I’ve been on IVIG for about 14 months now. I was doing pretty good until about two weeks ago. Numbness started to creep back into the finger tips, then from the elbows done some more numbness. Then my feet became more numb and of course numbness worked its way up to my knees. (My feet have never fully recovered. The balls forward have remained numb through the process and the nerves burn throughout my entire feet).

My grip on finer things was off and I started to trip over things and balance was just a bit off.

Since I was already on IVIG, my doc raised my prednisone up to 60mg for this week and then 50mg the next and so on to see if it helps.

I only started the high dose prednisone yesterday, so I can’t really say if it helping. I have another round of IVIG on this upcoming Wednesday, so hopefully the one-two punch of prednisone and immunoglobulin will get rid of this flair up.

That’s the problem with this disease, it is chronic. I think we will always have flair ups and have to hit the IVIG bottle periodically.

When I was diagnosed, I declined rapidly over the span of a month. I could barely walk, my feet and legs up to my knees were numb and my arms and hands were numb, weak….

Also, motor control rapidly declined as well.

At the time, I don’t remember pain, but just the weakness and numbness and the loss of motor control.

Hopefully you get treated soon. The initial dose of IVIg was like a godsend for me. Hope your treatment helps you as well.

Regarding alcohol, I have a link from the Scottish NHS, somewhere, where they address alcohol consumption and CIDP. Basically, they said, since CIDP already affects your balance, excessive drinking will make that worse : ). Moderate alcohol consumption, they went on to say, was just fine.

My original doctor started my on 80mg of prednisone in December of 2017. It really never helped me and I sought a second opinion in late March of 2017. My current doctor started me on regular doses of IVIG in April of 2017 and he also started tapering the steroid doses. Happily, next week will be my last week on Prednisone!!!!! Hopefully then I can get rid of my fat face and belly.

As a precaution, once I’m off steroids, he said he will continue the IVIG treatments as is to make sure the CIDP stays in check in the absence of prednisone.

Overall, my arms and hands seem to have healed rather well. I still have some residual weakness in my calves, and my feet at the end of the day hurt with the added bonus of numb toes.

At this point, I think the numbness in the toes and foot pain is here to stay. The other issue I have is fatigue. I built myself up to handling 8, even ten hours at work, but after that I am worn out. I often go to bed to at 7:30 or 8 and get up at 5:30am. I find 10 hours of sleep allows my body to recuperate to an extent.

But, at the end of the work week, my day off is a lost cause, as I need to rest and rebuild my strength.

This is the damnedest malady I’ve ever had. I’m grateful that I progressed from not being able to walk to now resuming a 50 hour work week and being able to meet the physical needs of the job once again.

I think, though, I will have to come to grips with my foot pain and fatigue as the long term effects of CIDP that just will not go away.

Typically, my IVIg treatments wipe me out for a day or two. By wipe out, I mean a general tiredness and sometimes a bit a weakness in my legs. Generally, a couple days later, I get a nice boost.

Slower infusion rates and plenty of water do help.

I don’t get those symptoms, but my CIDP seemed to hit my right side a bit more than the left. A year after, my right ankle still feels weak and my left is just fine.

As far as hitting your hands and forearms, that is part of the glove and sock effect. Time to see your doctor.