First time relapse(?)

General General CIDP Discussion
1

Hi everyone,

I fell sick with CIDP in March, 2010. It wasn't until July that we found a treatment that worked-80 mg Prednisone, Cellcept, and IVIG. At that time I was completely paralysed in my legs and my hands and arms were at about 75%. I made a pretty complete recovery-my arms and hands are back to before and I walk pretty well.

In July this year, after six months without IVIG and nearly a year on a maintenance dose of Prednisone, we halved my Cellcept. According to my phyusical therapist, i am continuing to gain strength in my legs.

However, for the last five days, my legs have been tingling right above the kneecaps. It feels exactly like the pains I had in 2010 when the CIDP started. I am really freaked out, because I worry this is the sign of a relapse. I wanted to ask you, those of you who have been through relapses, was this how they started? How was the severity?

Most importantly, what signs definitely told you there was a problem? Thanks a bunch.

2

Hi! Generally, I wait until I show a few symptoms before I conclude that I'm at the beginning of a relapse. CIDP can spike up just a little and then die back down. I'm not saying that's the case, but that it's a possibility. When I had my first relapse, I called my neurologist. I figured he'd know better than me if I was or wasn't. Another reason to call the neurologist is that there is likely a waiting list to see your doctor, so-to-speak. If you have to wait two weeks until you get to see him/her, your situation will likely get better or worse. If it gets worse, you are already in line. Everyone has their own list of symptoms that let's them know. I've had several relapses and every one scares the crap out of me. Once I begin recovery, I'm good. Currently, I'm having a relapse. I wish you the best of luck!

3

Hi Michael,

The realization of CIDP is that it is chronic progressive, therefore at some point it wouldn't be uncommon to relapse which can be caused by certain triggers (in my case stress, humidity and stimulants) but obviously in everyone's case the triggers can vary. The positive side of this, is that if you are feeling tingling and similar symptoms to the onset, you can immediately increase your combination of medication (in my case a start of 40mg predislone does the trick) and your body should respond well and then you will need to keep up your maintenance dose as per usual. The 80mg dose you were initially given was to blast the condition due to a long period of being undiagnosed and consequently much nerve damage and paralysis.

I am 27yrs old now and I was diagnosed in 2008. Obviously living with CIDP is tough and can seem daunting, but I work full time, have a 4yr old son and live a good quality of life. I only use Predislone to manage this condition and have just recently engaged in an 'Anti-Inflammatory' diet which is gluten free and organic where I can. This works especially well for a myriad of reasons- not just to combat the inflammation, but mentally and physically. I also take Omega 3 capsules 2 times a day which is known to help and lower the use of anti-inflammatory drugs. I am feeling great and hopefully can keep the condition at bay.

Well- I hope this helps. Stay positive, we can fight this :)

4

I agree with both responses. I would call your doctor now because there usually is a lag time to get an appointment but I would let the office know what is happening. By the time they get back to you, you should know if the symptoms are becoming worse. Your doc may even increase your Pred until you see him. I would definitely give it a week or so but not much longer before increasing Pred and I wouldn’t do that without your docs knowledge. You want to see if it is the start of a relapse before increasing Pred for two reasons. One, you will know for certain that these are your initial indicating symptoms for relapses and two Pred is hard on the body so use is sparingly. Just don’t wait too long because relapses can start and become severe quickly. I also have triggers, major stresses being my biggest one.

5

Luckily in Malta, healthcare is efficient. I have my neurologist's mobile number and call her as soon as I need advice. Because I do not respond well to IVIG and immunosuppressants, it's always the same routine for me- jump on a dose of steroids. But obviously, it's at your doctor's discretion according to your tolerance. And as mentioned above, steroids can eventually take their toll on your body, hence my new diet in an effort to reduce relapses :)

6

How do you put CIDP into remission in the first place. I was diagnosed in April 2011 and have had IVIG every 21 days ever since. The IVIG keeps my CIDP at bay as long as I keep getting my infusions. But if I stretch too much time between IVIG I start to get tingling and weakness in my legs. So I keep on my schedule of every 21 days up to 28 if needed. How will I know if I go into remission? Is it possible to go into remission when IVIG is your main treatment or do you need to be on Pred and immuno supressants to go into remission? Those drugs scare me. I was on Pred for about a month in the beginning and I HATED it. I was jittery, couldn't sleep, felt angry and iritated all the time. I have not tried anything since the beginning once started IVIG since I have such good results. But I would love to go into remission for extented periods of time.

7

chirpybirdy, in my case and many others, it doesn't go in to remission, but rather, it increases and decreases in intensity. I've always thought of it like a graph running from 1 to 10. I've been as high on the graph as intensive care takes you, yet I've gone through many periods where it was a '2'. Personally, I'd like to try your treatment for a while. Although I've had IVIG infusion several times, I've never had it back to back to back. Instead, I end up with plasmapheresis, prednisone, and Imuran. Have you guys noticed just how different our treatments are?

8

Thanks! I had an appointment for next week already, so we shall see.

JB said:

Hi! Generally, I wait until I show a few symptoms before I conclude that I'm at the beginning of a relapse. CIDP can spike up just a little and then die back down. I'm not saying that's the case, but that it's a possibility. When I had my first relapse, I called my neurologist. I figured he'd know better than me if I was or wasn't. Another reason to call the neurologist is that there is likely a waiting list to see your doctor, so-to-speak. If you have to wait two weeks until you get to see him/her, your situation will likely get better or worse. If it gets worse, you are already in line. Everyone has their own list of symptoms that let's them know. I've had several relapses and every one scares the crap out of me. Once I begin recovery, I'm good. Currently, I'm having a relapse. I wish you the best of luck!

9

This was very helpful-perhaps an anti-inflammatory diet should be my next hobby.

Laura said:

Hi Michael,

The realization of CIDP is that it is chronic progressive, therefore at some point it wouldn't be uncommon to relapse which can be caused by certain triggers (in my case stress, humidity and stimulants) but obviously in everyone's case the triggers can vary. The positive side of this, is that if you are feeling tingling and similar symptoms to the onset, you can immediately increase your combination of medication (in my case a start of 40mg predislone does the trick) and your body should respond well and then you will need to keep up your maintenance dose as per usual. The 80mg dose you were initially given was to blast the condition due to a long period of being undiagnosed and consequently much nerve damage and paralysis.

I am 27yrs old now and I was diagnosed in 2008. Obviously living with CIDP is tough and can seem daunting, but I work full time, have a 4yr old son and live a good quality of life. I only use Predislone to manage this condition and have just recently engaged in an 'Anti-Inflammatory' diet which is gluten free and organic where I can. This works especially well for a myriad of reasons- not just to combat the inflammation, but mentally and physically. I also take Omega 3 capsules 2 times a day which is known to help and lower the use of anti-inflammatory drugs. I am feeling great and hopefully can keep the condition at bay.

Well- I hope this helps. Stay positive, we can fight this :)

10

Since I posted, I have been having a lot of trouble balancing also.

Thank you for your responses; I feel a ton better. I will see my neuro next week, so we will see where I am.

CIDP is a weird illness. If two people have the same symptoms, the same treatment, and the same response to treatment, once of them doesn't have CIDP.

I say this all the time, so why break tradition: I had five different neurologists before I found one that helped. The last one's advice to me was to try to get into a stem cell trial and buy a wheelchair van. That is why 6 is my new lucky number.

11

Sorry, I was not clear. Neuro # 5 was.the one that suggested I get a wheelchair van. Neuro #6 was the one who correctly diagnosed me and got me going. I found her through Google, but I had to wait 3 months to see her! Her name is Dr. Dolly Boughaba, she no longer is with UC (Cincinnati), but is still in the area.

I had one neurologist openly mock me for looking things up on the internet.

12

Two comments regarding the above discussions:

1. I disagree with the statement by mdolich that "all the IVIG does is suppresses the immune system so it doesn't attack the nerves, allowing the nerves a chance to regenerate." IVIG actually strengthens the immune system with respect to fighting infections, which is its chief function. I've been taking IVIG to strengthen my immune system for more than 11 years because of a primary immune deficiency disease. On the other hand, steroids, CellCept and many other meds for CVID do suppress the immune system and increase the chances for infection.

2. There isn't much scientific data indicating the benefits of diets and supplements on CVID. That's probably because the pharmaceutical companies don't want to pay for expensive studies when they can't patent foods or supplements. However, there is a clinical trial using the supplement lipoic acid for treating CVID. For further info on this see: http://clinicaltrials.gov/ct2/show/NCT00962429?term=CIDP&rank=7

13

IVIG adheres Antigens and blocks antibodies that incorrectly attack our myelin sheath outside nerve axons. Remission is tricky and if you have been unable to achieve prolonged remission using only IVIG it may be time to consider immunosuppressants. There are many and yes they can be scary. As with all medications, they can have adverse effects. Imuran, Cellcept, and Rituxan are a few that I have tried. The goal with these is to try to extend the need of IVIG beyond 3-4 weekswheele maintaining the slowing of demyelination. I am heading to Chicago Northwestern this week for SCT under Dr. Burt’s NIH approved study. Hopefully, to have long term remission and maybe cure. It is an option to consider carefully. It has been shown to reduce or eliminate the need for iVIG while being symptom free for years. It does have risks but someone like me who has failed traditional therapy, it is hope that I can beat this disease. If you would like more info, just email me at ■■■■■■■■■■■■■■■■■■■. Mary B

14


Michael Williams said:
Sorry, I was not clear. Neuro # 5 was.the one that suggested I get a wheelchair van. Neuro #6 was the one who correctly diagnosed me and got me going. I found her through Google, but I had to wait 3 months to see her! Her name is Dr. Dolly Boughaba, she no longer is with UC (Cincinnati), but is still in the area.

. Just to let you know, I grew up in Cincy. So if you need help there, let me know. I will find someone who can help you. Mary B

I had one neurologist openly mock me for looking things up on the internet.

15

Bravo mdolich! It couldn't have been explained any clearer or more accurately!

mdolich said:

<--- Collins Cobuild English Dictionary --->

suppress

sup.press

suppress suppresses suppressing suppressed

1. If someone in authority suppresses an activity, they prevent it from continuing, by using force or making it illegal.

...drug traffickers, who continue to flourish despite international attempts to suppress them...

...nationwide demonstrations for democracy, suppressed after 7 weeks by the army.

VERB: V n, V-ed

2. If a natural function or reaction of your body is suppressed, it is stopped, for example by drugs or illness.

Example: The reproduction and growth of the cancerous cells can be suppressed by bombarding them with radiation.

VERB: be V-ed

2. How does IVIG work?

For immune deficiency where the body does not make enough antibodies, IVIG supplies them. For autoimmune disorders like GBS & CIDP, there is a abnormal autoantibody being formed which is inactivated by IVIG.

Basically thats what IVIG does to our immune system for those of us with and Autoimmune disease like GBS, CIDP, MMN and other autoimmune variants. It stops (or inactivates) or slows down the immune systems attack on the nerves thus Surppressing the immune system.

I hope this clears up what I was trying to get across, I'm sorry if there was a miss understanding.

16

There was no misunderstanding on my part. There was a misstatement on your part. You should have said that IVIG suppresses the autoimmune attack on nerves, not that it suppresses the immune system.

17

I know im new here but i just want to say that mdolich is right. my doc even told me the same thing when i started to get ivig. in fact he told me exactly that, that it would supress my imune system so that it would stop eating at my nerves. i found this that my doc gave me, it even says that it supresses the imune system. i hope i can paste it ok. i'll try.

Intravenous immune globulin effective treatment for GBS, CIDP

Mar27 2012) Written by admin

Intravenous immune globulin (IVIg) is an effective treatment for certain disorders of the nerve and muscles, including Guillain-Barré syndrome (GBS) and a form of neuropathy called chronic inflammatory demyelinating polyneuropathy (CIDP), according to a guideline issued by the American Academy of Neurology.

IVIg is a type of immunotherapy that fights the misdirected immune system. It is not well understood exactly how IVIg works, but it likely suppresses or regulates an overactive immune system. Immune globulin is a protein in human blood that likely links itself with antibodies or other substances directed at the nerve.

According to the guideline, strong evidence shows that IVIg effectively treats Guillain-Barré syndrome, a rare disorder in which the body’s immune system attacks the peripheral nervous system, causing tingling and weakness in the arms and legs. The evidence shows that IVIg works as well as the treatment called plasma exchange to treat GBS.

Strong evidence also shows that long-term use of IVIg can help treat CIDP, which is the chronic counterpart of GBS and can affect nerves in the arms and legs and other parts of the body.

“Serious side effects are rare with IVIg, but there is a risk of kidney failure and a condition that causes the blood to be more likely to form clots,” said guideline lead author Huned S. Patwa, MD, of Yale University and the VA Connecticut Healthcare System in West Haven and a member of the American Academy of Neurology. “It is important to work with your doctor when deciding whether to use IVIg for a neuromuscular disorder.”

The guideline also found that IVIg is effective in helping to treat moderate to severe forms of myasthenia gravis and a rare condition known as multifocal motor neuropathy. It may also be helpful in treating neuromuscular disorders known as nonresponsive dermatomyositis and Lambert-Eaton myasthenic syndrome.

18

The purpose of the immune system is to protect the body from pathogens, malignant cells and other foreign substances. IVIG strengthens the body's ability to carry out these functions. Therefore it's incorrect to say that IVIG suppresses the (entire) immune system. It suppresses only the autoimmune aspects of the immune system. Is this relevant to people with CIDP? Yes. Most meds for CIDP do suppress the immune system, making the patients more vulnerable to infections. CIDP is an exception. It actually reduces the likelihood that CID patients will become infected. Knowledgeable authorities may have said that CIDP suppresses the immune system, but the context of such statements needs to be considered.

19

i may kicked out for saying this but "YOUR A MORON". my imune system is going 100 miles and hour so they give me imuneglobin to stop it or slow it down from eating my nerves. i've read some of your posts and you must be a hypercondreic, you claim to have every disease under the sun. are you mister know it all? i mean your telling everyone that all are neurologist are wrong and that your the only one right!!!!!!!!. i may not be very smart but when i read that it supress the mune system then thats what it does. this was writen by neurologist. aqnd it didn't say that cidp surpresses the imune system, it says IVIG supresses the imune system!!!!. can someone on this site please kick this moron out of this group?
JonJ said:

The purpose of the immune system is to protect the body from pathogens, malignant cells and other foreign substances. IVIG strengthens the body's ability to carry out these functions. Therefore it's incorrect to say that IVIG suppresses the (entire) immune system. It suppresses only the autoimmune aspects of the immune system. Is this relevant to people with CIDP? Yes. Most meds for CIDP do suppress the immune system, making the patients more vulnerable to infections. CIDP is an exception. It actually reduces the likelihood that CID patients will become infected. Knowledgeable authorities may have said that CIDP suppresses the immune system, but the context of such statements needs to be considered.