Have you relapsed and recovered?
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September 13, 2020 at 11:14 am
I seldom have any luck getting responses on this site, but I’ll try one more time before I give up. Have you had CIDP relapses? How did your doctor bring you out of it? Did the relapse cause more irreversible nerve damage?
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September 13, 2020 at 12:09 pm
Oh, absolutely. Early on my Gamunex C wasn’t even working. I went a year and a half of 45 ml. And saw no improvement. Then I stopped and was treated for Lyme for 8 months. Finally the Lyme was cured, but the CIDP was worse than ever, to the point where I walked (barely) with a cane. I almost ended up in a wheelchair it got so bad. Finally my neurologist decided to step things up and increased the dosage of Gamunex. To 90 ml. Recently I had a big setback when I ran out of pain meds for 5 days. I went through Detox and that stressed me out so bad it took back the gains I’ve experienced where I felt like I did two months ago. I hope to regain my health, hopefully within 6 months. Not sure if my story qualifies as a relapse but definitely a setback.
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September 13, 2020 at 12:36 pm
Hi, Sandra.
Yes, I definitely had a relapse, having had my first attack in 2016, being totally symptom-free for two years and then had a worse attack in 2018.
The good news is that on my second attack, I knew what it was right away, so I drove myself to the ER and was treated with massive doses of IVIG. I got a new neurologist, and he put me on a regimen of recurring large doses of IVIG (at home) along with taking 60mg of Prednisone daily. As my symptoms subsided, the amount of Predisone was reduced (I’m now down to 2.5mg a day), and in 2019, I switched from IVIG to SCIG.
I have not had any issues since, and it seems that whatever nerve damage I sustained has all fully reversed itself.
Good luck to you!
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September 13, 2020 at 8:19 pm
Had 2 relapses recover to appoint but have less leg/foot function.
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September 14, 2020 at 9:16 am
I was symptom free for years! I was on a maintenance dose of IVIG every 5 weeks of 35 grams. My neurologist thought maybe I was in remission so we decided to try and push the infusions out to 6 weeks and see what happened. I knew before I made the 6 weeks that I was not in remission! My symptoms of CIDP came flying back. I was miserable and very scared too. We had to drop me back down to every 2 week infusions. I stayed at the 35 grams but had to stay at 2 weeks for a few months.. then went to every 3 weeks… and then every 4 weeks. I had to stay at every 4 weeks for a long time. On my next infusion I am going to try and push back out to every 5 weeks. With any luck I will get there and be able to stay there symptom free. I don’t think i had any new nerve damage caused by the return of symptoms because we jumped right on increasing the infusions. But I now know that I probably will not go into remission with IVIG treatment because I have been on IVIG for 11 years now. So if i want to try and knock this into remission i have to try a different treatment route such as high-dose steroid infusion push or one of the immune suppression drugs. At this point, since I get good results with IVIG i don’t want to switch. Why fix something if it isn’t broke! Good luck to you.
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September 14, 2020 at 12:15 pm
Thanks so much for the responses. I’ve always known CIDP is a remitting/relapsing disease, but I’ve never really had a remission and relapsing is terrifying. My neurologist, who is considered one of the best in our area, got the idea that my worsening weakness and nerve pain, etc., was all due to my lower back problems, and for the better part of a year he’s done nothing to help me. Now I am so sick that he can’t deny that my CIDP has worsened. He thinks my body has gotten used to Gamunex and switching to Privigen might help. I start Privigen next week. I am in dreadful condition and feel as if I should be getting intensive treatment of some kind, but the doctor wants me to get Privigen once a week and wait a couple months to see if it helps. I feel like I’m back at square one and don’t know what to do.
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September 14, 2020 at 12:39 pm
Hello Sandra. So sorry to hear of your relapse.
I have been reading the stories on this site since my first onset Oct 2016, but this is my first post. I have been contemplating posting my story for quite a while & I will do it in the near future as we all seem to have so much in common, yet all so different. I am a 64 year old male and was 60 at the first onset.Early Oct 2016, severe numbness and uncoordination, went to GP, then 10 days later went to ER as I was going downhill fast. They figured I had GBS since I had a flu shot 10 days earlier. Received IVIG treatments then sent home.
Early Nov 2016, relapse. I knew it was hitting me hard again, so back to ER I go. Gave me plasmapherisis then loaded up again on IVIG. So here is my first relapse.
Late Nov 2016, relapse. This time I was in San Diego and my daughter is a physician at Scripps-Mercy so she hauls me in. This time I’m in for close to 4 weeks. GBS does not relapse like this, plus my symptoms were totally peripheral (hands, arms, legs & feet plus I could not walk nor stand on my own) so a ton of tests and CIDP is their diagnosis.
My wife sets me up at the Center of Excellence at Cedar-Sinai in Los Angeles. I stay on IVIG for another 4 months at home. The neuro doctor removes me from IVIG treatments for almost a year.
May of 2017 I feel really bad. Another relapse. Numbness, burning, trouble walking etc. So back on IVIG again every 3 weeks. I am still receiving them. Now though every 6 weeks.
I don’t know if any of this helps you Sandra. But as a (good) side note: I am in not too bad a shape. Especially if you look at me. I drive, can ride a dirt bike, can walk a couple miles and look fairly normal to most folks. Except for the occasional “drunken stagger” you wouldn’t know I am ill. But I will say that my hands don’t work properly, they are extremely numb and my feet are the same way. I have a lot of facial, eye & tongue numbness as well. The head & facial issue baffles my neuro doctor at Scripps as it does not “fit the criteria” of CIDP.
I wish you and everyone else here all the best. One of my best mental treatments is to keep myself busy. It helps a lot. Keeps my mind occupied and off the CIDP issue.
Take care everyone. And Jim thanks for all you do for this site and the folks posting.
-John
Acton, CA -
September 14, 2020 at 3:32 pm
JD — I have never been hospitalized for treatment. I started IVIG (Gamunex) in March 2017 and have been receiving it weekly ever since.I’m envious of all you can do. I had lost 80% of the nerve function in both legs before I was finally diagnosed, and I haven’t regained any of it. The doctors tell me I’m too old for nerve regeneration and will have to be satisfied with staying as I am. But now I’m markedly worse. I can’t walk any distance at all without a walker or cane, and when I leave the house I’m always in a wheelchair. I have no balance and have suffered some bad falls. Now I seem to be losing what little mobility I had. I wish you the best with your regimen and hope you can continue to walk,drive,and use your bike.
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September 14, 2020 at 4:09 pm
Any doctor that tells you you’re too old for nerve regeneration is a bad doctor. I’m 62 and my nerve are repairing themselves, with some help of course. Sounds like you need a new doctor. Your health is too important to waste time with bad doctors. The quicker the better, you need to find a better, supportive and more experienced doctor. Don’t give up just because your doctor has.
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September 14, 2020 at 7:57 pm
Typically, it takes around three years for the body to rebuild Myelin damage (as best it can) following GBS/CIDP. MS can halt the production of new Myelin and those patients may be unable to regenerate lost Myelin. In GBS/CIDP the Myelin Sheath can rebuild itself at the rate of approx. 1 millimeter a day. This is very slow and there has been little shown to speed up the process. Age does not stop this process but may slow it in some.
Several over-the-counter supplements can help boost our systems to rebuild Myelin. B12 is an important component in helping to regrow Myelin and repair neurological damage. Many doctors recommend high dosages to help treat CIDP and related conditions. I take B12 (Methylcobalamin 5000 MCG) every night along with Fish Oil (1400 MG + 900 MG Omega-3 fatty acid) and D3 (125 MCG/5000 IU) every morning. I had taken Alpha Lipoic Acid with Grape Seed Extract (1200MG – 1800MG daily) which helped me a few years ago. Other supplements are covered here:
Axonal damage, depending on severity, may not be something our bodies can easily reverse. Here are some articles that address what may be done to help Axonal damage:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5243173
https://www.sciencedaily.com/releases/2017/03/170308131202.htm
https://en.wikipedia.org/wiki/Neuroregeneration -
September 17, 2020 at 12:17 pm
I had lost 80% of the nerve function in my legs before I was even diagnosed — and I also have serious axonal damage, which is unlikely to ever be reversed. I have been told by three long-experienced, highly rated neurologists that the older a patient is, the less likely it is the myelin damage can be repaired. If I were in my twenties or thirties, I would have a chance of regaining a relatively normal life. I’m in my 70s with tremendous damage already done. I’ve been more or less holding steady on Gamunex since I started treatment in March 2017. The amount of IVIG has been gradually increased to 50 grams a week. Now I have apparently stopped responding to it at all. I start Privigen next week. If that doesn’t help, plasma exchange is probably the next step. My symptoms of relapse/regression are extreme weakness in my lower legs, a return of numbness/tingling/shooting nerve pain in my hands and feet, an overall level of fatigue worse than anything I’ve ever felt. I feel as if I’m barely living anymore. COVID and the closure of doctors’ offices kept me from persuading my neurologist of the seriousness of what was happening. He couldn’t do a neurological exam on the telephone. So I’ve grown sicker and sicker. If I went to an ER, they wouldn’t have the slightest idea what to do. They wouldn’t know what CIDP is.
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September 18, 2020 at 12:26 pm
Sandra: I received an email with your response but the post is not listed here. Post #117730.
I wanted to add a few things to my prior post and will try to do it on my break today.
-John -
September 19, 2020 at 8:57 pm
I don’t know how my response went to email — sorry! I said that I have axonal damage as well as severe myelin damage. The doctors I’ve dealt with don’t seem optimistic about much improvement, and they say my age is a major factor. My IVIG has been gradually increased from 25 grams a week to 50 because I keep backsliding, becoming weaker. My balance is worse than it has ever been. My EMG now is pretty much the same as the first one I had in early 2017. I have had excellent doctors, but my body just doesn’t cooperate.
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September 19, 2020 at 9:23 pm
Sandra, is there a Center of Excellence in your area?
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September 21, 2020 at 2:30 pm
Hello Sandra & sorry for the late reply. Not sure if this will help out but here is more to my story.
Oct 2016; I woke up one morning and my hands were numb. I had no idea what was up. I immediately thought stroke so I called my GP. He got me in right away and sent me out for a CT scan. No stroke shown. My GP had sent me to a neuro doctor and he did a preliminary and asked me to come back in a week if no improvement.
I am home and over the next 3-4 days my hands were not working properly and feet getting numb.
I could not fasten my pants, was stumbling around like a drunk and obviously concerned. I had taken myself off from driving, so I was getting a ride to the office.
After about the 5th day at work I almost fell over and head/face was getting extremely numb as well. I figured there was something serious going on so I had an employee take me to ER. My physical condition was deteriorating rapidly. Crazy fast.
This was the first of 3 ER trips.
So, where I’m going with this is I seriously believe me heading to the doctor so early was a tremendous benefit in my outcome and current state. Of course I did not know this at the time as I had no idea what was going on. I got lucky and made a good decision.
I am still on IVIG. Down from 90 grams every 3-weeks, to 60 grams every 6-weeks. How is it working out? The jury is still out on that really. Mornings are rough as all my tendons are stiff as a board, feet, lower legs, hands, forearms, face, eyes & tongue are numb and burning. After 600mg Gabapentin ( I take 1500mg daily) and I walk & stretch a bit I loosen up.I really hope your body settles down. I am still waiting for that. I told nuero that I can live with what I have. Please don’t let things go further down hill. I have my fingers crossed.
Jim mentions above about going to a center of excellence. I go the Cedar-Sanai Center of Excellence in Los Angeles. I also still see my local neuro doctor. I was glad to go see the Cedar doctor for a 2nd & well educated opinion. In truth both neuro doctors did the same treatments. But it is sure good to know that my local neuro doctor and myself did the right things.
I may still put my whole story in it’s own post here soon as it’s kind of long and has some screwy twists prior to the onset CIDP.
Good luck to all. I think we all kind of need it.
-John -
September 21, 2020 at 2:54 pm
Jim-LA — I live in the Washington, DC metro area. I know that Johns Hopkins, 40 miles up the road in Baltimore, is one of the major research centers for CIDP.
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September 21, 2020 at 3:15 pm
JD — Sounds like you’re no better off than I am as far as “recovery” is concerned. I have discovered over the past three to four years that some people do not improve on any treatment. They either remain where they are or they get worse and end up in wheelchairs. I was pretty far gone by the time I was diagnosed, and the first EMG I had showed axonal damage and 80% loss of nerve function in my legs. My diagnosis was slow because in summer of 2015 I suffered major fractures in my pelvis.(My sacrum is now held together by a mess of screws and bolts.) I was told I would be “back to normal” in three months, but I never recovered. I believe the fractures and the surgery/anesthesia (which lasted half a day) triggered CIDP. I grew weaker, lost my balance, started falling, developed terrible nerve pains in my feet and legs. My doctors blamed all of it on the fractures and the nerve damage they caused in my pelvis. I didn’t believe that and began researching. I diagnosed myself, and demanded a referral to a neurologist. On my first visit — a year and a half after my fractures — the neuro said I had all the symptoms of CIDP. An EMG a few days later confirmed severe nerve dysfunction. I can’t even let myself wonder how much better off I would be if I’d been diagnosed earlier. It’s too distressing to think about. I was told it would take about three years to feel real improvement, but that has never happened. I’ve had several relapses in less than four years. My current neurologist, who is considered the best in the area, says I am not responding anymore to Gamunex. I start Privigen tomorrow. I think it’s too late for that simple change to help.
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September 21, 2020 at 6:30 pm
Sandra, it looks like the closest Center of Excellence to you is this one. I recommend you make an appointment to see Dr. Cornblath.
JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE AND HOSPITAL
Address
601 North Wolfe Street
Baltimore, MD 21287
United States of AmericaWebsite http: //www.hopkinsmedicine.org
Phone Information Main Phone 410-955-2229
Fax Information Main Fax 410-502-6737
Appointments – Dr. David R. Cornblath 410-955-2229Doctors Adult Care:
David Cornblath MD.,
Vinay Chaudhry MD.,
Brett Morrison MD.,
Ahmet Hoke MD.,
Michael Polydefkis MD. -
September 21, 2020 at 10:24 pm
Jim-LA, yes, I know about Hopkins. I would be given an appointment sometime well into next year, long past the time when it would do me any good. It’s very, very difficult to get an appointment there.
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September 22, 2020 at 12:26 pm
In addition to Hopkins there are two Centers of Excellence in New Jersey, two in Philadelphia, and one in Virginia. They are a little farther but may be well worth the drive if they can help you. Here is the link:
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September 22, 2020 at 7:55 pm
Why aren’t more people here using Cellcept as a solution? I take 1000 mg 2x a day. The drug works on your system daily vs IVIG which from my point of view isn’t going to be as strong on day 30 as it was day 1. I haven’t heard recovery stories of people on IVIG but I have with Cellcept. I read what happened to you Sandra and it is upsetting and I can only imagine what you’ve been through. I was lucky similar to JD to get on it early. With your surgery and expectations, I can imagine it would be very difficult to guess you had an autoimmune disease, as did I which was caused by shoulder surgery.
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September 27, 2020 at 11:06 am
I receive 50 grams of IVIG once a week. Your doctor can adjust your schedule to avoid the slump. My problem is that my body stopped responding to Gamunex. Maybe I’ll do better on Privigen, but I’m not optimistic. I don’t want to take an immune system suppressant. There are many reasons why a lot doctors won’t prescribe them.
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September 30, 2020 at 2:53 pm
Chemo can cause very serious peripheral nerve damage. (I have several friends who have recovered from their cancers but are now tormented with chemo-induced peripheral nerve damage in their feet and legs.) So why would anyone want to take CellCept and rituxin, which are used in chemo cocktails to treat cancer? My first neuro, now retired, refused to use either because he believed that in the long run they could cause additional damage to an already damaged nervous system.
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September 30, 2020 at 6:57 pm
I have no direct experience with CellCept (mycophenolate mofetil) but others have used it with success. CellCept is an immunosuppressive agent. It weakens your body’s immune system, to help keep it from “rejecting” a transplanted organ such as a kidney or liver. Organ rejection happens when the immune system treats the new organ as an invader and attacks it. So, it works a bit like Prednisone and other corticosteroids. There are side-affects for some.
Rituximab is a genetically engineered monoclonal antibody that targets a specific protein, known as the CD20 antigen found on the surface of normal and malignant B-lymphocytes. It coats those B-cells & T-cells so that natural killer cells recognize the marked cells as invaders. Then the body’s natural immune defenses are recruited to attack and kill the marked B-cells.
Rituxan depletes B-cells, which can cause swelling and joint damage in people with autoimmune disorders, such as rheumatoid arthritis. It also works by depleting B-cells in patients with other autoimmune disorders such as CIDP. By reducing the number of B-cells, Rituxan helps limit the production of auto-antibodies.
My treatments with Rituximab were responsible for putting my CIDP in remission and allowing my body to repair some of the nerve damage that was caused by my GBS/CIDP/MFS.
The side-affects I experienced are listed here:
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