Post IVIG loading dose- Work, PT/OT, Driving

General General CIDP Discussion
1

Last Friday, I completed my loading dose and saw some improvement. Good News.

I still have no reflexes, can’t manage stairs, buttons, but put aside the walker that I had just started using.

I’m just wondering (realizing everybody’s different)…

  • If working, did you have to take time off during the onset/initial treatment until you stabilized? If so, how long were you out?
  • Was your driving ability stopped and if so, when were you able to resume (months/ treatments)?
    • My plan is to use the return of my reflexes as a primary marker:
  • Did any of you start OT PT right after a loading dose? Or other initial treatment?

I had my safety and PT assessment yesterday; OT may be a week or so. A few simple knee, toe lifts and squat reps hit me hard. I feel like I did pilates for the first time in ages.

I was lucky to gain a diagnosis within a few months of onset, but it seems to have progressed fast.

As far as the Ivig loading dose: Day 3, I was able again to walk short distances in my home unassisted and noticed my cold hand symptoms come and go (vs being constantly freezing). It’s almost as if it took me back a few weeks. Day 3, I woke up feeling like a paraffin wax treatment was breaking up on my hands and my feet. It was a beanbag type feeling. Before, I could feel outside stimuli, but it was had a thick extra layer sensation (stocking glove).

I had minimal side effects from Ivig with the exception of a slightly elevated temperature and the headaches by day three, despite Tylenol and hydration. The Benadryl seemed to help more than Tylenol for head. It’s been five days since I completed my dose. I don’t have any more headaches, but am pretty fatigued.

2

Thanks Dazed and Confused.

I am taking some time off work to heal and go through my apts etc, by recommendation of my company, who has been more than supportive, and my dr, who wants me to rest. My job involves an 1.5 hour drive back and forth to office, some travel, and a lot of keying. Fortunately, some of the work can be done remote which is what I did the last month and half. I'm just very fatigued and can't produce like I did. Hopefully, I find myself in a better place through recovery and introduction of moderate exercise. I may need to increase my normal 1 day a week remote, if possible.

I'm not driving, but my neurologist suggested I don't use the return of reflexes as a marker (as I suggested), but rather my endurance as my nerves heal to handle repetition and of course, I take the return in slow steps/distances. Right now, even 1 set of knee lifts, squats, and heal lifts is hard on me (fatigued). This is my PT regimine. I'm going to try to build up to some form of swimming. We had just joined this athletic club a few miles from me before my symptoms started; they have a great pool,

My dr. thinks I have some autonomic damage, but wants to wait until I finish a few more rounds IVIG and come back for check in/ possible testing. The reason being is my diagnostic EMG showed no axonal damage; she thinks I made great progress within the first few weeks post-loading dose in recovery. She is hopeful in my response time. She believes this may heal overtime with treatment (IVIG). I need to better understand the possibility without separate intervention. The Cleveland Clinic, which she is part of, is one of the testing sites you shared with me (thank you). So, I will do inventory on these symptoms before my April visit.

I had motion sickness in route home (3 hour drive), but didn't have it going there. I sat in backseat going home, being tired, which was the difference. I also have had some chest tightness (very rarely with this), but my hands being frequently cold/stiff or inflamed/sometimes sweating, and my increased weakening with warm showers are my biggest symptoms.

I guess I need to just wait and see how this unfolds.

I really appreciate the feedback.