midilance
Your Replies
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December 29, 2017 at 12:08 pm
My first CIDP doctor, Dr. King Engel, firmly believed that the infusion rate needs to be slow for optimum results. Also, if you are experiencing headaches you might try going more slowly.
May 26, 2017 at 8:08 pmThat’s the $64,000 question. I am facing the same problem.
May 11, 2017 at 8:37 pmI agree with Liam. If you have the great doctor do what/when he/she says to. I’ve got a great doctor here in L.A. and her word is gold.
April 25, 2017 at 8:18 pmI am on my second port. The first one got infected and I went septic. 911. Emergency room. In the hospital for five days. Almost died. Even after that, having a port is such a convenience I had mine replaced. I now know how it feels when it gets infected and will know to get to the emergency room in a hurry. I am on my second port and all is well so far.
April 13, 2017 at 10:05 pmMy first guess is that the infusion rate is too fast. I get 30g, 300mL which takes 4 hours, Two consecutive days a week for two weeks. One week off then repeat. At first I got it three consecutive days a week but we have been able to get it down to 2 days a week.
My first CIDP doctor, Dr. King Engel (Google him) is an internationally respected doctor for neuromuscular diseases believes that slower transfusions, which tend to prevent headaches, also are more effective in treating the disease.
I can say that, in 9 years of treatment so far I have never had a headache. Plus, we have been successful in preventing things from getting worse.
Tell them to slow it down.April 13, 2017 at 9:56 pmGoogle CIDP where you will find a lot of articles explaining CIDP. Show her the articles. If she won’t read them, read them to her. Also, you could take her to your doctor for explanation.
March 22, 2017 at 8:25 pmHi Jim. I have always felt fortunate to have been Dr. Engel’s patient. That feeling has continued with Dr. Mahajan. I was diagnosed in early 2008 and have been on IVIG ever since. My CIDP problems are minimal compared to many others’. It took out partial use of my left hand. Fortunately, I have had no pain.
March 22, 2017 at 1:29 amHi Jim, I’m in L.A. too. My doctor is Shalini Mahajan. She took over Dr. King Engel’s practice after he retired. I can tell you that one of the things that Dr. King Engel and Dr. Mahajan have told me is to NOT do intense exercise. It appears that you are finding that out. Don’t overstrain your muscles. Now, I only use 10-15 pound dumbbells instead of much more. Not too many reps. Not to failure. The one thing you don’t want to do is to overdo anything.
Just my understanding.
January 23, 2017 at 3:00 pmBryan, where do you live?
August 2, 2016 at 4:07 pmMy fatigue tends to be constant although not debilitating. I just work through it. It is one of the symptoms of CIDP and IVIG.
August 2, 2016 at 4:00 pmI’ve had CIDP since 2007 and have been on a regimen of three four-hour infusions a week for two weeks with one week off. Then repeat. Yes, I have fatigue. I could go to sleep at any time. I’m just used to it now. However, exercise really helps. I find that if I go to the gym regularly and just ride the bike for 30 minutes each time my energy builds. You might want to try it.
May 16, 2016 at 5:57 pmWhat was your dosage of IVIG, and how often? Also, what brand?
February 26, 2016 at 2:05 pmTime to go back to your doctor and see if he has any other ideas.
February 25, 2016 at 8:30 pmFatigue and lack of energy just happen. I just deal with it and fight it all I can. This is something you should talk with your doctor about. Hopefully, he/she has a good background with CIDP. One of the things I have had to do without is caffeine so there’s no hope there.
Where do you live? Is your doctor up to date on CIDP. Also, I hear that it’s different for everybody.
February 21, 2016 at 10:09 amIn my case, my doctor believes that the infusion rate should be slow. I start at 35 and after 15 minutes go up to 75 for the remainder. This takes about four hours. His reasons are that a slower infusion rate helps to insure there is no bad reaction (there haven’t been any problems) and that it is better for IVig to go in slower to have a better result.
