you have it replaced?
Fred

Hi Brianh,
I have progessive CIDP, diagnosed in 1996. Since then I have been on various treatments starting with IVIG, then oral steroids, cellcept, imuran, cyclorsporn(sp?), Rituxan, cytoxin, five different MS drugs and PP with IV metheylprednisone. Have also been on high pulse doses of IV prednisone.

Single medication treatment protocals never worked for me. PP and IV solumedro combination worked best for me the past several years and slowed the progression to a crawl, but about six months ago I again begain to decline in mobility, strength, balance, etc. so I needed a change. Fortunately, in September 2008 our FDA approved a new IVIG product specifically for CIDP, GAMUNEX. The mfg process differs from other IVIG products in that it uses Glycene, a natural imino acid in the processing rather than sucrose, a sugar.
Early studies are showing Gamunex to have better and longer response than other IVIG products.

I switched to a new combination of treatments in December and am, for the first time in eight months, seeing improvement in strength, mobility, endurance and dexterity. I am doing PP and IV soplumedrol on Thursday, then Gamunex on Friday, every third week. I began seeing improvement after the third treatment. The doctor had to specify brand specific for the Gamunex. It is my understanding that Gamunex is the only IVIG product speciffically approved for treating CIDP here in the US. My Gamunex loading dose was 200 grams and the maintenance doses are 100 grams. My PP is a three liter albumin exchange followed immediately with 500 mg IV Solumedrol. I am beginning to get some nerve regeneration in my legs after almost 12 years, which the neuro said is possible. Reflexes that I haven’t seen in years. New medication, new hope.

As many have posted, we all respond differently to the various medications or combinations, so what works for one may not work for another. For me, it has always been a combination that has produced positive results and treatment has been ongoing for over 12 years. Without it I would not be functional. If a case is progressive CIDP, ongoing therapy appears to be a must if the disease is to be slowed or arrested. Response to a treatment may take weeks or months, so don’t give up on anything too quickly.

Regarding your question does treatment do any good, I was told that I would be chair bound within weeks six years ago. With the persistant and ongoing treatments, I am again able to work on my hobby of restoring antique cars, can now walk on level surfaces without a cane, my balance is much improved and I can walk longer distances without fatigue. So don’t give up and stay persistant with your doctors about the various treatments available until you find the combination that works for you. Hang in there and stay positive.
Fred

Dawn Kevies Mom,

I went to see Dr. Farouk Khan, head of neurology at Freeport Memorial Hospital in Freport IL. My son knows Dr. Kahn and when the Foundation sent the letter announcing the approval of Gamunex for CIDP, I asked my son to to see if Dr. Khan knew anything about the drug, as my longtime neuro knew nothing about it and brushed it off stating that all IVIG products are the same.
Not so said Dr. Khan, as for the FDA to approve a drug Brand specific for a specific disease, the drug must have unique charastics. Gamunex is processed with Glycene, an natural amion acid, whereas other IVIG products are processed with sucrose. He says this process lessens potential side effects and is showing better results in CIDP.
After my son told D. Khan about my long battle with CIDP, he agreed to see me while I was in Chicago for the symposium. He examined me and found reflexes that I haven’t seen in years and felt Gamunex may help me. He gave me a suggested treatment plan and told me how to talk to my neuro to get him to go along with the plan.
I finally got my local doctor to authorize Gamunex in late December. I now get PE and IV solumedrol the day prior to Gamunex. Currently on an every three week schedule. I have seen definite improvement in motor skills, balance , strength and endurance after only four infusions. I can now walk without a cane on level surfaces and the hip waddle I had in nearly gone, so it is definitely helping me.
Dr. Khan and I e-mail every 3-4 weeks so he can follow my progress and he keeps me posted on the Gamunex studies he is following. He say the results thus far are showing Gamunex is producing better and longer lasting results when compared to other IVIG products. Over the years I had been on IVIG multiple times with varying dosages, but it never helped. So far Gamunex is showing results for me.
There were some minor side effects with the loading dose and the first maintenance dose. Body rash and itching, and a runny nose for a few days. We slowed the infusion rate to 250 on the last two maintenance doses and there have been no side effects. The initial side effects were stopped right away with 20 mg of oral prednisone for 2-3 days.
Gamunex is manufactured by Talecris Biotherapeutics located in NC. Goolge the name and their web site will give you a lot of information. The doctor must prescribe Brand Only Required or you will get the other IVIG product. Gamunex is used to improve neuromuscular disability and impairment and as a maintenance therapy to prevent relapses.
Sorry this is so long, but I hope it helps. Good luck. Let me know if I can answer any more questions about my Gamunex experience, as I know we all respond differently to the various treatments. I can tell you that this is the most exciting and upbeat therapy I have had in years, and the most hope for something to stop the progression.
Fred

Jojo,
Dx with GBS in 1985 and took about 18 months to get back to normal (my doctor at the time said there was no treatment available, so mother nature did it all).
Then in summer of 1996 began losing my balance and was finally Dx’d with CIDP in December of ’96. Sural nerve biopsy and EMG. First line of treatment was IVIG, then oral prednisone and plasma exchange. My CIDP is relapsing/progressive and over the years they have tried many treatments. PE and IV prednisone have worked the best for me, but past 6 months have been on a slow decline in strenght and mobility, so we (I) opted to try Gamunex IVIG since it is processed with glycene rather than sucrose.
My neuro said that we had already tried IVIG without success, all IVIG products are the same, and did not want to try Gamunex. I had to explain the difference and show him the studies before he would prescribe. Started it in late December with 200 gram loading dose and 100 gram maintainance dose every three weeks the day after PE. I now have PE and 500 mg IV solumedrol every third Thursday and Gamunex the following day. Have seen positive results and it now appears that I am having some nerve regeneration.
I got a second neuro opinion in November from a doctor in IL who has been following several small clinical studies on Gamunex vs other IVIG products and he says the early results show better response to Gamunex. He encouraged me to work with my local doctor to get it started.
May be wishful thinking on my part, but I know that I am stonger, have better balance and much more stamina than I had three months ago.
Lots of good information on this site, but as most say, the disease affects each of us differently and we tend to respond to the various treatments differently. Do your research and talk to your doctor. If one treatment isn’t helping, ask to try something else. Keep your spirits up and stay after it.
Fred

Hello all. It’s been a while since I have posted, but I try to keep up with what’s going on with everyone.
What type of “port” is everyone refering to? I had four failed central lines and my neuro says I don’t have any other options. I am beginning to wonder if he is on top of what’s out there. I am now getting plasma exchanges every three weeks, then 100 grams of Gamunex the following day. The Gamunex is starting to scar my veins pretty bad and they are running out of places to put the needles.
With the success you all are talking about with the ports, it sure would be nice to explore this possiblity. Any feedback is appreciated. Thanks,
Fred

Brenda,
If they won’t give you IVIG, do they provide plasma exchange? This is often a good second choice if IVIG is not available or is not authorized. It was a big help for me when IVIG did not work. I was on oral prednisone for a little over two years without complications (other than a 40 pound weight gain). They did liver and kidney function blood work every 3 months to stay ahead of any serious side effects. Good luck to you.
Fred

Christie,
You need to call the doctor that treated your GBS before. Make sure the office staff knows you are a patient, and that you have all of the symptoms of a relapse, and you need to see the doctor today on an emergency basis. The sooner the better. Don’t let them put you off. Good luck.
Fred