- This topic has 7 replies, 4 voices, and was last updated 14 years, 11 months ago by Anonymous.
May 24, 2006 at 11:42 am #2801AnonymousInactive
When I received my first course of IVIG end of last year my neurologist told me that we really don’t understand how IVIG works. I wasn’t very happy about the answer especially since it did not do much to improve my condition. Later I learned that in many cases of CIDP it is not effective. Moreover, it is not considered useful for my variant, antiMAG IgM, also called PDN (Paraprotaenemic Demyelinating Neuropathy). In spite of all this, after a failed attempt with Prednisone, Dr. Quan put me back on IVIG last week.
What is odd this time, I am having flu-like symptoms for the fifth day in a row, now finally getting better. No change in my CIDP symptoms. I am wondering if it is my immune system reacting to the foreign antibodies or the foreign antibodies attacking my immune cells.:confused:
Did anybody get any real explanation from their neuro how IVIG really works?
May 24, 2006 at 2:02 pm #11554AnonymousInactive
No doubt Kens will be able to give you definitive info on PDN–he’s the UK resident expert (and knows more about it than most doctors).
Re IVIg and flu symptoms, have you tried premedicating with an allergy med like Benadryl? Without it, I not only feel like I’ve got the flu, I break out in a rash. Of course, that doesn’t help much after the fact.
IVIg is thought to override our immune systems (as opposed to corticosteriods such as prednisilone and cancer drugs which suppress the immune system), and thus bring the immune system into control, allowing the myelin and axons to regenerate.
Best wishes in the battle.
May 24, 2006 at 2:57 pm #11559AnonymousInactive
Hi Deb, every day before the nurse stated the IVIG, she gave me two Tylenol and one Benedryl. Last time the symptoms only lasted a day. I don’t know why it is different this time.
Yes, I corresponded with Ken several times aleady and read his excellent website more than once.
[b][I]IVIg is thought to override our immune systems (as opposed to corticosteriods such as prednisilone and cancer drugs which suppress the immune system[/b][/I]
My question is how does it do it? Our immune system mistakenly produces antibodies against myelin (in my case myelin associated protein) and continues to do so as long as there is myelin. Do the donor andibodies eliminate our own “bad” antibodies?
May 24, 2006 at 4:02 pm #11564AnonymousInactive
I have something I got from Threads on the old forum (e-mail), that might be of interest to you. I’ll try to paste it here. She refers to a post explaining something to you, and if you go to the main forum, you’ll find an explanation of how to retrieve posts from the old forum.
When I read the literature, it underlines the problem “One of the reasons for uncertainties is the lack of clear understanding of pathomechanisms of disease progression as well as of understanding of the mechanisms of how IVIG suppress hypersensitivity reactions of the immune system.”
There are several mechanisms by which IVIG is believed to work. One I discussed with Norbert, which is the downregulation of Fc receptors. Other aspects include possible neutralization of factors that increase inflammation, block of differentiation of some innate immune cells, and neutralization of complement (a set of proteins that work with antibodies to kill cells).
In addition to the variable mechanisms, it is also well known that the immunoglobulin can be variable from batch to batch, and it has been documented that European formulations differ from North American (although I don’t know why).
I reviewed the literature, and while IVIG is nowhere near as effective for PDN as it is for CIDP, there are reports of patients getting some benefit, usually short term. For example, I found this abstract:
A randomised controlled trial of intravenous immunoglobulin in IgM paraprotein associated demyelinating neuropathy. This multicentre randomised double blind crossover trial tested the short term efficacy of intravenous immunoglobulin (IVIg) 2.0 g/kg given over 24 or 48 hours in patients with paraproteinaemic demyelinating neuropathy (PDN). Twenty-two patients were randomised and completed the trial. After 2 weeks, the overall disability grade decreased during both IVIg treatment and placebo but neither change was significant nor was the mean difference between the treatment effects. After 4 weeks the overall disability decreased by a mean of 0.55 [0.67] grades during the IVIg period (p = 0.001) while it was substantially unmodified during the placebo period. The mean difference between the treatment effects was significant (p = 0.05). Overall during the IVIg period 10 patients improved and 11 were stable and one got worse. During the placebo period 4 patients improved, 4 deteriorated and 14 were stable. Many secondary outcome measures, including Rankin scale, time to walk 10 metres, grip strength, sensory symptoms score were significantly better during IVIg treatment. Two serious adverse events occurred during the trial, both during placebo treatment. In conclusion the trial showed some short-term benefit of IVIg in about half of the patients confirming previous observation.
Good luck – and have a look at my “Daily Delight” entry at the UK forum.
All the best from
May 25, 2006 at 10:51 am #11624AnonymousInactive
Thanks, Allaug, for posting Threads explanation. To be honest, I totally forgot that she explained one aspect of the mechanism to me before. Must be getting old or having a “senior moment”. Hope I can find it again.
BTW, an excellent book on the immune system is “Life, Death and the Immune System”, a Scientific American special issue. It was required reading for the immunology course I audited at St. Olaf College (little did I know then). It is pretty detailed but not too heavy reading if you have more than just a general interest in the subject. It has lots of good illustrations including one that explains mimicking in auto-immune diseases. It is a few years old but still appropriate today IMO. It is out of print but available through Amazon.com for less tha $5 (this is not a commercial 😀 )
You can see the book in the attachment “Sydney explains the immune system to me”. My granddaughter was absolutely fascinated by all the pictures yesterday. Couldn’t get her away from it. 🙂
May 25, 2006 at 3:53 pm #11640AnonymousInactive
Allaug, I couldn’t find Threads answer neither using Google nor in my documents. I remember it was about the Fc region at the bottom of antibodies. When activated it attaches to a receptor on immune cells.
Did you save it by any chance?
May 25, 2006 at 5:32 pm #11655AnonymousInactive
No,sorry, I was too self occupied at the time!
May 29, 2006 at 3:28 pm #11957AnonymousInactive
my premeds for IVIG are 40mg solu-medrol AND 50mg benadryl IV.
rate of infusion is usually associated with bad side effects. after the first infusion they determine how sensitive your are to IVIG and seem to want to ramp up the infusion rate. personally, i never go above 160ml/hr. anything faster than that and i pay dearly with headache and other flu like symptoms.
another thing that works for me is to make sure i am well hydrated before, during, and after infusion. if i forget to get enough water in me, i find one or two 20oz gatorade bottles do the trick.
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