1. < Autoimmune Diseases

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Posted by sherlock @sherlock, Jan 6, 2019

I have been in treatment for CIDP going on 3 years. The treatment is IVIG infusions 2days a month. I also have small fiber neuropathy. I don't take any meds for this condition except CBD. CBD with lidocaine and some THC at bedtime. I can't take any of the first tier drugs like lyrica. Here's my question: Have any of you been treated for neuropathy with IVIG infusions?

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harley22 | @harley22 | Aug 9 3:42am
In reply to @slkanowitz "Harley, I just got my first infusion of the Rituxan bio equivalent Truxima yesterday at our..." + (show)
@slkanowitz

Harley, I just got my first infusion of the Rituxan bio equivalent Truxima yesterday at our Scottsdale office. It went well. The infusion center is very comfortable and the infusion nurse very good. I actually felt better today than I have in months. I expected the opposite based on a previous experience several years ago. so am curious how I will feel going forward. It’s supposed to take 2-3 months to work, but I am grateful for 1 day of better energy and less pain. I so hope you have a good result when you start your treatment. I am temporarily increasing the frequency of IVIG from every 3 weeks to every two but will go off IVIG in 3 months if the Rituxan is working well. I hope your relocation goes well. I continue to be impressed with Dr Sivakumar, and I am very picky. I feel a ray of hope arising in me which is more than welcome! Take care!

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I’m so glad to hear of your positive results with your infusion.
I am moving to my rental on Aug 22, just sold my house and we’re packing up.
My house is coming along in Scottsdale, hoping it’ll be done by end of Sept, but I’ll believe it when I see it.
My first infusion is scheduled for Sept 3rd and my second on the 10th.
I will keep you posted and I’m hoping I’ll get favorable results.

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debbiewave | @debbiewave | Aug 11 1:07pm
In reply to @becsbuddy "@debbiewave Your husband’s situation sounds so difficult for both of you. Is he currently being seen..." + (show)
@becsbuddy

@debbiewave Your husband’s situation sounds so difficult for both of you. Is he currently being seen by any doctor? If you live in the Mid- west, there are several options.
this first link is about the numerous hospitals that partner with Mayo.
https://www.mayoclinichealthsystem.org/?
Other options to try are comprehensive medical centers and university teaching hospitals. You can call the hospitals directly and ask for what you need. That’s what my husband had to do. When I was at my worst and getting no help from our local hospital, my husband called the university hospital in Denver and asked for an appointment. I didn’t make that appointment, though, because I got very sick and ended up in ER. Then our hospital called the university hospital and asked for help. They told the ER how to treat me! And that’s how I came to still be here and telling you what to try!
What do you think you’ll say when you make the calls?

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I was able to get a phone appt. with Dr. Dai, a neurologist in Albuquerque, NM - 3.5 hours away. It is not until 9-19 but it is something.
2 tries for appointment at MAYO in Phoenix with no luck. Local Neurologist that said it was hereditary - which genetic test show it is not - sent a referral with his records to MAYO. They are not taking any new neuro patients.

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1 reply
kgitti | @kgitti | Aug 12 11:55am
In reply to @debbiewave "I was able to get a phone appt. with Dr. Dai, a neurologist in Albuquerque, NM..." + (show)
@debbiewave

I was able to get a phone appt. with Dr. Dai, a neurologist in Albuquerque, NM - 3.5 hours away. It is not until 9-19 but it is something.
2 tries for appointment at MAYO in Phoenix with no luck. Local Neurologist that said it was hereditary - which genetic test show it is not - sent a referral with his records to MAYO. They are not taking any new neuro patients.

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Good, that is pretty prompt for Dai-a month ago a friend I sent her got a January Zoom appt. I wrote her a message on his behalf and they moved it up to last week.
I was turned down at Mayo too for same reason, but Drs at Rust Presbyterian have been terrific-no complaints.

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1 reply
debbiewave | @debbiewave | Aug 12 6:41pm
In reply to @kgitti "Good, that is pretty prompt for Dai-a month ago a friend I sent her got a..." + (show)
@kgitti

Good, that is pretty prompt for Dai-a month ago a friend I sent her got a January Zoom appt. I wrote her a message on his behalf and they moved it up to last week.
I was turned down at Mayo too for same reason, but Drs at Rust Presbyterian have been terrific-no complaints.

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Thank you for the referral. We will anxiously wait for Sept 19th

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sb4ca | @sb4ca | Aug 20 12:31pm
In reply to @twinkie23 "I just finished my second IVIG treatment for multi-symptom SLE and small fiber neuropathy. I am..." + (show)
@twinkie23

I just finished my second IVIG treatment for multi-symptom SLE and small fiber neuropathy. I am having difficulty with the side effects , mainly debilitating migraine (6days), nausea and weakness. I have not had any positive results yet but understand it can take several months for any relief.

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You might want to make sure you are infusing slowly enough. These symptoms are common with faster infusion rates. It is especially important at the beginning to infuse at a slow rate.

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gbspgh309 | @gbspgh309 | Aug 26 5:46pm

I had 4 IVIG infusions after being diagnosed with GBS. My hands healed rather quickly, my feet and lower legs are taking longer. I am already receiving IVIG each month for hypogammaglobulinemia. Then4 treatments for GBS were stronger.

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gwendolyn1956 | @gwendolyn1956 | Oct 11 1:09pm

Does anyone else get so fatigued after just doing simple things. I could barely drag myself through the grocery store, my legs were so weak. As soon as I got home I fell asleep for an hour.

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harley22 | @harley22 | Oct 11 5:42pm

I also get so tired going out,especially going to any kind of store.
My legs get so tired and I can fall asleep anywhere,
It really limits what I can do on a daily basis.
M Y feet hurt so badly I can hardly step on them
It’s no fun

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1 reply
kgitti | @kgitti | Oct 12 2:46pm
In reply to @harley22 "I also get so tired going out,especially going to any kind of store. My legs get..." + (show)
@harley22

I also get so tired going out,especially going to any kind of store.
My legs get so tired and I can fall asleep anywhere,
It really limits what I can do on a daily basis.
M Y feet hurt so badly I can hardly step on them
It’s no fun

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I’m fortunate to not have pain with my CIDP. I was diagnosed with a sub desease AMSAN Acute Motor Sensory Axonal Neuropathy.
But I do have significant general and periferal arm and lower leg fatigue.
I’m on Hizentra SCIG weekly and I take methylphenidate to help with the fatigue. It does help.

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dwyermw | @dwyermw | Oct 13 6:12am

work towards taking no drugs for fatigue . Instead, Start walking more. Take a chill bath in a portable tub each morning at 47° for 6 minutes. Please look up the benefits of taking a cold tub. You can buy an aquarium chiller and a portable tub For around$400. I used to take Amantadine For fatigue.

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