I’m on Privigen, 3 days every 4 weeks. Next week will be my 4th round of infusions. My neurologist has been stepping down my dosage of Prednisone since starting IVIG to where I’m now down to 20mg/day.

Since starting IVIG, I’ve notice some slow improvement in some areas while others feel worse. I’m regaining sensations in my feet and ankles, but as my steroids have reduced, I’m starting to feel itching again in my hips, thighs and back. The very symptoms that sent me to seek medical help in the first place. I have not noticed the drastic and immediate changes others have described. Regardles, I’m still experiencing a lot of problems with dexterity.

I flushed the Gabapentin months ago after I was diagnosed and put on Prednisone. It made me feel awful.

As far as side effects from IVIG, I’ve had none other than a very slight fever. I’m supposed to be taking Tylenol and Benadryl before the infusions but I often forget because I never quite know when to expect the nurse.

Is it the CIDP causing or the steroids being used to treat the CIDP?

It’s good to see a somewhat positive story for a change. The stories do vary wildly from what I’ve been reading. It does seem to help greatly to get a proper diagnosis early on before the damage is too far gone.

Currently on 30mg of Prednisone daily, plus 30g x 3 Privigen every 4 weeks. So far after 2 rounds of IVIG, I’ve only noticed minimal improvement but a little is better than none. Ready to start the third round next week. I have been experiencing a lot of fatigue lately though, to the point I sometimes take a couple naps during the day. I’d like to get over it and start working out at least a little to regain some strength.

I brought up Cellcept to my neurologist and she wasn’t fond of the idea. She claims to have patients on it but for some reason prefers to push IVIG. Currently I’m on 30g x 3 of Privigen every 4 weeks, plus 30mg of Prednisone daily. Due to the shortage, I’ve only just began IVIG in December so only 2 rounds so far. As I mentioned already, I’ve only noticed minimal improvement.

It did take months before the doctors could figure out what my problem was and get a diagnosis. I’m sure a lot of damage has been done though I’ve never reached the point where I couldn’t walk or drive when I have to. At worst, I’ve only experience a bit of wobble in my legs during the early morning before taking my steroids.

At this point, I’m not looking forward to the huge inconvenience of 3 days of IVIG every month. I’m hoping to find a trial somewhere for stem cell therapy.

Initially before sending me a neurologist, the doctors were saying my problem was spinal because the MRI revealed a compression fracture and stenosis (L5/S1). I was sent to physical therapy but it didn’t help much. Eventually I was sent for a nerve conduction test which indicated demyelination, then later a spinal tap that confirmed CIDP.

I started IVIG in December. I have noticed a small improvement, but nothing that gets my hopes up.

FWIW: During my whole ordeal, I was online searching for *anything* I could find that might help. Eventually I ran across CIDP which described the condition perfectly. I contacted my doctor and he pushed to get me into the neurologist quickly rather than waiting several months. If I had to wait those few months, I may have deteriorated to the point of not being able to walk.

I know one a couple hours away (Oak Ridge, TN). Apparently neurologists are in short supply so hard to get into around here so don’t be surprised if there’s a long wait. I only got in because my PCP pushed hard to get me in earlier. I’m glad he did so I could be treated before too much damage was done.

So I finally started my Privigen infusions after months of waiting. I’ve had 3 days so far, leaving 2 more. It’s been taking a little over 2 hours per infusion.

No real side effects except being drowsy from the Diphenhydramine. I always make sure I stay well hydrated.

It’s difficult to tell at this point but I do seem to be getting some feeling back in my lower legs and feet.

I haven’t lost any strength, just loss of sensations and dexterity.

When I started Prednisone, it was only a couple days before I noticed a huge difference and was finally able to sleep at night. Before I had a burning sensation that was so bad I could hardly come in contact with anything and not feel pain. Gabapentin helped some, but it made me feel awful so I quit it after going on the steroids. So far the twitches and tremors have been getting better until recently. I don’t seem to be getting any worse, just no longer getting better.

I too have mentioned things to my neurologist. She seems to be a huge fan of IVIG, and shoots down the other options I’ve been reading about likes stem cell or Cellcept.

You are right to be impatient. This is something that needs to be addressed quickly before it causes more damage.

This has destroyed me. I lost my job/income. Most of the things I once enjoyed, I can no longer do. About the only thing I have left is shooting pool which I do not so much because I want to, but to get out of the house but it’s turned out to be some of the best therapy for me too. Being on my feet for a few hours helps the condition, and helps keep my glucose down. Even so it’s something I can only really do maybe once a week.