Anyone been diagnosed with CIDP? It's very rare

Posted by Foxauthor @foxauthor, Oct 28, 2011

Has anyone on this feed been diagnosed with CIDP (chronic inflammatory demylenating polyneuropathy)? It’s very rare and not well known about. I can’t even find it in the list of diseases on Mayo’s site. It’s on the web, and I am on the national registry with the GBS-CIDP national organization. Anyone else out there have it?

Liked by jazzy27, tjp4

@jutty

What do members take for daily pain relief to manage the Pain of burning tingling numbness and any else that the pain of CIDP causes. I get infusions weekly. I am tapering off Prednisones I take Gabapentin CellCept and Cymbalta and supplements that generate nerve reproduction. Any ideas and getting comfortable day in and day out.

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I’m currently I was diagnosed with Fibromyalgia about 15 years ago. I have clinical depression. I’m on Cymbalta for that.

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@dlcutler

I just joined Connect, and saw your post in another string about your post-infusion arm pain. In September I had two infusions of Flebogamma in my left arm and a month later, one in my right. After that one, I had intense pain just as you describe–elbow to wrist. Since I have nerve pain in all my limbs, I figured it was just more of the same, only it lasted longer. It’s been eighteen days and the pain is better, but still there. Maybe it was triggered by the IV? Did you find out anything about your post-infusion arm pain? Also, I had severe headaches after each treatment. They lasted about two days.
I was diagnosed with CIDP in September, but my neurologist isn’t sure about the diagnosis. My spinal protein levels were only modestly elevated (56), and I have hyperreflexia instead of hyporeflexia. Otherwise, I have nerve pain, muscle twitches, etc. So, I’m going to the Mayo Clinic next month. Hopefully they can figure it out.

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Headaches are common after the infusions. I’m given 2 Tylenol for the headache and 2 Benadryl for possible rash side effects. I’m told to hydrate hydrate hydrate starting 2 days before and 2 days after the infusion to help with the headache. I’m wiped out for the next few days afterwards, with flu like symptoms. I did 5 days of IVIG and now going every 3 weeks. CIDP exacerbates my fibromyalgia pain immensely. No improvement yet. I’m having problems with my hands and arms lately. Under the skin crawly feeling. Is this part of it?

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@sdswoboda53

I have it. I began having balance issues and falling ‘out of the blue ‘ in the fall of 2017. A few months later, it was getting worse. I was scared it was something related to my terrible Fibromyalgia which I’ve had for over 20 years. My PCP ran tests and decided to send me to a neurologist in early 2018. He ran EMG testing and stuck my left leg with needles. He mumbled something about CIDP as he left the examination room. My Doctor’s office couldn’t make sense of his notes or through a phone call to him. So 6 vials of blood were drawn, and I was sent to Dr Melanie Taylor in Grand Rapids MI. She redid the EMG tests herself and went to analyze the results. She told me my blood tests showed an autoimmune marker. Her analysis of the tests she performed plus the blood tests made her 99.8% sure I had CIDP. She somewhat explained it (or I couldn’t process it). It is very rare, 3-8 out of 100,000 people have it. How was it explained to you as far as what it does to the body??

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Hi, @sdswoboda53 – welcome to Mayo Clinic Connect. I'd be scared, too, if I began having balance issues out of the blue and falling. I am glad you do have a diagnosis at this point with the chronic inflammatory demyelinating polyneuropathy (CIDP) your doctor indicated.

I'd like to ask members @sherlock @mayor47 @jazzy27 @vander626 @jgk85 @jutty and others to return and share about what your doctors may have explained to you about what CIDP does to the body, and also provide an update on how you are doing currently. I'd also invite @johnbishop and @hopeful33250 to participate in this discussion.

While waiting for them to join in, here are some resources on CIDP you may find helpful:

– CIDP information from the National Organization for Rare Disorders https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/

– A Mayo Clinic Proceedings paper on CIDP explaining its history, diagnosis and management for medical professionals https://www.mayoclinicproceedings.org/article/S0025-6196(18)30236-2/fulltext

@sdswoboda53 – what did your doctor prescribe as far as treatment for your CIDP?

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@sdswoboda53

Headaches are common after the infusions. I’m given 2 Tylenol for the headache and 2 Benadryl for possible rash side effects. I’m told to hydrate hydrate hydrate starting 2 days before and 2 days after the infusion to help with the headache. I’m wiped out for the next few days afterwards, with flu like symptoms. I did 5 days of IVIG and now going every 3 weeks. CIDP exacerbates my fibromyalgia pain immensely. No improvement yet. I’m having problems with my hands and arms lately. Under the skin crawly feeling. Is this part of it?

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My experience with infusions for CIDP has been headaches when the drip rate is too fast. I'm very tired for 2 days afterwords but my energy increases and pain lessens.

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Thanks for the info. My infusions are supposed to take 6 hours, but I've had 2 that were less than 5 hours. That's probably the reason for the headache. You've been very helpful

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@lisalucier

Hi, @sdswoboda53 – welcome to Mayo Clinic Connect. I'd be scared, too, if I began having balance issues out of the blue and falling. I am glad you do have a diagnosis at this point with the chronic inflammatory demyelinating polyneuropathy (CIDP) your doctor indicated.

I'd like to ask members @sherlock @mayor47 @jazzy27 @vander626 @jgk85 @jutty and others to return and share about what your doctors may have explained to you about what CIDP does to the body, and also provide an update on how you are doing currently. I'd also invite @johnbishop and @hopeful33250 to participate in this discussion.

While waiting for them to join in, here are some resources on CIDP you may find helpful:

– CIDP information from the National Organization for Rare Disorders https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/

– A Mayo Clinic Proceedings paper on CIDP explaining its history, diagnosis and management for medical professionals https://www.mayoclinicproceedings.org/article/S0025-6196(18)30236-2/fulltext

@sdswoboda53 – what did your doctor prescribe as far as treatment for your CIDP?

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I'm doing IVIG every 3 weeks. I couldn't take gabapentin.

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@lisalucier

Hi, @sdswoboda53 – welcome to Mayo Clinic Connect. I'd be scared, too, if I began having balance issues out of the blue and falling. I am glad you do have a diagnosis at this point with the chronic inflammatory demyelinating polyneuropathy (CIDP) your doctor indicated.

I'd like to ask members @sherlock @mayor47 @jazzy27 @vander626 @jgk85 @jutty and others to return and share about what your doctors may have explained to you about what CIDP does to the body, and also provide an update on how you are doing currently. I'd also invite @johnbishop and @hopeful33250 to participate in this discussion.

While waiting for them to join in, here are some resources on CIDP you may find helpful:

– CIDP information from the National Organization for Rare Disorders https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/

– A Mayo Clinic Proceedings paper on CIDP explaining its history, diagnosis and management for medical professionals https://www.mayoclinicproceedings.org/article/S0025-6196(18)30236-2/fulltext

@sdswoboda53 – what did your doctor prescribe as far as treatment for your CIDP?

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I opted for trying physical therapy first. After that it was gabapentin, which made me sick. I started IVIG infusions mid November. I had a bad fall on 12/15/18 which resulted in a concussion and a very sore body. And on January 2, 2019 I fell again. So now I have to get an orthotic for my left foot.
The pain I have from the CIDP on top of all the issues from fibromyalgia is really hard to cope with. My fibromyalgia pain is 24/7/365 for almost 20 years. I also have bulging discs in lower back and degenerative disk disease, which I have treated at MI Pain Clinic. Tack on anxiety and clinical depression and you have about 75% of my medical issues. I have a supportive as he can be husband. And I have my faith in God which is extremely important to me!
I'm so glad I found your site… I rely on Mayo Clinic for health information. Thank you for allowing me to be part of Connect. Hoping to learn from others and be helpful if I can.

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Hello, I was just diagnosed with CIPD. My neurologist wants me to take ivig gamunex C 5X in a row and then once every 3 weeks for 3 months. But my copay is $3,000 per infusion. So expensive. I can't afford this. I tried financial assistance but was turned down. Any ideas from the group is welcomed.

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@jgk85

I do and I've had it for about 16 years. it progressed very slowly over the years, but it has really accelerated for the past two years. Maybe age has something to do with it – I just turned 85 this month. But I was always a healthy, active athlete even in my senior years. I was adopted as a baby, so I know nothing of my family history. I had IVIG infusions for many years to keep the CIDP in check, but it became ineffective a year or so ago. So for the last 7 months I've had Plasmapheresis two days a month which seems to help somewhat. But it persists. I've been diagnosed with foot drop in both my legs, the right being the most debilitated. Consequently I have to wear a leg brace to maintain a normal gait. Fatigue is a constant. If it weren't for my pain medication and a prescribed stimulant and lots of caffeine, I probably couldn't function very well. I live alone, and can drive and manage on my own, but for how long is anybody's guess.
This is my first time to post on this site and I guess it's much longer than it should be, but I'm hopeful I can get a lot of feedback from other members who are suffering from CIDP.

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Hello, do u mind sharing what the name of your ivig medicine is? I was just diagnosed and my doctor wants to use gamunex which is very expensive. My copay per infusion is almost $3,000. I can't afford this.

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@lisalucier

Hi, @sdswoboda53 – welcome to Mayo Clinic Connect. I'd be scared, too, if I began having balance issues out of the blue and falling. I am glad you do have a diagnosis at this point with the chronic inflammatory demyelinating polyneuropathy (CIDP) your doctor indicated.

I'd like to ask members @sherlock @mayor47 @jazzy27 @vander626 @jgk85 @jutty and others to return and share about what your doctors may have explained to you about what CIDP does to the body, and also provide an update on how you are doing currently. I'd also invite @johnbishop and @hopeful33250 to participate in this discussion.

While waiting for them to join in, here are some resources on CIDP you may find helpful:

– CIDP information from the National Organization for Rare Disorders https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/

– A Mayo Clinic Proceedings paper on CIDP explaining its history, diagnosis and management for medical professionals https://www.mayoclinicproceedings.org/article/S0025-6196(18)30236-2/fulltext

@sdswoboda53 – what did your doctor prescribe as far as treatment for your CIDP?

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I was just diagnosed and my doctor wants to use gamunex which is very expensive. My copay per infusion is almost $3,000. I can't afford this. Are there cheaper alternatives?

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@tjp4

I was just diagnosed and my doctor wants to use gamunex which is very expensive. My copay per infusion is almost $3,000. I can't afford this. Are there cheaper alternatives?

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I was given Rituximab and it worked great in 2 months

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@tjp4

Hello, do u mind sharing what the name of your ivig medicine is? I was just diagnosed and my doctor wants to use gamunex which is very expensive. My copay per infusion is almost $3,000. I can't afford this.

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insurance punishes working, clean living citizens but pays up front for drug users rehab and their urine scans…..insurance = a license to steal! SHAME ON THEM!

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@jazzy27

I was given Rituximab and it worked great in 2 months

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Thank you

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@kruppm

insurance punishes working, clean living citizens but pays up front for drug users rehab and their urine scans…..insurance = a license to steal! SHAME ON THEM!

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I agree with your assessment of the insurance inequities. You work all your life and are punished for it. Illegal immigrants get better benefits than we do, too. It's a shame. ..

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@dlcutler

I just joined Connect, and saw your post in another string about your post-infusion arm pain. In September I had two infusions of Flebogamma in my left arm and a month later, one in my right. After that one, I had intense pain just as you describe–elbow to wrist. Since I have nerve pain in all my limbs, I figured it was just more of the same, only it lasted longer. It’s been eighteen days and the pain is better, but still there. Maybe it was triggered by the IV? Did you find out anything about your post-infusion arm pain? Also, I had severe headaches after each treatment. They lasted about two days.
I was diagnosed with CIDP in September, but my neurologist isn’t sure about the diagnosis. My spinal protein levels were only modestly elevated (56), and I have hyperreflexia instead of hyporeflexia. Otherwise, I have nerve pain, muscle twitches, etc. So, I’m going to the Mayo Clinic next month. Hopefully they can figure it out.

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My Dr wants to do a spinal tap, too, but I'm too afraid of the pain I have so many chronic pain issues: fibromyalgia terrible pain all over my body 24/7, degenerative disc disease, bulging disks, interstitial cystitis, Pelvic floor pain, and now the CIDP on top of it…
I have gamma globulin infusions every 3 weeks. Hydrate heavily starting a few days before and a few days after. That does help some with the headsches. I, too, feel wiped out for a few days afterwards. I am treated in Grand Rapids, MI.

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