[FONT=”Microsoft Sans Serif”]oh your welcome norb, there is another facebook one for the UK, perhaps that would also be interesting to peruse: [url]http://www.facebook.com/group.php?gid=7829609636[/url]
and then there is facebook international:) [url]http://www.facebook.com/group.php?gid=61063777346[/url]
but my fav is the 1st one.
hope your well norb, it’s been a while.
NORB!!! Shame shame! Shame on you for abandoning your pets! Now now! You know you could get arrested and fined for animal creulty! 😀 😀 😀 Gosh Norb! You tossed Linda H Stormy and all that you named us by out in hot yard for no telling what will get them! LOL!
Well I know the worm you name Linda H will surive! LOL! Storny? You think we can make it out on the streets? I hope where you tossed us was in a good neighborhood with not too many kids around!
You know how kids can be? They can walk by a worm on the street and squish with their sneakers causing the worm to explode! But then again I hope their are no science teachers around either where she collects the worms and makes the students disect them with a sharp knife!
And I sure hope I don’t become someone’s fishing bait! LOL! Hugs
Oh dear Norb! ROFL! You got me laughing so hard I almost wet my jammies! LOL! Too funny! You certainly make this site alot of fun to come too! HeHeHe! Thanks for making my day! Can’t wait to see Smiley and Cheryl and the rest come in here! LOL! Well at least I can go to bed smiling tonight! I can’t stop laughing! I’m about to fall out of the chair! Norb! Your fantastic! LOL! Only you would have thought of this! Thanks for making my day! Hugs!:D 😀 😀
That makes a lot of sense, Norb.
One thing that is probably very basic but for which I have seen different descriptions is the cloning activity. By “cloning”, do we mean that the plasma cell is cloned so that there become many identical copies of the same plasma cell making the antibody? Or do we mean that one plasma cell “clones” the antibody…making many identical copies of the same antibody. I’ve seen it described both ways and I wonder which way is correct.
Like you, I also noted Thread’s mention of downregulation as opposed to elimination, backed by the incidence of small populations of plasma cells with CD20 markers in normal plasma donations. That lends hope of course to the idea of Rituxan continuing to target anti-MAG producing plasma cells.
I had my appointment today with the neurologist and she agreed to request our Ontario medical system to approve testing of a blood sample for anti-MAG. My levels on the first sample 12 months ago came back as [B]52,000 [/B]compared with a normal titer of [B]under 1500[/B]. In your chart you mention your highest level of 19.6 and an average of 15.5. Are your figures x 1/1000? In other words, on your chart, would mine show as 52.0? If so, ouch.
On a positive note, there was an improvement in my reflexes, both knees and ankles. However, very little change in nerve conduction (EMG) since April. Still, I am convinced that the Rituxan has had a positive effect.
The plan now is to wait 6 months without more Rituxan treatments to see if the improvement continues albeit with a time lag and in order to lessen the possibility of side effects. These I understand to be hypogammaglobulinemia and/or Progressive multifocal leukoencephalopathy (PML). The former is relatively easy to handle but the latter can apparently be quite debilitating and fatal.
I have always wondered until now whether there is a cure for IgM MGUS or does it somehow go into a remission. My understanding now is that it is chronic with no cure, but the clinical symptoms of neuropathy can be improved by the Rituxan treatment. However, and I saw this in literature, after stopping Rituxan completely, the anti-MAG levels will gradually return to their old levels. I am therefore now at the point of realizing that this will be a balance for the rest of my life between prescribing the right amount of Rituxan to allow a certain quality of life, maybe not 100% of what it was two years ago but still OK, and overprescribing the Rituxan to the point where the likelihood of side effects becomes dangerously high. (Am I panicking on the side effect issue? Who knows!!).
There was both good news and bad news today…but at least a few more pieces of the puzzle have fallen into place.
Regarding the charts of Rituxan levels, I felt all along that those were open to debate. My guess is that the shape of the curves is more or less correct, but the time line axis is questionable.
[QUOTE=norb]…you might be interested in this illustration of the use of flow cytometry in immunology…[/QUOTE]
I’ve gone down to the basement to check what equipment I have under the workbench, but sadly am missing some parts to assemble a flow cytometer.
On another note, I plotted your Anti-MAG results into the chart of anti-MAG levels in Susan Renaud’s paper. Your levels (excluding the faulty reading of 19.66 in June) as a percent of baseline over a 12 month period are relatively flat compared with results in her study. I found that surprising. Could it be that the anti-MAG is being produced 15% by B cells (now eliminated) and 85%by plasma cells without the CD20 antigen? In that case, would plasmapheresis at the same time as the Rituxan treatments hold some possibility as a cure? Assuming one treatment every week, you could get an anti-MAG measurement after a few weeks to determine whether the anti-MAG titers are showing any significant drop from the October measurement of 12.94. it’s just a thought and certainly not a medical recommendation because I really don’t know a lot about plasmapheresis.
Norb! You are right about the science part! So close but just not there yet! One missing piece of the puzzle and hopefully we will all see a cure. I am hoping to see one day a medication that will rebuild the nerves faster. Repairs the nerves faster than they can get damaged. But I am in lala land on that one right now! LOL!
I am seeing alot of progress being made though! They just recently did an arm transplant on a man that had no arms and had not had them for a long time. Now this man has arms. They have learned how to repairs nerves in that field. The woman that got the face transplant! Stem cell research!
The one thing the US has messed up on is the Stem Cell research.
While other countries are doing more than we are but yet we have some of the best doctors in the World we are lagging behind on Stem Cells which could be saving millions of lives! But moral laws are stopping alot of that from happening. I don’t believe in killing babies. But we have all these women having abortions and there are stems cells there that could save many lives.
I have a cousin with Amyloidosis and has had it for years. He has seen so many clinical trials and still sick. He’s a fighter though! This past year though has not been too good for him. The last time I saw him, I could see the disease has finally taken over.
You must be very proud of your daughter. Alot of hard work to become a doctor. Of course she’s a good doctor! You taught her well!;) Takes a good parent and good teaching. Hugs
Hey Norb! You lived in PA too! Where bouts? I lived in between Boothyn and Aston, PA and Philadelphia region for almost 16 years. Back in the early 80’s. I loved it up there. The Brandywine Area. I’m going to have to pull out my recent photo’s and post them. Very beautiful place.
Me and my husband went out to dinner on an anniversary one time several years back. We went to Penn’s Landing. It was a ship restaurant called the Moshaloo! Very romantic dinner and very high in price but fun going too!
While sitting there I was looking at a guy sitting at a table close by and it was Rob Lowe! Ohh my gosh! I saw Rob Lowe. I always thought he was nice looking and admired his movies.
Don’t get me wrong but I do love my husband dearly. But my mouth dropped and I could not help but stare! LOL! On my wedding anniversary! I really felt bad but it was the first time I had ever seen a movie star in person. Then later on as years passed I saw others up there too. Saw Bruce Willis also. He looks better in the movies! LOL!
I have been to concerts in my younger days but they are Rock stars. Seeing a movie star was exciting. Never seen Brad Pitt! Drats! Hugs
Norb, I know it is scarey to think about the possibility of PML, but it is very, very rare. When we talk about all the side effects of chemotherapy and rituxan with the families of children with cancer, it is tough, but often it helps just a little to know that you are fighting as best your team of advocates can what you DO have and so that is really a lot more important than a very small possibility of what you might possibly get or have happen. Do you see what I am saying? WithHope
Right now I am on Cozaar, which is in the same class as Micardis. I have been taking it for eight years and recently it just isn’t controlling my blood pressure as well. Thanks for the info.
I had GBS many years ago but have a friend with CIDP. She is in her 70s and goes to John Hopkins for treatment. It took her several years to be diagnosed also. Like my friend, you seem like a person who has a positive attitude. I hope you are doing well.
Take Care, Susanne
after a number of rounds of rituxan, theoretically i thought there are no circulating Bcells (according to the literature) and the half life of the anti-body is short
so why the presence of anti mag in fact not a big change??
i theorized with the doc that
1) reclusive Bcells (non serum)
2) rituxan in fact doesn’t get all the Bcells
3) Bcells that are producing antibody are in fact unrecognizable to rituxan (in some)
you gave me a good idea that it maybe a very small number of b cells producing anti-mag I did see a reference some where that individual cells are able to produce large quantities. given a probabilistic model of elimination even a few of these might be left.
another study indicated that even after marrow transplants with corresponding wipe out of the immune system that there is some mechanism of memory that recalls the auto immune issue. to me this suggests another synergistic mechanism.
Dr. Latov indicated to keep at it every six months as “needed”. i wonder about the log term implications??
I am pouring through the literature on cytokines red pepper and turmeric, hoping to eat my way out of this
I was at King Mongkut University doing a class on LED design I hope to get up to Chiang Mai next trip out. Bangkok was a little intense.
I am so sorry to hear about Norb. He is such a kind and knowledgeable man that has helped me with my questions several times. I will keep you both in my prayers. Dawn, Kevie’s mom
I have a split personality. ha.. I came to this forum a few years back. It depressed me at the time. When I stumbled across it the other day, I registered and it said I was already registered. Doh ! I been getting weak for a few dayz and I guess I was looking for some support. This was my first thread I think. I looked around at these gray walls in the tavern and such, and I decided while I have the time, I would paint them some 60’s colors, tell a few jokes, and see how many friends/enimies I could make while I’m waiting/gettin my ivig the next few dayz.
so, wat up with u dog?
*does the secret sign*
Norb, Lee, ole buddys you won’t believe this. I put this song I wrote on the net. Now Women coming outta the woods. They know war I live, my real name, its crazy.
They young and purdy too. Soon as they boyfriends/ husbands go to sleep/go out, etc. They start stalking me.
I may need to hire u guys fer a body guard for its over.
I gotta watch what i put in the garbage now. They may be out there now, diggin for a snot rag for all I know. I’ll have to leave the porch light on like the rest of the neighborhood. I just can’t afford to right now, im still looking for a record deal.. Keep this to yourself. I’m working on a new song now. its called *whispers*
It’s hard gettin over u, while ur under him.
I gotta go pee, order nother round.