CIDP and concerns about treatment risk factors

Sometimes the cure seems worse than the ailment, especially when we read the fine print on drug we’re about to take. But in this case, with Chronic Inflammatory Demyelinating Neuropathy, it needs to be hit quickly and hard. There are risks but losing the ability to walk, maintain bladder and bowel control, muscle atrophy and nerve damage would be worse.

I had a very similar inflammatory demyelination on my spinal cord 3 years ago. It left me without feeling from my waist to toes in a very short time and I lost my ability to walk. My initial treatment was 1000ml IV steroids daily and then a follow-up of strong anti-inflammatory meds along with IV steroids for months. Within 2 days of the steroids, my legs were working again but the longterm anti-inflammatory IVs and IV steroids were necessary to assure the inflammation was gone completely. Now, my legs are back stronger than ever. So those meds work!

There are risks of blood clots for your husband already but losing the ability to walk would raise that even higher. There are meds your husband can take to lower that risk while on the meds. He should discuss this with his doctor. But starting on the Gemunex is a means to getting this progressive disease under control.

Physiotherapy may improve muscle strength, function and mobility, and minimize the shrinkage of muscles and tendons and distortions of the joints. So you might also make sure you husband asks for a visit with a physical therapist. It was crucial to my recovery.

There are members in our Forum who have also been diagnosed with CIDP. You might find some helpful suggestion in some of their conversations.
CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

There’s also this link to the National Institute of Health’s site on CIDP where it discusses treatments and the disease. https://www.ninds.nih.gov/health-information/disorders/chronic-inflammatory-demyelinating-polyneuropathy-cidp

The good news is that this is treatable. Yes, it can come with some risks but as I mentioned, there are meds that can be given to help prevent blood clots so I wouldn’t let that deter your husband from beginning his treatment. Have you discussed your concerns with his doctor?

Hi @casey1329 I don’t have much to add to the great info and support that @loribmt offered. I just wanted to let you know that I expanded the title of the discussion you started and added it to the Neuropathy support group where most members with CIDP hang out, like @catharbert @kimegraves @amylhoffman @davehayward1 and others

In addition to the main CIDP discussion thread that Lori provided, you might also be interested in this one:
- Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions: https://connect.mayoclinic.org/discussion/cidp-having-ivig-reactions/

I've left 3 messages with the doctor's office, no one has replied. My next appointment is August 12 and there is nothing available before that date. The fact that my husband is getting stronger with each passing day and I'm not 100% convinced that he has CIDP. I lean towards "Alcoholic Myopathy". He has been a heavy drinker for years. Thanks for your help.

Hello
Yes, I was diagnosed with CIDP about 10 months ago and have been receiving IgG infusions. You have every right to be concerned about your husbands diagnosis and treatment, it’s scary.
One important thing to keep in mind, drug package inserts have to list all possible complications that can occur even if probability is low. I am sure your husband’s physician has determined that the outcome and benefits of the treatment out weigh the possible complications. For me the infusions have been beneficial and I see that I am improving.
It is important to be hydrated be for the infusion and for about 12-24 after the infusion I don’t feel great but after that period of time I feel stronger and have less of my symptoms. It is also important to exercise routinely and to follow an anti inflammatory diet. There is also great group to follow or join GIB-CIDP.org. There is an abundance of information, education, support and research available. I hope your husband feels better soon. Please stay in touch and feel free to ask me questions.
Kim

Sorry I gave you wrong web site.
GBS-CIDP.org

Thank you so much for your response. Sometimes I just feel it's too much. This group has been a great comfort. I am amazed at how fast people respond with spot on information like your comment that the inserts are overkill and the doctor has made an intelligent informed decision. It made me feel a lot better. Hope you are feeling better.

Has anyone here seen Mayo for CIDP treatment? My dad who is 74 has been receiving IVIG treatments for 2 years but they seemed to have stopped working and he is quickly declining. Please any advice would help. Thank you!!

Hello @jamiemccorkle, Welcome to Connect. Thank you for being an advocate for your dad. I'm sorry to hear his IVIG treatments have stopped working for him. We merged your post into another discussion on the same topic here - CIDP and concerns about treatment risk factors: https://connect.mayoclinic.org/discussion/cidp/ so that you can connect with other patients like @kimegraves @casey1329.

While we wait for other members who have been treated for CIDP at Mayo Clinic to share their experience, I thought I would share the following video with you.

" Jun 1, 2018 Dr. P. James Dyck and Dr. Peter J. Dyck, Neurologists from Mayo Clinic in Rochester, MN, dialogue about an article appearing in the June 2018 issue of Mayo Clinic Proceedings, which examines the “discovery” of Chronic inflammatory demyelinating polyradiculoneuropathy from its roots. The article provides and update on the current and best treatment options. " --- Chronic Inflammatory Demyelinating Polyradiculoneuropathy: https://youtu.be/eZL2wx4xQ08

Are you looking to get an appointment at Mayo Clinic for your father?

Good afternoon, I am so very sorry your Dads condition has deteriorated. Many times IgG therapy has to be individually designed for each patient and it is common that after a period of time they may need to have adjustments made to the infusions. Have you spoken to your Dads physician?
Have you verified with his neurologist that it is the CIDP that is causing his declining condition or is there some other medical problem that has now precipitated? Please make an appointment with his neurologist ASAP.
CIPD is a very difficult disease and many times IgG alone does not diminish all symptoms. IgG along with an anti inflammatory diet, exercise and decrease stress has helped me immensely. I notice that when I stray from either physical exercise or participate in poor diet choices my symptoms return and are at a high level. Please keep in contact.
Kim

Thank you for your reply! His neurologist is leaving the state soon and has not been responsive to his questions. We have a phone consult with Mayo tomorrow, so hoping for good things! I appreciate your input!