CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

I am on Panzyga. I get it three days every three weeks.
That is the recommended dosage. 600 mls each day.
2mls/kg. Infusion time is six hours.
It makes a huge difference in my life. It helps my balance/dizziness and energy levels along with the muscle atrophy. I can finally sign my name due to the motor neuropathy my hands shook so bad I couldn’t write or sign my name.
My legs also have tremors. It gets better with the infusions.
Make sure it is given as directed by the manufacturer. Mine is autoimmune caused by my lupus, sojourns, mixed tissue disease and Hashimotos.
I have been diagnosed with several different types of neuropathy.
CIDP, dysautonomia, small fiber neuropathy, cardiac autonomic neuropathy, severe axonal sensorimotor peripheral polyneuropathy.
Cardiac autonomic neuropathy aka CAN causes blood pressure is either too high or low. It also causes arrhythmias bradycardia/tachycardia your heart beats too slow/or fast.
Neuropathy moves to anywhere in your body that you have nerves including your organs. I do not have as many arrhythmias as I used to since I started this.
I took IVIG from age 10-18. The neurologist said I should have never stopped it. She told me if I would have never stopped it I would not be in the shape I am in today.
She also told me I would be on it the rest of my life. Dr Anne Oaklander is a research neurologist. I live in Tx and went to Boston for answers. I was having problems with the motor neuropathy. It says movement disorder. They kept trying to diagnose me with Parkinson’s (negative) and then essential tremors. My tremors were due to the motor neuropathy. That’s sad I had to go to Boston to find out the truth.
I am 63.

@artemis1886 Wow! I’ve never heard of one person having so many neuropathy serious diagnoses! I do have autonomic involvement, and with diagnosed Parkinson’s and diagnosed polyneuropathy, along with hypogammagobulinanemia, where I’m scheduled to undergo panzyga infusion, maybe I should investigate further, like you have! Your situation I find to be quite remarkable! You must have times when it is very difficult to function very well!! I’m glad the infusion’s are helping you, making your life a little bit easier, and I hope they will help me! Thank you for your info. and participation in this forum! Wishing the best for you!

@itsmeagain
Hugs and bless you!

@evigg208 I’m so very sorry to hear of you having these abnormal findings, with the tests! It was frustrating, i know, for me, when I got abnormal test results. These neurological, and many immunological disorders, can be very difficult, and time consuming for Medical Providers to diagnose! I’ve been through that process, several times. myself, and it was hard to cope, when I was in a so-called ‘in between diagnostic place’! I feel your frustration, and this must really be hard for you! Sometimes, it takes the Doctor’s a couple years to come up with a firm diagnosis! I am nearly 80 now, waiting on a firmer diagnosis of the exact type or strain of Chronic inflammatory Polyneuropathy! Maybe, I’ll find out from my immunologist soon. The one consolation ( if you want to put it that way ), is that my blood test antibodies, and analysis of polyneuropathy tests and symptoms, has been analyzed by the Mayo Clinic Medical Team, and abnormal results were found, so my immunologist has set up IVIg infusion of the Pfizer version of ‘hizentra’! Originally, he ordered ‘hizentra’ but changed it last week! I just can’t remember the exact name. So, I start the initial infusion this week. Back when I was 37 years old, I had some areas of numbness, pins and needles sensations, in a number of places, including my back, and limbs! The caring neurologist had me admitted to hospital, for a week of tests. I had EMG testing, spinal puncture, to check for protein in the spinal fluid, and Cat scans, along with exams from medical students and Attending Physician’s! The best they could come up with, was possible demyelinating disease! I had that diagnosis for a couple years! It took another hospital stay, when my symptoms became more defined, for the Medical Team Investigators to finally come up with the right diagnosis! An angiogram revealed an inoperable anomaly of an artery, in the cerebellsr/pons brainstem area, that was causing my irritating symptoms! So, on and off, I’ve been dealing with this investigative phase of waiting on a neurological diagnosis, several times! Oh, and I haven’t even told you about how long I had to wait for a diagnosis, of Parkinson’s Disease, where my symptoms included freezing episodes, where I would stiffen up, and fall over, unable to stop myself from falling flat on my face! That story is for another time, though! I wish you the best of luck, and I hope the final diagnosis, for you, is something that you can accept and be able to deal with! Here at Connect, with this forum, we do care about each other, and can relate to what you are going through!

Good morning
Yes, I have CIDP and receive IVIG every two weeks and what a difference it makes. I also take gabapentin for the pain and paresthesia. I was diagnosed 5 1/2 years ago and with treatment I have good and challenging days, the IVIG usually helps for about 10-12 days and then the symptoms start to come back.
I am sure you will see a difference but it took about 1-2 years for the drug to reach maximum effect.
Good luck and keep us posted.

Hello all, I have a diagnosis of CIDP, I did IVIG infusions for awhile. I developed a reaction, so my Neurologist switched me to Vyvgart hytrulo. I have been giving myself subq injections at home for about 4 months, I have since started having migraines, vertigo, nausea, vomiting.....my Neurologist added 3 new medications. Anyone else been on Vyvgart hytrulo? I have also started having muscle spasms in my cheeks close to my jaws, increased weakness and exhaustion.

@hjw473 I am completing 2 months of self-injected Vyvgart hytrulo. Nest week is the last shot. So far, no side effects and no pain relief. I have Waldenstrom's (supposedly in remission) and a nerve condition called anti-mag polyneuropathy which causes pain, numbness, tingling, etc. in my feet and ankles. I have had this condition since 1991. Good luck.

@foundryrat743
@itsmeagain
Your Parkinson’s issues sound so familiar. I, too, did lots of falling-just standing still, minding my own business and pow, I’m on the ground.
But 10 years later I’m told it’s not Parkinson’s but CIDP which is worse than the Parkinson’s.
I’m 83 and have been on Privigen ivig for 3 years but Dr. and I feel I’ve reached a plateau which I don’t like but…..
I take it 2 days a month and I had to go off schedule 2 years ago when we had to evacuate for 8 days because of hurricanes (I live in Fl!) and I really slid backwards. So I’m back on schedule presumably for life.
As far as the neuropathy I’ve found that Alpha Lipoic Acid pills work to some extent.
God bless us and good luck to all with these crosses we bear.
And thanks Mayo.

@itsmeagain Thanks for your encouraging reply! I have used Alpha Lipoic Acid before, for tinnitus, so, perhaps, I’ll try it for the other problems I’m having! I finally got coping with Parkinson’s Disease easier for myself, and learned how to control triggers, for atrial fibrillation episodes, but this hypogammaglobulinemia, coupled with chronic inflammatory polyneuropathy has become a pain, where a pill won’t reach, so to speak, for me! My immunologist has prescribed a Pfizer product antibodies infusion course, but I’m having a terrible time getting approval and funding from Medicare and Secondary insurance! Meanwhile, I feel the disorder progressing, with parasthesias going further up my arms, and legs! Because of what inflammatory arthritis, carpal tunnel syndrome, and Parkinson’s shakiness has done to my hands and arms, I don’t feel I can do self infusions, and my daughter, who has a nursing degree, but doesn’t live near me, to help me, agrees. My pharmacy insurance provider refused to approve my and my Dr’s request, for I-V infusion, at an infusion center. So, I’m waiting on Medicare and my secondary insurance! At this point, I don’t know who to turn to, for help! At nearly 80, I’m to old to play the political games, that go against my health needs! There were cuts to Medicare coverage, and I lost my Medicare Advantage coverage, through the last government bill, that deeply impacted my finances! I’ve already had to pay out of pocket nearly $3,000 dollars, for medical care, since January! I didn’t have secondary medical insurance in January! I had to have scans, tests, and Dr. appointments in January, that revealed that I had a stroke, on top of everything else! The hospital was cruel, in saying that they would not provide scans, or tests, or Dr. care, unless I paid, in cash, the amount that Medicare doesn’t cover. So, It didn’t matter to them if I was sick! So, they demanded money up front, I paid them! By the way, I have an excellent credit rating and history! What’s so ironic about all this, that’s been occurring, since January 1, is that I used to work, for this same hospital, as a security supervisor, before I retired, some 22 years ago, when I was in good health! I recall how I worked so hard, stopping crazed patients, from attacking, or hurting ER Dr’s, hospital personnel, patients and visitors, a couple times putting my own life and well being in jeopardy! So, what a way for this hospital staff to thank me, for my service to them, by denying me any kind of care, unless I pay cash upfront, for the amount not covered by Medicare! These are difficult times, especially for vulnerable, elderly people, where I live. I can imagine there are, also, limitations on Fiji for you! Thanks again for your reply! I am so thankful that Mayo, has this forum! By the way, the hospital that I mentioned, in my comments, is NOT Mayo, or a Mayo related hospital!

@itsmeagain CORRECTION, from foundryrat743. I wrote Fiji instead of Florida, as your place of residence! I apologize for that! I misread the Fl initials. I have vision problems, from my stroke/not that that is an excuse, but it can be a problem for me, at times! The special, expensive, prisms in my glasses seem to, sometimes, play tricks on me! Ha!