IVIG and progression of GBS

    • Anonymous
      September 29, 2007 at 7:28 pm

      Yesterday I learned something that I have been wrong about for a very long time 馃槷 馃槷 , and that is ……….

      IVIG does [B]NOT[/B] stop the [B]progression[/B] of GBS once it has been given, it helps in making the recovery period (recovery curve) quicker or come sooner. So in fact GBS can continue to progress, but if IVIg is effective, once the bottom of the curve has been reached, the start of the recovery should be quicker.

      I always knew that IVIg, if successful, helped in the recovery of the patient, however, I always thought that the IVIg was given to try and stop the attack, which I always understood meant that the progression would stop.

      Dr. Cornblath explained it to me like this ……. If you have a graph, with a U …… If IVIG is given (for instance) 3/4 of the way down the first line of the U, if effective, the GBS can continue naturally down to where it is at its worst, and then the upward path should start sooner than if IVIg was not given. The U curve will be closer/sharper (sort of getting closer towards a V).

    • Anonymous
      September 29, 2007 at 9:43 pm

      different way? In that……
      IVIG: is considered an ‘immuno-modulator’ that may or not, over-ride the immune ‘cascade’ that occurs in any person’s systems. That means essentially that: It either OVER-rides what is going on in the immune system vis-a-vis the meyelin and other nerve cell destructions OR in large doses, re-programs [optimistic in my view] existing malfunctions in the immune system. I have seen no evidence that IVIG ‘totally or even actually over-rides’ immune-malfunctions..

      CURVES aside, plasmapheresis is probably the most acceptable and available way to ‘eliminate’ massive immune globulins in any persons’ systems…but, compared to IVIG it’s a far more invasive, thus one prone to extra infections, process. Honestly, I would LOVE to see some ‘curves’ giving the pros and cons vis a vis IVIG. I gathered going into the IVIG process that it’s a 50-50 success/fail rate..depending on who is doing the documenting…I feel that the DOCUMENTATION aspects regarding the success or failure of infusions is due to a lack of interest for getting ON LABEL approval by manufacturers…I really do NOT know why the mfrs do not pursue ON label approvals for CIDP? My perception is laziness…Unless you are on Medicare.. I am not yet, but will be in enuf years to make advocacy matter.

      As for STOPPING progression, IF your immune system is going bonkers, well, It’s gonna take a lot of ‘modulations’ to keep it from keeping on going on. In my case, It is just that – SLOWING down the numbness crawl up and thru my body to that equalling a mere micro-march. IN all honesty, micro-marches have to be far better than other prognoses’s I’ve had that indicate that I SHOULD BE IN A WHEELCHAIR now…I have not accepted that, and I’ve a library of documentation to bolster my own philosophies..

      As for reaching a bottom of any CURVE…what are the parameters and/or Standards of definition of such CURVES????? I would really like to know IF I have ‘bottomed’ out and am on the re-bound? That kind of ‘carrot’ would be a plus in my book! Sorry, but…WHAT ARE THE CRITERIA???

      I do not mean to be either controversial nor adversarial here…but, did Dr Cornblath explain the distinctions between GBS and the chronic versions? There are over 20-30 variants of CIDP these days and new onew are added daily [so it seems] that take the CIDP definition miles further than a GBS basic definition. Actually according to the University of St.Louis [wstul] web sites the CIDP category has more than doubled in the two plus years I’ve become web-conversant. Definitions are becoming more mushy and variants are appearing to be in ‘the mix’…

      This all is scary in that, diagnosis becomes harder…and treatments/therapies even more hard to get…

      I don’t know about you, but getting the ‘diagnosis’ I have, was hard enuf…I sure would hate to have to jump thru more HOOPS???

      Well, we can discuss, argue or ignore…I’d rather discuss?

    • Anonymous
      September 29, 2007 at 10:38 pm

      What can I say …………… Honestly I dont know because I knew that I would get a response like this.

      I met Dr. Cornblath at a Medical GBS Conference yesterday and didnt discuss CIDP as the conference was for the treatment of GBS only. The treatment for CIDP is different obviously because it is chronic and because sterroids can be included and is effective in many cases, so I couldnt talk as to what exactly the benefit is or how or why IVIG is or is not beneficial in the same way as it is in GBS.

      I happened to pluck up the courage to ask a question (probably was the only ‘non-medical’ professional at the conference) regarding IVIG, I also said that I was led to believe that IVIG, if successful, stopped the continued attack or progression of GBS when administered. He explained what it did in the same way as I explained in my first post.

      Dr. Cornblath is a leading expert in GBS /CIDP and other Neurological conditions, is on the GBS/CIDP Foundations Medical Advisory board and is The Vice Chair of the Organizing Committee of the [FONT=Verdana]The International Inflammatory Neuropathy Consortium. [/FONT]

      [FONT=Verdana][CENTER][CENTER][B][FONT=Times New Roman][SIZE=3]151st ENMC International Workshop Lay Report[/SIZE][/FONT][/B][/CENTER]

      [CENTER][B][FONT=Times New Roman][SIZE=3]Hoofddorp The Netherlands[/SIZE][/FONT][/B]
      [B][FONT=Times New Roman][SIZE=3]13 – 15 April 2007 [/SIZE][/FONT][/B][/CENTER]

      [CENTER][B][FONT=Times New Roman][SIZE=3]Inflammatory Neuropathy Consortium[/SIZE][/FONT][/B][/CENTER]

      [/CENTER]

      [B][FONT=Times New Roman][SIZE=3]Introduction[/SIZE][/FONT][/B]
      [FONT=Times New Roman][SIZE=3]Neurologists, other experts and patient representatives from Europe and the USA met under the auspices of this ENMC workshop to consider the management of inflammatory neuropathy.Existing treatments for Guillain-Barr茅 syndrome (GBS), chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and related disorders leave unacceptable numbers of patients with persistent severe disability. Despite the evident need for better treatments, no trials are in progress for GBS and few for CIDP and related disorders. This workshop has launched an international consortium to discover new treatments for these conditions. Participants reviewed the evidence from Cochrane systematic reviews, randomised trials and observational studies for treating GBS, CIDP, multifocal motor neuropathy (MMN) and paraprotein associated demyelinating neuropathy (PDN). They then debated ways of making advances and reached the following conclusions. [/SIZE][/FONT]

      [B][FONT=Times New Roman][SIZE=3]Conclusions[/SIZE][/FONT][/B]
      [FONT=Symbol][SIZE=3]路[/SIZE] [/FONT][FONT=Times New Roman][SIZE=3]There is a need for better education of health care professionals to enable the earlier diagnosis of these potentially treatable diseases[/SIZE][/FONT]
      [FONT=Symbol][SIZE=3]路[/SIZE] [/FONT][FONT=Times New Roman][SIZE=3]There is a need for more research into the pathogenesis of inflammatory neuropathy[/SIZE][/FONT]
      [FONT=Symbol][SIZE=3]路[/SIZE] [/FONT][FONT=Times New Roman][SIZE=3]There is a need for more evidence in children[/SIZE][/FONT]
      [FONT=Symbol][B][SIZE=3]路[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]In GBS there is a need for trials of[/SIZE][/FONT][/B]
      [FONT=Courier New][B][SIZE=3]o[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]Intravenous immunoglobulin (IVIg) in mild GBS and the related disorder Fisher syndrome[/SIZE][/FONT][/B]
      [FONT=Courier New][B][SIZE=3]o[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]Plasma exchange versus IVIg in axonal forms [/SIZE][/FONT][/B]
      [FONT=Courier New][B][SIZE=3]o[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]complement inhibitors in acute severe GBS[/SIZE][/FONT][/B]
      [FONT=Courier New][B][SIZE=3]o[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]a second course of IVIg in patients who are still bed bound 2 weeks after the first course[/SIZE][/FONT][/B]
      [FONT=Courier New][B][SIZE=3]o[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]sodium channel blockers[/SIZE][/FONT][/B]
      [FONT=Symbol][B][SIZE=3]路[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]In CIDP there is a need for trials of high doses of methotrexate or else of rituximab additional to existing treatments depending on the result of the trial of methotrexate which will conclude in February 2008. [/SIZE][/FONT][/B]
      [FONT=Symbol][B][SIZE=3]路[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]In MMN there is a need for trials of methotrexate additional to existing treatments. [/SIZE][/FONT][/B]
      [FONT=Symbol][B][SIZE=3]路[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]In PDN the choice of trials depends on the outcome of the ongoing French-Swiss trial of rituximab with an intended 60 participants. However there would be likely to be a need for trials of higher dose or more frequent rituximab. Chlorambucil was also considered worth trying.[/SIZE][/FONT][/B]
      [FONT=Symbol][B][SIZE=3]路[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]For all these diseases, there is a need for improved outcome measures and the Consortium should support the PERINOMS study designed by the Rotterdam-Maastricht group.[/SIZE][/FONT][/B]
      [FONT=Symbol][B][SIZE=3]路[/SIZE] [/B][/FONT][B][FONT=Times New Roman][SIZE=3]Treatments for symptoms of particular concern to patients, particularly fatigue and pain, should also be tested. A trial of exercise for residual symptoms after GBS and in CIDP should be further considered.[/SIZE][/FONT][/B]
      [FONT=Symbol][SIZE=3]路[/SIZE] [/FONT][FONT=Times New Roman][SIZE=3]For all these rare disorders there is a need to implement statistical trial methods for identifying candidate treatments more efficiently[/SIZE][/FONT]

      [FONT=Times New Roman][SIZE=3]==============================================[/SIZE][/FONT]

      [FONT=Verdana]This man knows what he is talking about, [FONT=Verdana]HE DID NOT SAY that he knows everything about GBS, [/FONT]even he says there are varients out there that we have no idea about, and that havent been named yet. [/FONT]

      [FONT=Verdana]I’m affraid that I do believe and trust what he says, until such time he says something different.[/FONT]

      [B][U]## ADDED LATER :[/U][/B]

      I posted my first post to [B]correct the mistake I had made in the past[/B], I have always been told, and have always thought that IVIg stops the progression of GBS.

      [/FONT]

    • Anonymous
      September 30, 2007 at 1:51 am

      Ali & Homeagain

      I knew that IVIG didn’t prevent the progression of CIDP, but in my case, I did
      get results from 5 bags at 50grams in the hospital, when I couldn’t even move
      to get up. It did take a week, at that point to feel the difference.

      Remember the last GBS newsletter that explained about Fas and that in GBS
      patients, it reacted quicker to shut down progression, and it didn’t do that in
      CIDP patients – that is why we keep having relapses? It seems that is why
      a paralyzed GBS patient can rebound back to normal or almost normal, than
      CIDP patients can even hope for. That is what the researchers are looking
      into now…hopefully before the end of time…my time…lol.

      I chose not to have PP as well, too invasive, too scary, and too expensive in
      cost and time. I prefer the IVIG…I’d rather control it, than go through
      dialysis. Until they find a cure for CIDP, I guess we are stuck with it.

      Miami Girl

    • Anonymous
      September 30, 2007 at 2:15 am

      Thanks Ali

      Inspite of the above clarifications given by the Docs, my own experience says 鈥渢hat IVIG stops the progression of deterioration by GBS and physio therapy helpes to recover almost by 95%鈥. I now know two/three patients of GBS [who happen to be my colleagues], IVIG stopped the progression and recovered like me.

      It鈥檚 a belief all over the world that once originality is gone, there is no possibility of recovery as like original and our body is not exception to it. Moreover, the side effects or damages already done fetches the conditions like early tiredness, fatigue or so. That is what most of the GBS patients have.

    • Anonymous
      September 30, 2007 at 8:37 am

      Yes MG, I remember the article, and unfortunately I knew that IVIg didnt stop progression in CIDP 馃槷 , mores the pity though.

      With regards to the progrression of GBS after IVIG, I think many of us were under the wrong impression that if it continued to progress a few days or a week after the infusion of IVIg, then the IVIg was unsuccessful – which is not necessarily true.

      Sandeep, Yes it is extremely important to have physical therapy to help reach wathever your new ‘full’ potential is. It was mentioned that most GBS’ers never really get back to what they were before GBS:o .

    • Anonymous
      September 30, 2007 at 11:21 am

      Thank You Ali, for having the nerve to ask your question!:) And for sharing your new found knowledge with us. I really appreciate All that You do to help us!!!:)

    • Anonymous
      September 30, 2007 at 2:10 pm

      Ali, the explanation you just gave that you learned at the conference definitely makes sense for my own experience. After beginning the IVIg treatment, I continued to get worse for another three days, and it wasn’t until my fourth day of IVIg treatment that I hit my nadir (the bottom of the U), and started getting better again. I have no doubt that without the IVIg, it would have taken longer for me to reach the nadir and start improving again, and subsequently a lot more damage would have occurred. It also makes sense in that plenty of people recover from GSB without IVIg, but often sustain worse damage and have longer recovery times. This, of course, is not counting all the other treatments that works very well too (PP, steroids, etc.).

      Here’s another interesting little tidbit about IVIg that I just learned from my immunology lecture. When antibodies bind to our myelin, they form immune complexes that allow attacking cells of the immune system to target the myelin through special receptors. The large infusion of pooled human gammaglobulin that you get from IVIg causes a preferential activation of a special inhibitory receptor called FcgRIIB that is found on leukocytes (the attacking cells of the immune system). With this receptor preferentially activated, there is less activation of the attacking leukocytes. This means that there will be less tissue damage (i.e. the myelin will be less exposed to inflammatory chemicals and other types of damage usually inflicted by these immune cells). A different receptor, called FcgRIII, is the counterpart to the FcgRIIB receptor – when activated, MORE damage occurs. So you can see why a preferential switch to the inhibitory FcgRIIB receptor (as opposed to FcgRIII) is a good thing for GSB. They say some people with certain autoimmune diseases either have preferential activation of RIII, or else a complete lack of RIIB.

      Sorry if that was a little heavy on the immunology lingo – really interesting stuff, and really helpful to understand why IVIg can work so well for some people (as it did for me).

    • Anonymous
      September 30, 2007 at 5:03 pm

      Dear Cheryl,

      Thank you so much for the kind words, I think I really needed that!

    • Anonymous
      September 30, 2007 at 5:12 pm

      Katie,

      Oh my goodness yes!, my head is so full of the immunology lingo :p by the end of the day I didnt think I could even face driving home in rush hour traffic 馃槷 .

    • Anonymous
      September 30, 2007 at 6:49 pm

      [quote=keitaikatie]IVIg causes a preferential activation of a special inhibitory receptor ….. With this receptor preferentially activated, there is [I][U]less activation[/U][/I] of the attacking leukocytes. This means that there will be [B]less tissue damage [/B]….[/quote]

      I might be reading this wrong, but what you said seems to confirm that [B]IVIG does STOP[/B] the ongoing progression/damage of GBS by making sure the activation of attacking leukocytes is limited. Did I interpret that correctly? Or no?

      :confused:

    • Anonymous
      September 30, 2007 at 7:54 pm

      [QUOTE=OneBirdie]I might be reading this wrong, but what you said seems to confirm that [B]IVIG does STOP[/B] the ongoing progression/damage of GBS by making sure the activation of attacking leukocytes is limited. Did I interpret that correctly? Or no?

      :confused:[/QUOTE]

      I’m no expert, and I there is a LOT they don’t understand about this yet, but I think the issue is that the IVIg will help minimize the damage that the out-of-control immune system is causing. It won’t, however, stop whatever it is that is making this happen in the first place (for instance, it’s not stopping the cells that are making the antibody that is targeting the myelin in the first place, as far as I know). It will help to cut down big time on the damage that this process is causing, but won’t stop the source of the problem. Does that make sense?

    • Anonymous
      September 30, 2007 at 9:25 pm

      sense!

      It’s a complicated system our bodies, and our immune systems are only one of many to be learned about and understood.

      Ali, that you can be a spokesperson either directly or indirectly at such conferences is the kind of presence that few are ever allowed. The presence of a real person with CIDP puts a face to the problem probably far better than a bunch of words. I suspect also that attending such a conference is more than an exhausting experience, I know I would be worn out for ages! I for one, appreciate your efforts.

      I do believe that there are several papers from the UK tho about the positive aspects of Physical Therapy in GBS recovery..many published in the last year so they shouldn’t be hard to find at all. I don’t immediately recall if that is in combination with IVIG therapy however…

    • September 30, 2007 at 9:46 pm

      Hi Ali!

      Thanks for the info! I admire the courage it took to attend such a seminar with educated professionals. More so, I admire the courage it took to acknowledge publicly that you may have been mistaken on some info. You offer tons of help, a lending ear and a big heart. I am positive that you offer all of those things to more than just me! It must be hard being strong for others when you too have the same issues. SOOOO! Thanks for going to the seminar and sharing with us the knowledge you gained! And thanks for being a great person with a big ear!
      Love,
      Dawn

    • Anonymous
      October 1, 2007 at 6:54 am

      Homeagain : Yes, physical therapy plays a BIG part in recovery. Carole Leiper, PT, PhD spoke to that on Friday.

    • Anonymous
      October 2, 2007 at 3:44 am

      Thank you Ali, that took tremendous courage to ask that in front of all the proffessionals. You also helped to clarify some for me as well.

      Blu

    • Anonymous
      October 2, 2007 at 11:08 pm

      the sensibilities of what we have to deal with.

      It was only because I’d been very active in sports and sports therapy [not needed for me, but others] that After my onset I had to ASK for PT, I’d noticed the muscle tone loss and other reflex losses and knew instinctively that that should be IN the program…Neuro at first, as many do…kind of went HUH? then OK…they are thinking soo much on the ‘diagnostic’ track they often forget the whole person. Since then with two severe falls resulting in fractures that have kept me off my feet[for 2+ month periods] then starting the PT all over again…well, I’ve found lots of web sites, good legit ones that not only help refresh what you mite have done in the past, but others that are simple and even silly seeming that build up strength in those key ‘non-tiring’ increments…All stuff that can be done at home and if any doc prescribes a ‘home program’ to be learned and continued after the # of sessions are done…well, good work ON US can continue. It simply has to be learned to be DONE SAFELY at first…otherwise damages can be done in new and different ways no one wants.
      Key to that tho…is keeping it up! I gotta admit I am just as much of a procrastinator as the next guy and I do not pretend otherwise…But What I do and keep doing is/has always had benefit.
      Trying to exercise is simple, doing it safely and knowing that what is done IS safe is a different matter. It is hard to find the good sources, the safe ones, but I have and just ask me…. All be careful till later.