1. < Autoimmune Diseases

Has anyone really gotten over CIDP?

Posted by kgitti @kgitti, Apr 3 3:28am

I’ve had it since late 2019 and worked very hard to keep it under control with weekly SCIG infusions (IVIG AT FIRST), regular PT, exercise, periodic steroid runs, low inflammation diet, weight loss etc.
When it started I couldn’t comb my hair but I am able to do some work and limited exercise now.
But I still battle with enormous exhaustion daily and depression at facing this every morning (and yes I take antidepressants).
And every time I get a virus it sets me back for weeks.
Overall I suppose I am holding my own-overall it’s not getting any worse.
But I have never experienced anything I would call a true remission.
Is there such a thing?

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harley22 | @harley22 | Apr 7 10:04am
In reply to @slkanowitz "Harley, I am 10 minutes from Scottsdale in Fountain Hills and the neurologist is in Scottsdale,..." + (show)
@slkanowitz

Harley, I am 10 minutes from Scottsdale in Fountain Hills and the neurologist is in Scottsdale, Dr Sivakumar. He has superb credentials and is a neuromuscular specialist, very knowledgeable about CIDP. Drs can do a lot of arm twisting with insurance companies if you ask and they are willing (appeals, etc) Many of the pharmaceutical companies have patient assistance programs that cover the cost or your copays if you meet the financial criteria. Most of those are reasonable, not at poverty levels. Look up the company that makes Rituxan and call them. It’s worth starting it there, as you get 2 infusions 2 weeks apart then wait 6 months for the next. I hope you make some progress with this and your move to AZ goes smoothly. I am happy to help you out when you get here or provide more information prior to your move. Good luck, take care!

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I might just take you up on your Neuro doc suggestion.
I have friends that live in Fountain Hills and it isn’t that far from where I will be living.
Hang in there,as I will.
Hopefully I can touch base with you when I’m out there permanently,as I will need all new physicians.

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2 replies
slkanowitz | @slkanowitz | Apr 7 2:18pm

Yes, that would be fine. Biogen/Genentech is the pharmaceutical company for Rituxan and they do have a patient assistance program to help cover copays.

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1 reply
slkanowitz | @slkanowitz | Apr 8 9:34pm

You’re right. I wasn’t aware that hypersalivation occurs in several chronic neurological conditions. I was only aware of it in Parkinsons Disease. So many interesting and weird things our bodies do when malfunctions occur. Most nights my mouth is so dry I can hardly swallow because of my CPAP machine. I wonder what makes it change from one extreme to the other. I guess I will start sleeping on a towel for nights saliva is overflowing. Yeesh!

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1 reply
dlydailyhope | @dlydailyhope | Apr 9 7:23am
In reply to @slkanowitz "You’re right. I wasn’t aware that hypersalivation occurs in several chronic neurological conditions. I was only..." + (show)
@slkanowitz

You’re right. I wasn’t aware that hypersalivation occurs in several chronic neurological conditions. I was only aware of it in Parkinsons Disease. So many interesting and weird things our bodies do when malfunctions occur. Most nights my mouth is so dry I can hardly swallow because of my CPAP machine. I wonder what makes it change from one extreme to the other. I guess I will start sleeping on a towel for nights saliva is overflowing. Yeesh!

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@slkanowitz
I also sleep with a cpap and would wake up with pool of saliva in my mask! Yuck! 🤢

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harley22 | @harley22 | Apr 9 10:04am
In reply to @harley22 "I might just take you up on your Neuro doc suggestion. I have friends that live..." + (show)
@harley22

I might just take you up on your Neuro doc suggestion.
I have friends that live in Fountain Hills and it isn’t that far from where I will be living.
Hang in there,as I will.
Hopefully I can touch base with you when I’m out there permanently,as I will need all new physicians.

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I googled the address of the doc you sent me on E Shea and you won’t believe this, I’m going to be within 5 min from his office, literally around the corner.

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harley22 | @harley22 | Apr 10 9:55am
In reply to @slkanowitz "Yes, that would be fine. Biogen/Genentech is the pharmaceutical company for Rituxan and they do have..." + (show)
@slkanowitz

Yes, that would be fine. Biogen/Genentech is the pharmaceutical company for Rituxan and they do have a patient assistance program to help cover copays.

Jump to this post

I am going out to Scottsdale next month and I called Dr. Sivakumar’s office to see how far out they were booking,and I was able to get an appt while I was out there,as they just had gotten a cancellation for that day.
I have to get med records sent to them before they’ll see me.
Next is a primary care physician.
Thanks again!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 10 12:31pm
In reply to @harley22 "I might just take you up on your Neuro doc suggestion. I have friends that live..." + (show)
@harley22

I might just take you up on your Neuro doc suggestion.
I have friends that live in Fountain Hills and it isn’t that far from where I will be living.
Hang in there,as I will.
Hopefully I can touch base with you when I’m out there permanently,as I will need all new physicians.

Jump to this post

@harley22 You may see your email address disappear from this post. Connect is a very public forum and we try to keep everyone’s information private. You can use private messaging to share email and phone numbers.

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000000000000000000000000000000000000000000000000000000000000000000000 | @scott22 | Apr 11 12:56pm
In reply to @harley22 "Honestly I don’t know how I cope really. Some days are better than others. I’m a..." + (show)
@harley22

Honestly I don’t know how I cope really.
Some days are better than others.
I’m a stay at home much more than I used to be due to my mobility issues.
I use a rollator when I need to, and I have hand controls in my car.
I was very independent before all this started affecting me.
It’s just frustrating to say the least.

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to harley22

I was diagnosed June 2023 after an EMG test with Sever Demyelinating and Axonal Sensorimotor Polyneuropathy. When I looked that up on line I found CIDP. The neurologist who performed the EMG test is also my doctor. He ordered a complete Neuorpathy bloodwork panel. Some of the blood test were done at the Mayo. The only test that was positive was the Erythrocytes Sedimentation Rate which is used to check the amount of inflammation in my body. Normal range is 0-15 mma/A and my result was 25 High. The cause of my Diagnosis became Idiopathic unknown what was causing the high levels of inflammation in my body. My immune system was attacking everything in my body. I spent countless hours searching for ways to reduce inflammation. This is what I started i immediately. I changed my menu of foods to those foods that decrease inflammation. Mainly fruits and vegetables. I stop all sugar, sodium, can fruits and vegetables, processed foods, very lean red meat once a week, lost 36lbs and started to exercise 60-90 minutes each day. You can find all this online. I have been doing this for 3 months now and I believe I might have slow down the progression of this disease. I also started to have very bad symptoms after I had 2 Covid shots. I have now become very in tune with this disease. When I see my neurologist in June I will explain what I have been doing and ask him if can shut down my immune system and then boot it back up at some point. If I am correct that I have lower the inflammation in my body, then by shutting down my immune system and booting back up it should fool my immune system that there is no infection in my body to fight. I hope to know by July. Sorry for this very long comment but that’s my story

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slkanowitz | @slkanowitz | Apr 11 6:03pm

You are doing some good things for your health in general and that’s great. The CIDP is autoimmune meaning your immune system has lost the ability to recognize your tissues, like the myelin sheath on nerves as yourself and is mistakenly attacking it as if it were a foreign substance. There is no infection involved. That involves a germ. This is inflammation only, no germs involved. I would discuss with your doctor whether you should have any vaccines going forward. I hope the CIDP stays mild but at some point you may need treatment and I would not hesitate. This is debilitating disease that can be progressive and the damage doesn’t reverse. Good luck and stay in touch please.

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