CIDP (chronic inflammatory demylinating 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?

@txamo

I have a rare autoimmune neuromuscular disease that was diagnosed six years ago. Right now I am only treated with Gabapentin. I also have multiple fractures in my spine due to osteoporosis. I am in severe pain with the constant neuropathy and pain in my back. I have been treated by a pain clinic with many procedures and pain killers. My question is: has anyone ever been treated with ketamine for pain and if so,did it work?

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Hello @txamo, Welcome to Mayo Clinic Connect. You will notice that we have moved your post to an existing discussion "CIDP (chronic inflammatory demylinating polyneuropathy)" so that you can meet other members with similar symptoms and learn what they have shared helps them. If you click the VIEW & REPLY button at the bottom of the email notification, it will take you to the discussion.

You may also be interested in the following related discussions:
– Ketamine for chronic pain: https://connect.mayoclinic.org/discussion/ketamine-for-chronic-pain/
– Ketamine Infusion: https://connect.mayoclinic.org/discussion/ketamine-infusion/

Have you been able to discuss ketamine as a possible treatment with your doctor or care team?

Liked by rwinney, Hank

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@harley22

I have just finished my second round of IVIG infusions, and I don’t feel any relief in my neuropathy symptoms.
I will be having my third round ,middle of December, then I’ll get reassessed by my neurologist.
Has anyone felt any improvement, after their treatments?
I’m getting IVIG for CIDP.

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I was on IVIG for five years. Twice I was paralyzed from head to toe with CIDP. For the last 15 months of indusions I did not see any change in strength or pain. I also tried plasmapheresis and steroid infusion. I am baseline now. Walking with a walker. I have severe pain in my spine.

Liked by Hank, bustrbrwn22

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@txamo

I was on IVIG for five years. Twice I was paralyzed from head to toe with CIDP. For the last 15 months of indusions I did not see any change in strength or pain. I also tried plasmapheresis and steroid infusion. I am baseline now. Walking with a walker. I have severe pain in my spine.

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@txamo
My friend I am so sorry to hear of your terrible condition of CIPD. Please accept my deep feelings of sorrow for your suffering. May I ask what has led you to explore ketamine? I remember seeing a video by a doctor describing some of the benefits of it. I thought I had a link saved but cannot find it. Can you describe whether the gabapentin helps and what side effects you have from it. Have you tried other meds for pain? It would be interesting to hear more about your history with your illness; the more you can flesh out the more likely it would be that someone here might come up with some useful tidbit that perhaps might be helpful to you. I really can't imagine what utter despair a disease like this can cause one. I hope you have some good support people in your life. Best, Hank

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@jesfactsmon

@txamo
My friend I am so sorry to hear of your terrible condition of CIPD. Please accept my deep feelings of sorrow for your suffering. May I ask what has led you to explore ketamine? I remember seeing a video by a doctor describing some of the benefits of it. I thought I had a link saved but cannot find it. Can you describe whether the gabapentin helps and what side effects you have from it. Have you tried other meds for pain? It would be interesting to hear more about your history with your illness; the more you can flesh out the more likely it would be that someone here might come up with some useful tidbit that perhaps might be helpful to you. I really can't imagine what utter despair a disease like this can cause one. I hope you have some good support people in your life. Best, Hank

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@txamo
Here is the video I was looking for. Although the speaker is discussing using ketamine for Central Sensitization there is a lot of info in the video regarding what ketamine does, how it works. Maybe you'll find it interesting w.r.t. what info you are seeking:

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@jesfactsmon

@txamo
Here is the video I was looking for. Although the speaker is discussing using ketamine for Central Sensitization there is a lot of info in the video regarding what ketamine does, how it works. Maybe you'll find it interesting w.r.t. what info you are seeking:

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@jesfactsmon This is a great video which offers an excellent breakdown of Central Pain Sensitization and Ketamine. I anticipate continued learning at Mayo's pain rehab program soon. Thanks for posting Hank!

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I have. I was getting infusions since 2014 until last year. They stopped working for me. I did not feel any different the day before and infusion or the day after, so the neurologist and I agreed to stop them. I also tried plasmapheresis which did nothing. I was paralyzed from head to toe twice with CIDP. I walk now (usisng a walker). I still have terrible neuropathy. I cannot take steroids because of severe osteoporosis.

Liked by Hank

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@txamo

I have. I was getting infusions since 2014 until last year. They stopped working for me. I did not feel any different the day before and infusion or the day after, so the neurologist and I agreed to stop them. I also tried plasmapheresis which did nothing. I was paralyzed from head to toe twice with CIDP. I walk now (usisng a walker). I still have terrible neuropathy. I cannot take steroids because of severe osteoporosis.

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@txamo Hello. I've read your posts and cant bring myself to hit that little ♡ and "like" them. Simply because liking what you are saying just doesn't feel right. So, here I am wanting to let you know that I have deep fealt empathy for you and your chronic pain diagnoses. I'm very happy you received beneficial help with IVig for 5 years and were able to overcome being paralyzed. That is a miracle. It's time to brainstorm again however. I have small fiber polyneuropathy and tried lidocaine infusions for 5 months. Although they did not work for me, they do for some. Has your neurologist ever mentioned this treatment?

Ketamine infusions have greatly benefited some people. I recall a lady here on Connect being in a wheelchair and then being able to get out and walk with the help of Ketamine infusion. When I inquired about Ketamine with my neurologist I was told he does not provide the treatment nor does his affiliated medical college hospital, and that I'd have to pay out of pocket typically. I truly wish you the best of luck with forward progress and pain relief. – Rachel

PS: Wondering if you have ever been treated at Mayo Clinic?

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@txamo

I have. I was getting infusions since 2014 until last year. They stopped working for me. I did not feel any different the day before and infusion or the day after, so the neurologist and I agreed to stop them. I also tried plasmapheresis which did nothing. I was paralyzed from head to toe twice with CIDP. I walk now (usisng a walker). I still have terrible neuropathy. I cannot take steroids because of severe osteoporosis.

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@txamo I wonder if you are taking bisphosphonates for your osteoporosis? Another Connect member, @sunnyflower has recently been struggling with whether to go back on them. They have caused her very significant pain in the past as a side effect but are supposed to make your bones less fragile I assume. I hope you do not have to take them.

One of the earlier posts in this discussion was interesting, where @sherlock says "I had 3 years of monthly treatments and didn't see improvement until after a year. I'm now in remission and just have pain associated with neuropathy. Diet is extremely important in controlling the symptoms. Eliminate sugar, dairy, gluten, red meat. Eat lots of greens, enjoy green smoothies, drink lots of water." Decided to pass this on in case you did not read it. Might be something to look into. But forgive me if this is something already obvious to you.

I truly hope something clicks for you. It's awful to live with such a condition. But you say you do have good people support in your life? If so, that is BIG. By the way, I have found that reading through historical posts from this forum can be very useful. Just put CIDP into the search window at the top of the page and start reading. Again, my very best to you. Hank

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@jesfactsmon

@txamo I wonder if you are taking bisphosphonates for your osteoporosis? Another Connect member, @sunnyflower has recently been struggling with whether to go back on them. They have caused her very significant pain in the past as a side effect but are supposed to make your bones less fragile I assume. I hope you do not have to take them.

One of the earlier posts in this discussion was interesting, where @sherlock says "I had 3 years of monthly treatments and didn't see improvement until after a year. I'm now in remission and just have pain associated with neuropathy. Diet is extremely important in controlling the symptoms. Eliminate sugar, dairy, gluten, red meat. Eat lots of greens, enjoy green smoothies, drink lots of water." Decided to pass this on in case you did not read it. Might be something to look into. But forgive me if this is something already obvious to you.

I truly hope something clicks for you. It's awful to live with such a condition. But you say you do have good people support in your life? If so, that is BIG. By the way, I have found that reading through historical posts from this forum can be very useful. Just put CIDP into the search window at the top of the page and start reading. Again, my very best to you. Hank

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Hello Hank and @txamo, just to clarify, I have never been on bisphosphonates or any osteoporosis meds. My endocrinologists have been trying to get me to take them for years as I have already broken 3 pelvic and one rib bones spontaneously but I am to afraid of the side-effects, some of which can be serious. Warm regards, Sunnyflower

Liked by lioness, Hank

REPLY
@rwinney

@txamo Hello. I've read your posts and cant bring myself to hit that little ♡ and "like" them. Simply because liking what you are saying just doesn't feel right. So, here I am wanting to let you know that I have deep fealt empathy for you and your chronic pain diagnoses. I'm very happy you received beneficial help with IVig for 5 years and were able to overcome being paralyzed. That is a miracle. It's time to brainstorm again however. I have small fiber polyneuropathy and tried lidocaine infusions for 5 months. Although they did not work for me, they do for some. Has your neurologist ever mentioned this treatment?

Ketamine infusions have greatly benefited some people. I recall a lady here on Connect being in a wheelchair and then being able to get out and walk with the help of Ketamine infusion. When I inquired about Ketamine with my neurologist I was told he does not provide the treatment nor does his affiliated medical college hospital, and that I'd have to pay out of pocket typically. I truly wish you the best of luck with forward progress and pain relief. – Rachel

PS: Wondering if you have ever been treated at Mayo Clinic?

Jump to this post

Hi Rachel and Hank, I have never been treated at the Mayo Clinic. I had an appointment the first year I was diagnosed and decided not to go. I then wanted to go a few years later and they would not give me an appointment. I was diagnosed and still see a Mayo trained neurologist. I am treated by a pain clinic for my chronic pain and have a nerve stimulator implant. It does not seem to be helping me much. I have not found anyone to give ketamine infusions. My pain doctor does not. I never heard of lidocaine infusions. Possibly my pain doc does them, but he has never mentioned them to me. I do get infusions for osteoporosis but I did not get one this year. It has helped with my bone density. My neuro has never mentioned a particular diet for CIDP. I have gained a lot of weight being so inactive. Hope this answers your questions.

Liked by rwinney, Hank

REPLY
@jesfactsmon

@txamo I wonder if you are taking bisphosphonates for your osteoporosis? Another Connect member, @sunnyflower has recently been struggling with whether to go back on them. They have caused her very significant pain in the past as a side effect but are supposed to make your bones less fragile I assume. I hope you do not have to take them.

One of the earlier posts in this discussion was interesting, where @sherlock says "I had 3 years of monthly treatments and didn't see improvement until after a year. I'm now in remission and just have pain associated with neuropathy. Diet is extremely important in controlling the symptoms. Eliminate sugar, dairy, gluten, red meat. Eat lots of greens, enjoy green smoothies, drink lots of water." Decided to pass this on in case you did not read it. Might be something to look into. But forgive me if this is something already obvious to you.

I truly hope something clicks for you. It's awful to live with such a condition. But you say you do have good people support in your life? If so, that is BIG. By the way, I have found that reading through historical posts from this forum can be very useful. Just put CIDP into the search window at the top of the page and start reading. Again, my very best to you. Hank

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Hank, I did get infusions of Reclast for four years. I am being treated at UTSW in Dallas. My last bone scan was much improved. I felt that I did not have a choice of not getting some sort of bisphosphonate because I had so many fractures.

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Hello txamo. It is wonderful news that your last bone scan was much improved. I too feel I don't have a choice about taking the medication since I've already fractured 3 pelvic, one rib and other smaller bones, spontaneously due to my daily Prednisone. Did you suffer any side-effects from Reclast? May I ask how much of an improvement you have? My recent scan showed I'm 13% worse in my spine and 14% worse in my hip since my 2018 scan. They said that anything more than a 2% change is "significant". My T-Score was -3.5, and I think -3.7 for spine and hip I believe. So scary! Warmest wishes, Sunnyflower

Liked by lorirenee1, Hank

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I forgot to add Hank in my reply above to you txamo. Here you go Hankster: @jesfactsmon, see my response to txamo

Liked by Hank

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@sunnyflower

Hello txamo. It is wonderful news that your last bone scan was much improved. I too feel I don't have a choice about taking the medication since I've already fractured 3 pelvic, one rib and other smaller bones, spontaneously due to my daily Prednisone. Did you suffer any side-effects from Reclast? May I ask how much of an improvement you have? My recent scan showed I'm 13% worse in my spine and 14% worse in my hip since my 2018 scan. They said that anything more than a 2% change is "significant". My T-Score was -3.5, and I think -3.7 for spine and hip I believe. So scary! Warmest wishes, Sunnyflower

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@sunnyflower

It's always hard to get test results that aren't good, isn't it, Sunny? No matter how positive our thinking is, discouragement happens. I'm surely sorry that your bone scans revealed so much deterioration. Life is unpredictable in many ways. In the middle of uncertainty, having a firm foundation makes it possible to keep going, knowing that you have resources available through the indwelling Spirit of God, who gives us peace that's beyond our understanding. Blessings and peace be yours tonight, Sunny.

Jim

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@jimhd

@sunnyflower

It's always hard to get test results that aren't good, isn't it, Sunny? No matter how positive our thinking is, discouragement happens. I'm surely sorry that your bone scans revealed so much deterioration. Life is unpredictable in many ways. In the middle of uncertainty, having a firm foundation makes it possible to keep going, knowing that you have resources available through the indwelling Spirit of God, who gives us peace that's beyond our understanding. Blessings and peace be yours tonight, Sunny.

Jim

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Thanks so much Jim. How kind of you to take the time. I'm getting ready for bed and am so blessed by your message. Yes, it is, without a doubt, the peace of God through Christ that surpasses all understanding that keeps me sane and joyful in the midst of the fires! I wish the very same for you! Peace for your soul and a very well-rested night! Sweet dreams my friend! Sunnyflower

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