CIDP and me

Most people seem to improve on IVIG. At first I didn’t think I did, but lately I can tell that I do see an improvement. What you will experience will depend on may factor.

You have already received one round of treatment. What was the amount you received? What were the results? The the dosage makes a difference. If there were no effects or improvements for the first round of IVIG I would suggest that you might want to see about having the dosage increased.

From the degradation to your nervous system that you have described the road to recovery may take a while.

Hi,
I’m also new to the forum. Although I’ve been following it for awhile, I just recently joined. I was initially diagnosed with CMT in ’05, a demyelinating genetic disorder with no treatment. Then in ’08 it was decided that I have CIDP, and I was started on IVIG. Last year Lewis Sumner Syndrome was added to the diagnosis. My symptoms progressed very slowly, at first just very slight weakness in my left thumb and index finger. At this point I have no function in my left hand, minimal use of my right hand, and very, very weak right arm. (I do the one finger hunt and peck, also. The eraser end of a pencil stuck between my fingers works well, too.) I’m very fortunate that my legs still work fairly well. Steps and hills are difficult, but flat surfaces I manage well.
At first I was getting IVIG 4 consecutive days every 4 weeks. I noticed some improvement at first, but then nothing noticable. I was looking for miracles. I figured out when it was stopped after 6 mo, that it was keeping me stable. I went downhill fairly quickly. We tried a round of steroids for 5 months, a complete disaster :eek:. My old neurologist moved away, and my new one is more aggressive. I get IVIG 2x/week and Cell Cept. The improvement isn’t real noticeable, but I do have the return of some reflexes and slightly improved sensation in my fingers.
I think everyone responds differently to treatment. It seems like some people do improve significantly with IVIG. Also, the sooner it’s started, apparently the response is better. I lost about 3 years with the CMT diagnosis before IVIG was started.
It’s a tough disease to live with, not knowing what muscle is going to go next or what shape I’ll be in 6 mo., or a year from now. I take one day at a time, and take great joy in tiny miracles, whether it’s the return of a reflex, learning a new way of doing something I didn’t think I could do anymore, or sitting outside on a beautiful day. I’m very grateful that I can still manage to live on my own. When the day comes and I can’t make it on my own anymore, I have a great suppot system and we’ll work something out. I have a lot to be thankful for despite this crazy disease! Life is good!
Good luck with the IVIG. I’ll pray for BIG miracles for you. 🙂

[QUOTE=brneyedgrl]Hello, i am new to this forum …. I would like 2 know what kind of results to expect from ivig?[/QUOTE]

Welcome to the forum. I’m sorry to see you here under such circumstances. Your story sounds much like my own. I was not diagnosed with CIDP during a hospitalization or any of the follow up neurologist visits. From the time I first experienced symptoms to the time I was diagnosed was about 2 years.

As far as what to expect from IVIG….that can really vary a lot. It depends on each person and what their specific case is like. It also depends how much, if any permanent damage has been done (like axon damage in addition to demyelination).

I had an upper extremity paralysis that I was about 5 months into when I was diagnosed and started on IVIG. It took about another 4-5 months for me to regain use of that extremity, but I did regain 99% of it. Still have varying degrees of sensory issues but can function much better.

Unfortunately, only time will tell, some people respond much quicker and more fully than I and others still have no change and go on to other treatments like plasma exchange, and/or steroids, immunosuppresants, which you may also already be on.

What is the dose and frequency of your IVIG treatments?
How old are you (if you care to share)?
Have you been on any steroids, etc?

Hope to see you post more!
jdunk

[QUOTE=brneyedgrl]I am 32 years old. I am not sure of the dosage of the ivig, but i recieved the first treatment over a period of five days. I am supposed to start predn. 5 mg on monday. I take Lyrica and baclofen for mucsle spasms and pain.[/QUOTE]

Hi again,
I am sorry to hear that you have experienced such a life changing event at 32. I know it’s hard, but you can read here and come here for some support from many people that understand. Know, that here, you are not alone!!
I think I was about 38-39 when finally diagnosed.

That is very common in other parts of the country from me for loading doses to go over 5 days.
Do you know when your next IVIG treatment (tx) will be? In how many weeks, how many days it will be, or what brand of IVIG you are on? It would be helpful at your next infusion if you could find out how much you are on at each infusion. It is based on body weight, typically 1-3 grams per kg of body weight and then divided into 2 days (typically) for subsequent infusions.

I don’t think I saw much improvement in my symptoms for 3-4 months, but then picked up the pace the last 2 months. I have been on IVIG every 4 weeks for almost 7 years, and recently changed to every 2 weeks for the last 4 months. I am doing better physically on the every 2 week dosing as the drug never has time to fully wear off before I have another infusion. A dose lasts anywhere from 16-28 days, depending on the person, the dose and the brand.

It sounds like you have a pretty good medication combo going on now. Lyric did wonders for my symptoms and I felt great on it, but unfortunately gained 20+ pounds in 8 weeks so I was taken off of it. Fluid retention on Lyrica is common, but I didn’t have that. I had fat retention 🙁 .
5 mg of pred is a nice low dose to start on and see how much benefit you can get from that.

Feel free to PM me if you have any specific questions or want to talk about something. Everyone here has different experiences to contribute.

Is your Dr a specialist in CIDP? I am lucky that I live near one of the “7 centers for excellence in CIDP”. My Dr is the head of the neuropathy dept and on the Foundations board for CIDP.

Take care,
jdunk

May I suggest that you schedule an appointment with one of this Foundation’s Centers for Excellence? These centers have applied for, and specifically been approved, as neurological centers of excellence. To my knowledge, all of them feature doctors completely familiar with CIDP and GBS. A proper diagnosis is vital to proper treatment. Different experts have different philosophies of treatment, but all are expert in the disease. Even if the visit is a one time consultation, you can learn enough about your condition and treatment to help your local doctors properly treat you. In my experience, the normal neurologists at a normal community hospital lack the understanding or expertise to properly diagnose these diseases. I know that is a broad generalization, but as you read more and more posts on the forum, you will see that is true. Many neurologists simply do not excel with CIDP or GBS. I have personally been diagnosed and treated at Johns Hopkins in Baltimore, but there are at least 7 such Centers for Excellence in the country, and perhaps there is one closer to you.

As other posters have said, everyone responds differently. I started out with the 5-day loading phase, with no improvement. The next followup treatment 3 weeks later still provided no improvement. It was not until the morning following the next followup treatment 3 weeks after that that I started to see improvement. Within the next 3 treatments (9 weeks) my motor nerves were almost back to 100% (although the sensory nerves were not). My doctor discontinued IVIG treatment over a year ago, after around 18 months of treatment. My motor nerves have been at 100% for quite some time now, and my sensory nerves at around 95%-98%. I truly believe I am one of the very lucky ones, but there are others for whom nothing seems to work well. Just read other posts on the forum and you will see. The critical thing is to get an accurate diagnosis and begin proper treatment as soon as possible. The longer you wait for effective treatment, the higher risk you run of permanent damage to your nerves.

[QUOTE=ajgeb]May I suggest that you schedule an appointment with one of this Foundation’s Centers for Excellence? These centers have applied for, and specifically been approved, as neurological centers of excellence. To my knowledge, all of them feature doctors completely familiar with CIDP and GBS……..
[/QUOTE]

Actually, the “Seven Centers for Excellence” are NOT neurological centers of excellence. They have been chosen specifically for their excellence in the diagnosis and management of GBS & CIDP & their variant inflammatory neuropathies.
Also, there are only 7 in the world right now, not “country”.