But will it be read?

General New Articles and Research - CIDP
1

A great article that covers SO much about IvIgG.

http://onlinelibrary.wiley.com/doi/10.1002/mus.24526/pdf

It is encouraging to read that science is working the CIDP/MMM/GBS chemistry.

Long story short: Article is saying that deylinization might not be the problem after all, that the Node of Ranvier may be the culprit.

I think the standard one treatment a month for CIDP of IvIG is the gold standard for most neuros, but everybody and every body is different.

2

I recognized that, for patient on maintenance IVIG therapy, an infusion would not improve neuropathy in only a few days if the mechanism is remyelination. I came up with my own theory about this, which I expressed in a Living with CIDP message which I've pasted below. While it's not as sophisticated as the Node of Ranvier theory, it might be more correct. Also, it now takes longer for me to see an improvement after an infusion. I believe this began after I started taking alpha lipoic acid.

<http://www.livingwithcidp.org/profile/JonJ&gt;Permalink <http://www.livingwithcidp.org/xn/detail/6385450:Comment:21670&gt; Reply by JonJ <http://www.livingwithcidp.org/forum/topic/listForContributor?user=1l8m6xpx5oqch&gt; on August 11, 2012 at 6:21pm Delete

Like Uncle Bill, I usually see an improvement in my neuropathy shortly after an infusion. Therefore, I assumed that the IVIG from a particular infusion kicked in a few days after that infusion. However, that assumption appears to be incorrect, at least in my case. I got permission for an experiment when I was getting infusions every other week. I moved up a single infusion by one week, which would result in unusually high immunoglobulin levels in my blood. I expected to see some improvement from this experiment a few days after the infusion that I moved up by one week. I did see a big improvement, but it took more than three weeks for the improvement to appear. Apparently, it takes a while for the myelin to grow back. When I got an increase of about 4% in dosage (remaining on a two week schedule), I didn't see the improvement in my neuropathy for more than four weeks. I think that the improvement can be observed earlier if the increase in blood immunoglobulin is larger. I suspect that, if I missed an infusion, I would still see an improvement in my neuropathy a few days after the normal infusion date. I don't think it's at all surprising that it would take more than two infusions and a few days to see an improvement from IVIG.
Jon

3

SEE PAGE 25, CONCLUSION ... more of focus than structural damage (remyelization)

Recent studies of the immunology and electrophysiology of CIDP and MMN suggest that
much of the morbidity and disability in these conditions is caused by readily-reversible
functional effects of autoantibodies rather than more slowly repairable structural damage.
18, 21
These results serve as a foundation for understanding clinical observations of rapid responses
and “wear-off” effects with intermittent IVIG bolus therapy. Together, these observations
suggest the hypothesis that infused antibodies in IgG actually compete with pathologic
autoantibodies. Observations that dosing of IVIG as often as every 7-10 days or the use of SCIG
to continuously maintain high steady-state IgG levels may be preferable to the periodic

extremely high peaks and low troughs of IVIG boluses given every 4-6 weeks.
JonJ said:


Like Uncle Bill, I usually see an improvement in my neuropathy shortly after an infusion. Therefore, I assumed that the IVIG from a particular infusion kicked in a few days after that infusion. However, that assumption appears to be incorrect, at least in my case. I got permission for an experiment when I was getting infusions every other week. I moved up a single infusion by one week, which would result in unusually high immunoglobulin levels in my blood. I expected to see some improvement from this experiment a few days after the infusion that I moved up by one week. I did see a big improvement, but it took more than three weeks for the improvement to appear. Apparently, it takes a while for the myelin to grow back. When I got an increase of about 4% in dosage (remaining on a two week schedule), I didn't see the improvement in my neuropathy for more than four weeks. I think that the improvement can be observed earlier if the increase in blood immunoglobulin is larger. I suspect that, if I missed an infusion, I would still see an improvement in my neuropathy a few days after the normal infusion date. I don't think it's at all surprising that it would take more than two infusions and a few days to see an improvement from IVIG.
Jon

4
I just sent an email message to the corresponding author containing the following language. I'm curious if he will respond.…

"I'm a member of an Internet support group called "Living with CIDP" and I've also been receiving IVIG infusions for nearly 16 years. This message is in response to your recently accepted article entitled "Optimizing IgG Therapy in Chronic Autoimmune Neuropathies: An Hypothesis Driven Approach."

Like many members of living with CIDP on maintenance dosing schedules, I often saw an improvement in my neuropathy shortly after an infusion. Therefore, I assumed that the IVIG from a particular infusion began a few days after that infusion. However, that assumption appears to be incorrect, at least in my case. I got permission for an experiment when I was getting infusions every other week. I moved up a single infusion by one week, which would result in unusually high immunoglobulin levels in my blood. I expected to see some improvement from this experiment a few days after the infusion that I moved up by one week. I did see a big improvement, but it took more than three weeks for the improvement to appear. I thought that this was because, it takes time for the myelin to grow back. When I got an increase of about 4% in dosage (remaining on a two week schedule), I didn't see the improvement in my neuropathy for more than four weeks. I think that the improvement can be observed earlier if the increase in blood immunoglobulin is larger. I suspected that, if I missed an infusion, I would still see an improvement in my neuropathy a few days after the normal infusion date.
Although I haven't read most of the references cited in your article, it's not clear to me that any of them were about the responses of CIDP patients whose maintenance dosages or scheduling of IVIG infusions were modified. It could be that the improvement seen shortly after an IVIG infusion results chiefly from prior infusions, rather than the latest one. Is there data which would confirm or rule out this possibility?"
5

FYI, I received a very nice response from the corresponding author, Dr. Mel Berger, who works for a pharmaceutical company that makes IVIG (Privigen) and other products. Unfortunately, his message contained a note apparently attached to all of his work-related messages… that the information is confidential and privileged and is for the use of the addressee only. As a result, I can't attach his message. He emphasized that there is no cookbook approach for treating CIDP and that the best approach needs to be determined for each patient. He hoped that my doctor and I could accomplish this. He didn't explicitly answer the question I posed at the end of my message, but he said that more dose/response data is sorely needed.