Erin,

Realizing everyone responds a little differently to the various brands of IVIG, the amount of time they are taking to infuse 45 grams seems to be extremely slow. Is your doctor giving you pre-meds to offset potential reactions? I have been getting 100 grams (Gamunex) every three weeks for the past 15 months and they infuse it at a 250 rate which gets a 20 gram bottle done in 45 minutes, so my total time in the op center is only about 4 1/2 hours. I get 1 benadryl tablet, 2 tylanol and 125mg iv prednisone 30 minutes prior to the start of the infusons. Only reaction I get is a slight facial rash and some itching about a week after infusion, but take oral prednisone for 2-4 days and that goes away.
Talk to your doctor about pre-meds if you are not getting any, and if so, ask him if they can increase the rate, and if not, ask him about taking the dose over two days. It can be frustrating, but stay after them. Good luck.

Oh, one other thing. You can talk to your doctor about brands of IVIG. All brands except Gamunex are processed with glucose, while Gamunex is processed with amino acids. Clinical studies have shown some patients have fewer reactions to Gamunex and have longer lasting benifits. When I started my IVIG, the hospital pharmacy stocked another brand processed with glucose so my doctor stated “brand specific” and the hospital orders it in for me based on physician orders. Gamunex was FDA approved for CIDP in September 2008, so your medicade should allow it.

hopalong,
I posted back to you on my thread earlier, but wanted you to keep after this thing. Over the years (since 1996) I have tried everything anyone has posted about and think the key to my ability to remain functional has been the willingness on my doc to try different medications, protocols and combinations of things. My best success has been PE with 500 mg iv solumedrol. Time frames have varied over the years from daily, to weekly, monthly, sometimes as long a six months between exchanges. Considering the significant muscle loss I had sustained over the years, I have been fortunate to lead a semi normal life.
A year and a half ago I was in a quick decline and was preping for a chair, but then saw the FDA approval on the new IVIG, Gamunex, which is processed with glycene rather than glucose. The clinical information seemed to indicate better results than traditional IVIG products, so I convinced my doc to try it in combination with PE and solumedrol ( I did not respond to other IVIG products in the past). This combination has kept me out of the chair, and actually helped me get stronger. This side effects from the last infusion is a bit discouraging, but then when you look back over the years, there have been a lot of discouraging times, but something different always seems to pop up and we get a new lease on things. With GBS in ’85 and the total imobility, I know all to well where the bottom really is, so word of.
encouragement, never ever give up or lose hope.
If you are not doing so, I strongly suggest you keep a diary of what happens and your reactions to various treatments, time sequences, ect. I have kept a diary since 96 when this all started and am able to discuss things with my doctor from a specific reference point which eliminates some of the guess work. Good luck to you and keep after it.

Hi Tim,

Just curoius about the Gamunex. Did you use other IVIG products prior to Gamunex and were they as effective? I had been on other IVIG products off on on over the years (dx in 1996) but they never helped. I switched to Gamunex in December because it is processed diferently, and have seen improvement. IV solumedrol every three weeks keeps my pain under control much of the time. Low back, knees and feet are my problem areas.
I’m getting 100 grams of Gamunex every three weeks the day after plasma exchange. Also take 200 mg of Cellcept daily.
Sure is interesting how much treatments vary.
Fred

Hi Jet,
I have been on and off prednisone for the past 13 years with good and not so good results. Oral prednisone tends to cause significant weight gains and if taken daily over extended periods of time can cause kidney damage. I was on 60 mg a day for over a year at one time. Pulse doses (every other day) tend to lower the risks of the drug. I also tried the chemos, IVIG, imunosupressants, IV Solumedrol pulse doses and PE over the years. PE with a 500mg IV of solumedrol varying from weekly to monthly slowed the progression somewhat, but never really stopped it.
In December of 08, I was ready to start using a wheel chair, could hardly stand because of weakness and my balance was so bad I used a scooter when I went out, which was seldom.

When the foundation sent out the notice that Gamunex had been approved for CIDP, I talked my neuro into letting me try it even though prior IVIG teatments were ineffective. He agreed to a rather aggressive new treatment plan which calls for PE every three weeks, followed by the 500mg IV of solumedrol, then the following day, I get 200mg of Gamunex (brand specific). Gamunex is processed using glucene, an amino acid, where as all of the other IVIG products a processed using gulcose. I get pretty hiper for about two days after the solumedrol, but after that I get back to normal, whatever that means. It took three months to get my insurance company to approve the new treatment protocal and I started my first Gamunex on Christmas eve and finished at 3:00 A.M. Christmas morning.

Now, just eight months later my doctors says the progression of my CIDP has stopped for the first time since diagnosed (1996) and , thought he cannot explain why after all of this time, there is some nerve regeneration and I can do physical activities that I have not been able to do in years, I seldom use my scooter when I go out, walk almost normally again and can drive for extended periods of time. I still take my cane with me as my balance is not back a 100% yet, but I’m getting close. Any sleep difficulties from the steriods is controlled with a small dose (.025mg) of Halcion, an older generation drug. I also keep some Xanax on hand in case of a panic or anxioty attack.
Sorry to ramble, but my point is that there is hope and sometimes it may take more than one treatment to put the disease in check. We all respond differently to the various medications, but the key to beating this thing is being aggressive with treatments until you find the one, or combination that works for you.
I don’t post often, but read the posts often. I notice that most CIDP’ers are being treated with one protocal at a time, which works for some and not for others. For me that never worked, but this new three pronged approach has been the “silver bullet” I have been searching for since ’96 and has been a real game changer for us. My wife and I just got back from a 2600 mile road trip through the upper midwest, then two weeks later went to the coast for the weekend and next week are headed to the northeast to visit family and friends. All things I could not do just a few months ago.
Christmas Miracles do happen! Just something for consideration. Best to all, and never,ever give up.
Fred