In my case, I started a high dose of 70 mg/day in mid November. I saw immediate improvement in strength in my legs and it jumpstarted my walking. I began slow tapering doses after a month or two. I’ve experienced weight gain, bloating in my stomach area, swelling feet when I’m vertical, the round face, acne, and insomnia. I gladly take the side effects to be able to walk again! We’re continuing the slow taper to get to a point where the CIDP is controlled, but no side effects occur.

Hi Lori,

Have you looked into other possible treatments such as plasmapheresis? It’s a little more invasive than IVIG (requires placement of a Quinton catheter), but I’ve heard success stories with such treatment when IVIG fails. As you already mentioned, we all travel a separate path. When I first showed symptoms in early February of this year, the doctors decided IVIG was the first course of action. It did nothing for me and I declined further. A couple of weeks later, they tried plasmapheresis with little improvement. That kind of defeated the whole purpose of IVIG since it was inevitably filtered out of my system. With IVIG, sometimes people don’t report immediate results. It may take some time to become effective. I ended up on a ventilator in early March and the disorder eventually plateaued. During my recovery process while on the ventilator I received a handful more rounds of IVIG treatment with no results. I was also put on Prednisone for some time. Still, no results. I eventually stopped Prednisone after a while and slowly started regaining movement in my upper body. When I had a mini relapse in late July, I started IVIG again and saw immediate improvement within a matter of days. Since then, I’ve been receiving monthly treatments and have seen huge improvements each time. I’m hopeful and confident that I’ll walk again. Speak with your neurologist to consider alternative treatments. Be very vocal and advocate for yourself. Don’t lose hope! We’re all here rooting for you! I hope you find something that works for you. Keep us updated!

I received PE early on and it did nothing for me. I had a mini relapse several months after starting to recover due to an infection I contracted whilst at the nursing home and received a round of IVIG with an aggressive antibiotic regimen through IV. I showed signs of improvement quickly thereafter so I don’t know which worked. In any case, I’m due for another round of IVIG treatment next week, but also talked to my doctor about considering PE again. I did get another infection recently, but didn’t relapse this time so maybe the IVIG did help after all. Thanks for your input, Jim.

Hi Vicky, I do recall that I had a sensitivity to light and sound during my progression with GBS. I had to have three different signs up reminding all caretakers to use indoor voices or whisper because it was too painful to my ears. At one point I experienced a ringing in the ear along with sensitivity to volume. It gradually subsided end went away on its own maybe 4-5 months after the onset of GBS. Hope this helps. Wishing you all the best!

Jamie.dinh618@gmail.com

Hi, I’m Jamie. I’m currently in my 5th month with GBS and only started to regain movement in my hands a few weeks ago. Every case is so different so it’s difficult to put a timeframe on it. I’m 28 years old. Just make sure to help him with passive moveMemes to keeps his joints loose and prevent muscle contractures. They’ve tried electronic stimulation on my quads and calves without any improvement yet. It just takes time for the nerves to regenerate. I’m definitely improving and getting stronger every day. Make sure he tries to exercise anything he can by moving. Even if he can’t physically move his extremities, it helps keep engaging the mind by thinking about movements. Does he get PT and OT?