Patient stories

I was diagnosed about 1.5 years ago with CIDP. It was a long process… since then i have had problems with my legs feeling tired and weak and my hands and arms feeling the same. They vibrate internally and will shake externally too. Drives me crazy. I started IVIG last week and i feel like the shaking is worse not better. Did anyone else have that? Do you have any memory loss?

Hi there. I have been looking all over this site for someone like me and it’s quite clear we may all suffer from the same disease but all travel a separate path. I was diagnosed with GBS last February but when my symptoms did not improve I was diagnosed with CIDP in June starting IVIG tx every other week since the start of August. I am struggling to find signs of improvement and mortified to continue to see signs of decline present as well as new problems arise. I am also on prednisone 30mg daily. Starting solumedrol 250mg as premeds along with Tylenol and benadryl for this weeks infusion. I follow up with my neurologist at U of M in early December.

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!

Jamierez68- thank you for sharing your story. I am almost 12 months into dealing with progressive axonal polyneuropathy that three neurologists tell me is untreatable because my spinal fluid and nerve biopsy are normal. I did receive one IVIG treatment that did not seem to “work”. Did you have a confirmed auto immune condition?

Thank you again!

rec60661, You may wish to look into Rituxamab treatments with your team. This has had some successes with axonal forms of CIDP. Here is a good article about it:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4561230

This article reviews other treatment options:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635

There are many forum threads here that address Rituxan as well. Here is one I was involved in recently:
https://forum.gbs-cidp.org/topic/rituximab

Hope this info helps.

Thank you, Jim-LA. I’ll follow the links. I think we need to decide whether to try 2 more IVIG treatments or go to something else. Will study-up on Rituximab. I hope you’re improving … Universe owes you big-time for all the good you do on this site.