Good CIDP treatment Questions

May 21, 2010 at 8:43 am


I agree with what homeagain wrote. Maybe you’ve had your treatments by now. But, the next new person hasn’t. I’m sure there are ‘new’ members constantly joining who are facing the issues you describe.

I also had to make the decision to IVIG or not without a cast in stone diagnosis. As for the side effects, well, driving your car has side effects too. But, we all keep driving. homeagain nails it on the head with his advice to learn all you can about infusions, rates, and pre-treating with benadryl, tylenol and lots of water.

I had 5 days IVIG in the hospital. The hospital pharmacy kept the infusion rate very low because I had a minor allergic reaction which was facial flushing and a ‘funny’ feeling in my throat.

The first week following that infusion my hand grip strength dramatically improved on both sides. This was documented by the p/t-o/t the doctor sent me to. Unfortunately, the improvement faded over the next several months.

For me, the decision is a simple one. Try the IVIG because it is proven to work. The bigger concern you need to have, based on my experience, is the competence, or incompetence of the nurse who comes to your house. I’ve had multiple treatments at home. Some nurse’s couldn’t stick an IV if they had to. Others have no clue about drip rates, or how to calculate the drip rate based on the needle and tubing size. Worse yet , when using a dial a flow meter, the IVIG fluid is too thick so it makes the dial a flow metering numbers useless.

I’m on Medicare. Medicare will not pay for IVIG at home. Further, you must be considered home bound. Apparently, if you are home bound you cannot be home bound and attend physical therapy regularly. This happened to me.

After the home bound issue caused my home care provider to drop me I started receiving the IV at the local Cancer Oncology treatment center. Guess what? Medicare will pay for that. Go figure.