CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Follow up to my above post. IVIG may be having more impact than I thought. I just noticed that my right wrist doesn't hurt when I push up off the couch. This may seem small, but getting up from a couch or chair was difficult and very painful. Before my diagnosis, one doctor was ready to do wrist surgery because the myelin sheath was so shredded. This was of course part of the CIDP effect, but we didn't realize it at the time. I guess myelin can repair itself over time as there is no other explanation. I wonder if others having positive impact stop posting and move on as things improve? Anyway I thought I'd share some good news. Hoping this lasts and continues to improve.

I was diagnosed in 2014 with CIDP and started infusions every 2 weeks. I maintained that schedule for 10 years, using Lyrica and Cymbalta to manage pain. I had progressed so well I asked my neurologist about switching to SCig. She suggested that I was doing so well perhaps we should just stop the IVig and see what happens. I have been off treatment for 13 months now, still taking Lyrica and Cymbalta but it appears I am in remission. I keep a close eye out for any symptoms of it recurring, but I am hopeful!

Many thanks for that encouraging news and congratulations!

I have just started to get a vitamin and lidocaine IV and it helps with the nerve burn and pain. It lasts for about 10 days. I get them every 2 weeks. It is worth trying. I now have scheduled it every 10 days and will post an update in a couple weeks.

I don't know if this is relevant to this Support Group, but I have been diagnosed with MMN. I will be starting a 6 month course of IVIg. My research has said that, if the IVIg doesn't work, I may have ALS. I have foot drop and lots of neuropathy pain in this foot. I have been through many MRIs, EMG, NCS, and lab tests. Abnormal results are EMG, NCS, and anti-gangloside antibodies. Right now, Mayo Clinic has me in a "wait and see" mode and will be interested in seeing if the IVIg relieves my symptoms.

@itsmeagain
Yes for 3 years. Two days every four weeks. It’s helped but now I’m at a plateau.
I’m going to start therapy again (practicing walking).
Nothing else has helped so far but I’m 82 and spend my time between bed and wheelchair.
I think it’s worth a try.

I will join the discussion only in that I have CIDP and am helped a great deal by IVIG infusions. I get weekly 1/2 dose infusions 1 day, and they keep me able to walk with a walker around my home. Started out at 3 week intervals but had to get a more often. I take 400 mg gabapentin at night. Also on high prednisone, methotrexate which I think helps. No neuropathy pain just numbness and weakness. Lucky for me the pain is not part of my CIDP. I have enough of that from neck and lumbar disc disease/ fused cervical and lumbar spine.
I will look into the ketamin and other options for pain. So far percocet is my relief but of course frowned upon even though I don’t show any signs of addiction. It seems everyone is struggling to find help and relief and keep walking. The weakness in my legs, hands is the biggest problem. I’m sorry for everyone who is suffering! No way to live and enjoy life! Mental health support is critical for us all!

Glad to hear that many sufferers of CIDP do not have pain, just numbness and tingling. In that regard, I have near-crippling pain but not diagnosed with CIDP. I would trade excruciating pain for tingling and numbness. Just saying. Not to minimize the seriousness of CIDP.

I am also new to the Mayo Clinic Connect and to the clinic itself. I have been diagnosed with CIDP after an initial diagnosis of Guilliam Barre, then having a major setback in my ability to walk again. I have had 5 full rounds of IVIG. Four rounds in the hospital, three initially when they were just trying to get me to move again and a fourth one just before I was released to the rehab hospital. The final IVIG treatment came and my veins no longer wanted to cooperate having an outpatient IV protocol. The next option, as I refused steroids, was a sub q injected infusion program called Hizentra. I started at a low dosage with little results and after 4 months, my doctor increased the dosage and I seem to be back on track to a form of recovery. I am not thrilled with weekly treatments but I am walking with a cane and should be wearing my AFOs for balance but find I don't need to 100% of the time.

We were able to have my husband trained to do my infusions, which take approximately 2 hours weekly. This is so much better than needing a nurse every two weeks, as proposed with IVIG, for 5 days and 4-5 hours per day. We can travel and take the medication with us as it only needs to be kept at room temperature.

I hope everyone finds more hours of relief! Keep reading and sharing ideas! Don't forget if you can - therapeutic pools are also a wonderful place for relief of pain! Thank you! Nikki