Things I learned
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November 10, 2008 at 6:53 pm
Here ar9e some things I learned.
EPO – Pleitropic cytokine name of the drug. Promotes growth for regeneration of nerves. The drug is approved for other uses, so it should be able to be passed for use sooner than other trial drugs. It currently is in the four legged furry friend phase. It has a 2 x rate of regrowth.Something about checking these titers to see if nerve repair or axon regeneration can happen. (Another quick slide, info may not be complete)
IgG anti GM1 & GD1A have a poor recovery rate
Anti G D1A & GT16 (axon regeneration)
FC Gamma Receptors Nerve Repairs Ganglioside antibody titers (I missed parts of the slide, best I could do.FCyRs (receptors) is a potential therapeutic strategy for promoting signals for nerve repair.
Interferon B1a (beta one A) used in MS and now in Cidp for very stubborn cases. Not to be taken lightly re side effects.
Duration of treatment – Average 40.5 months range 1 month – 20 years. Median 24 months.
Some docs were in favor of Rituxin, some not. All said it is imperative that docs do not discontinue treatment before 18 months.
Cell Cept was not well recieved. Some still did use it, others said it caused cns involvement.
Regarding CNS involvement, one doc said there is cns in cidp, another said no?
The studies for the use of steroids (I think, it was dexamethasone I believe that is a steroid) with ivig did not give significant proof with in scientific data paramaters that there was actually a benefit to use them. 44% and 52 % were the #’s hopefully someone else can add to this, the slides were fast.
Alemtuzab (ms drug) vs Interferon B1 both last resort as side effects are serious.
Did not speak highly of stem cell transplant or aumogulous (something like that) partial bone marrow transplant. They said very dangerous and could die as a result of procedure, not to mention the drugs taken for rejection. Also said cidp back with in 2 years.
Vaccines, check a post I responded to. In a nut shell, jury was still out some docs said yes some no. Some actually got them theirselves others no. It seems most agreed if you are a compromised individual it would be a good idea. (very old, immunosuppressants) I personally asked if those with ivig would be at greater risk getting them because it is live and could trigger immune system to start. Some said not big deal, I think Dr. Cornblath was the one that responded no live virus. I also aske d about the relavance of even getting a shot when ivig is being administered as the ninds reccommends that vaccines should only be give if off of ivig for 6 months. One doc did comment as I too think, if you are on ivig you probably won’t get sick at all any way. As has been the case pretty much with Kevin.
Dawn Kevies mom -
November 10, 2008 at 7:04 pm
Hi I am back, I was not sure if I had any room left and did not want to type for nothing so….
IVIG – Full life of IVIG was said to be 30 days at best, one doc privateley comented 21 days. that is troubling to me. The ninds site says 42 days and Baxter says 42 days. Perhaps they were speaking in general terms for the duration of most patients and not the actual drug itself ie, tylenol says it lasts 4-6 hours??
There was also mention of possibly removing CSF and cleansing that as a mode of treatment. not sure if they are doing it or thinking it. Can’t see Kevin doing that! Ouch.
I am sure others will be along w/ more info.
If anyone is interested, there was a really informative handout that they gave at the end of the question/answer that has maybe 30 abstracts of different studies, you could pm me your fax and I could send them to you.
I hope With Hope will be along to add, correct, my notes, I hope I did not make any major errors as they talk fast and the slides are difficult to digest ,translate and transcribe in a short period of time for a mom!!!!
Dawn Kevies mom -
November 10, 2008 at 7:11 pm
Hi Dawn, good job with the info. Question, the info you provided, is it just for CIPD? Thanks!
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November 10, 2008 at 7:19 pm
Actually,
Any info regarding the nerve repair or I should say regeneration was directed to gbs. I would assume (you know what they say about that word) if someone with cidp had axonal damage it would aply as well, I would think that a damaged nerve is a damaged nerve) But that is just the mom opinion. They did not mention anything new really for pain other than the regular stuff gbsers take. Since there is no progression in gbs, the other drugs would be for cidp.
Dawn -
November 10, 2008 at 7:21 pm
I keep thinking of things. This next one is for all of the pregnant moms out there.
Someone asked if they can get an epidural w/ gbs or cidp, they said yes. Interestingly, there were pregnant women there with cidp who said pregnancy put them into remission. They did add that they had a course of ivig immediateley after the birth.
DAwn -
November 10, 2008 at 7:52 pm
Hi family,
I’m very tired this evening but I wanted to see if I can add anything. I feel so disappointed that I don’t have any notes but there was no way I could write things down and my brain is in a fog right now so I don’t know how much I’ll remember. I do remember that Dr. P said when it comes to having vaccines you have to weigh the risk against the benefits. Two years ago all the Dr.’s on the panel of experts said have the flu shot, this year it’s a mixed decision. -
November 10, 2008 at 7:59 pm
Hey Guys! Dawn I checked my notes and the inconclusive study was on Methyltrexate (don’t know if I spelled that correctly) I guess they use it a lot in Rheumatoid arthritis and they wanted to see if it limited the IVIG needed but the study was inconclusive for a number of reasons.
Great to see you all, Liz glad you got home safely. Rest up, I’m sure you are tired.
Take care,
marjie
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November 10, 2008 at 8:09 pm
Vitamin B-6 is NOT good to overload on, 50 mcg is all (think that is the measure in units I think.
If I am getting annoying with posting what I remember randomly, let me know. It was a rough week emotionally I took 2 xanax last night and my memory is on delay today!!! Heck, I am on delay!!!
DAwn -
November 10, 2008 at 9:15 pm
[QUOTE=Dawn Kevies mom]IVIG – Full life of IVIG was said to be 30 days at best, one doc privateley comented 21 days. that is troubling to me. The ninds site says 42 days and Baxter says 42 days. Perhaps they were speaking in general terms for the duration of most patients and not the actual drug itself ie, tylenol says it lasts 4-6 hours??[/QUOTE]
Threads who is an immunologist clarified that for us on the “CIDP-Rituxan” thread earlier. The half-life of antibodies in reality is 5 to 10 times longer than text book value. Text book value for IgG – IVIG is more than 90% IgG – is 21 days. That means half-life for IVIG could be up to 105 to 210 days. Since this is not “[U]life[/U]” but “[U]half-life[/U]” this means that after 105 or 210 days [U]half [/U]of the IgG in IVIG is still there. IgG is the important component of IVIG,This could explain why my titers of antibodies are going down so slowly in spite of getting Rituxan treatment. (see graphs in “CIDP-Rituxan” thread)
BTW: If I remember the IVIG poduct description correctly, there also are antibody [U]fragments[/U] which most likely don’t last that long
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November 10, 2008 at 9:33 pm
Keep the posts coming Dawn! 🙂
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November 11, 2008 at 9:19 am
Dawn,
I take 100mg daily of B6 is that a safe dose?
Shirley -
November 11, 2008 at 9:51 am
Thanks for the information. I just wish that Carolyn and I could have been there, but…
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November 11, 2008 at 10:03 am
Hi Shirley,
We do not take supplements, so I have no experience with them. I just remember bringing up that vitamin in particular and the concearn they voiced on overdoing that one. One of the docs said a multivitamin intake would be enough for B6 and another doc added that green veggies and the multi would be enough. I do not even know what B6 is for, just remember their attention brought to it and I know fasmily members on the site do take alternative supplements so I wanted to pass the info along.
Dawn Kevies mom -
November 11, 2008 at 10:19 am
Shirley,
I looked it up on Mayo, I do not know how to do the conversion. The symposium used micrograms as the unit of measure, you and mayo used milligrams, so I do not know how to convert it. I also noticed that if you go to dosage on the Mayo page it give symptoms of what happens w/overdose. PArasthesis (spelling), something about neuropathy, other neurolog. issues, so I see why they mentioned it. We are carnavours in our house, and it says meat, milk, cheese, carrots, peas, etc. all contain B6. I imagine that is why the one doc said we probably get enough through consumption. Maybe Norb or Andrew can help you with the mathematical conversion. How I made it through calc and statistics in college is a mystery to me!!!!
Dawn Kevies mom -
November 11, 2008 at 10:56 am
mcg (microgram) = 1/1000 of a milligram or 1 mg (milligram) = 1000 mcg
The dosage recommended by Mayo is 100 mg which would be 100,000 mcg. Dawn, you wrote 50[U]mcg [/U]from the symposium. That must have been 50[U]mg[/U] and not [U]mcg[/U] to make any sense.
The multi vitamin I am taking has only 3mg but then like Dawn we should get enough in our food.
From Mayo website:
Vitamin B6 (pyridoxine) is required for the synthesis of the neurotransmitters serotonin and norepinephrine and for myelin formation.
Pyridoxine deficiency in adults principally affects the peripheral nerves, skin, mucous membranes.
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November 11, 2008 at 11:10 am
Thanks Norb, I knew you would help. I remember two docs on the panel discussing the units of measurement and there was confusion between them, micro/milli. But they did say 50, maybe they feel 50 with food would be enough. They seemed to stress multi vitamin dosing would be sufficient. I bet the 3 you take is what is in a vitamin. So, I guess you are dead on w/ your dose.!!! Have you found any info on the 18 month treatment suggestion for rituxin?
DAwn Kevies mom -
November 11, 2008 at 11:49 am
Norb, Dawn, Thank you for the info and conversion, it helps me. Think I will stop the B6 now, sure i am getting enough in my foods.
Shirley -
November 11, 2008 at 12:24 pm
Shirley, what I remember is that the doctor said that you could take up to 100 mg a day of B6 and that personally he recommended 50 mg a day with a good diet ((which would mean likely variety including vegetables and meat and not all junk food)). The problem discussed was that too much B6 can lead to peripheral neuropathy. Lots of people think that any unneeded B vitamins are just pee’d out and therefore safe, but he was saying that you have to be careful not to get too little and not to get too much B6. The superB vitamins have too much and could make neuropathy worse.
The other big thing that was discussed was not to get too much zinc (a medicine that is now used a lot with belief that it affects the chance of getting a cold or getting over a cold–as zinc lozenges). Too much zinc leads to too little copper which can cause neuropathy. This is a relatively recently recognized problem. He said it is not known how much zinc is safe and so he recommends that people not take any extra than what you get in a regular diet. You have to have some zinc for the body because it is required for some metabolic (enzymatic) processes. My daily vitamin (Flintstones!) says that the recommended daily value for B6 is 2 mg and for zinc is 15 mg.
WithHope -
November 11, 2008 at 12:42 pm
Thanks With Hope!
Dawn -
November 11, 2008 at 1:06 pm
Dawn,
no, I do not have any info on the recommended 18 months for Rituxan treatment. Here is what I do know:The protocol for Non-Hodgkins lymphoma is 4 weekly treatments every six months over two years. Each treatment consists of 375mg per square meter of body surface. This is the protocol I am on except we increased the number of treatments to 8 weeks for the third round. As far as my oncologist is concerned any improvement of my neuropathy would be secondary. Since Rituxan is not approved for CIDP there probably is no official protocol.
Dr. Renaud in Switzerland published a study which included patients like me with anti-MAG IgM neuropathy. Some patients improved after one year of Rituxan and continued to improve the second year after a higher dose. Some of the patients showed improvements only after the second year. Here is the abstract:
[QUOTE][B]High-dose rituximab and anti-MAG–associated polyneuropathy[/B]
Abstract—Rituximab has been administered successfully in patients with polyneuropathy associated with antibodies to myelin-associated glycoprotein (anti-MAG). The authors present a follow-up study with high-dose rituximab.
Increase of rituximab from 375 mg/m2 to a dose of 750 mg/m2 was well tolerated and led to clinical improvement in four of eight patients, along with improvement of nerve conduction velocities and a reduction of anti-MAG antibody titers.
NEUROLOGY 2006;66:742–744[/QUOTE] -
November 11, 2008 at 1:11 pm
WithHope,
That helps me decide, I am going for the 50mg
and get the rest of B6 from foods.
All of this is confusing, good to have all of you knowledgeable
people here to help.
Thank you
Shirley -
November 11, 2008 at 2:04 pm
Dawn, actually according to the protocol I am on I am getting my fourth and last set Of Rituxan treatments after 18 month – in April.
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November 11, 2008 at 2:12 pm
Well then Norb, since it seems based on yours and Andrew’s correspondance that things have not gotton worse, maybe April will be positive. Five months to go and I will be praying for you. Hey we have not seen those mouse ears lateley!! Where ever did that picture go. BTW, what was the outcome with the Honda problem?
Dawn Kevies mom -
November 11, 2008 at 4:23 pm
[QUOTE=Dawn Kevies mom]Well then Norb, since it seems based on yours and Andrew’s correspondance that things have not gotton worse, maybe April will be positive. Five months to go and I will be praying for you. Hey we have not seen those mouse ears lateley!! Where ever did that picture go. BTW, what was the outcome with the Honda problem?
Dawn Kevies mom[/QUOTE]
They keep growing back every time [IMG]http://www.ourbluemarble.us/forum/lol.gif[/IMG]
[IMG]http://www.ourbluemarble.us/forum/ears.jpg[/IMG]We are still working on the Honda issue to get a reimbursement for the handicap mods. We contacted a consumer advocacy group. The Honda dealer in MI just called and told us they are going to send a letter certifying that we bought it from them and not Freedom Motors.
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November 11, 2008 at 5:32 pm
Oh dear Norb! I saw your ears and started laughing in tears! You made my day! Something I can add about the B Vitamins. B-12 also helps the nerves and you can take all you want of that and it won’t cause any nervous system problems but that B-6 can if too much get’s in your system. Vitamin D is also another Vitamin that really helps too! Taking a One a Day Multi Vitamin is something I started taking after my surgery and it has helped me feel better! Dawn! Good information and I am grateful that many of you are sharing to those that were not able to attend. Means alot to me! Thanks for sharing!
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November 28, 2008 at 9:26 am
i would be very interested in the handouts to which you referred. i do not, however, have a fax machine handy. is there a way to scan and email them? if its a lot and way to much work, don’t bother– i know you have your hands full.
also, can you tell me more about those who took cytoxan but whose symptoms returned in 2 years… can you say more about that?
thank you for your time,
alice
[email]ad0237@yahoo.com[/email] -
November 28, 2008 at 5:23 pm
[QUOTE=alice]i would be very interested in the handouts to which you referred. i do not, however, have a fax machine handy. is there a way to scan and email them? if its a lot and way to much work, don’t bother– i know you have your hands full.
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Alice, I have most of it scanned, 31 pages of abstracts. I’d be happy to email them but I don’t know what restrictions there are on Yahoo. Even after reducing resolution and compressing each one is around 200k.
Let me know. -
November 28, 2008 at 5:33 pm
See Norb, it was alot to scan!!! Not to mention I never would have figured out how to send it here! So, now that I sent you the papers AND you are so smart with the computer unlike myself, you can be the official sender outer to others!!!!
Dawn Kevies mom -
November 28, 2008 at 6:05 pm
Carol said to me: “this is good exercise for you. You need it.” “Thanks, Carol!” The scanner sits on a shelf above the computer and I had to get up from the wheelchair 31 times to put in another page.:eek:
Anyone who wants them, please, send me email or PM.
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