replacement for IVIg?

    • Anonymous
      February 27, 2007 at 3:40 am

      One of the GBSers on the east side of the Pond posted this to the UK forums. Thought it might be of interest.


      Science Daily — By pinpointing the mechanism through which an intravenous therapy combats chronic inflammatory diseases, researchers have discovered that they may be able to replace the time-consuming infusion therapy with an injection that could be given during a quick office visit. Investigators at Hospital for Special Surgery in New York City have discovered that intravenous immune globulin (IVIG) or antibody therapy works, in part, by attaching to a receptor known as Fc³RIII and blocking the function of interferon gamma, a major inflammatory factor. Only a small component of the IVIG solution, 0.5%, is responsible for blocking this receptor.

      “The study suggests that it’s not the whole preparation itself, but the immune complexes within the preparation that are causing the therapeutic effect,” said Lionel Ivashkiv, M,D,, director of Basic Research at Hospital for Special Surgery (HSS) who led the study. Instead of using IVIG, which is pooled from thousands of blood donors, clinicians may be able to use small amounts of so-called immune complexes, or even design synthetic drugs that will avoid problems, such as potential exposure to infectious agents, that are associated with using blood products.

      The study appears in the January 2007 issue of the journal Immunity.

      For years, doctors have used IVIG to treat patients with autoimmune and chronic inflammatory diseases, such as dermatomyositis, Kawasaki disease, multiple sclerosis, lupus, chronic lymphocytic leukemia, and idiopathic thrombocytopenic purpura, but just how the therapy works has remained a mystery. Some researchers have shown that IVIG works, in part, by activating a receptor known as Fc³RIIb, which then suppresses auto-antibody-mediated inflammation. HSS researchers wondered whether an immune system protein called interferon gamma (IFN-³) could be involved–many chronic inflammatory and autoimmune diseases are caused or exacerbated by an overexpression of this protein.

      To test their theory, the investigators turned to macrophages, immune cells that engulf bacteria and are stimulated to kill their prey by IFN-³. The researchers found that in test tube studies of macrophages, IVIG could inhibit the action of IFN-³ signaling.

      Next, they tested the effects of IVIG in mice infected with Listeria monocytogenes, a bacteria that is usually controlled by IFN-³. They found that mice treated with IVIG, because of the suppression of IFN-³, had much more severe infections than mice treated with saline. Experiments in a mouse model of immune thrombocytopenic purpura also revealed that immune globulin inhibited IFN-³. IVIG sparks this inhibition by docking on a receptor called Fc³RIII.

      In another experiment, researchers turned their focus to a different question–which component of IVIG is responsible for its therapeutic effects. IVIG is composed of 99.5% monomeric IgG and 0.5% so-called immune complexes. The researchers cultured macrophages with the different IVIG components and discovered that the immune complexes were responsible for the suppression of IFN-³.

      “This study suggests that we can move away from using these IVIG preparations and generate very defined (synthetic) immune complexes, which have the potential to work better, be easier to deliver, and have fewer problems in terms of the infusion part of the therapy,” Dr. Ivashkiv said.

      Usually, patients must receive IVIG infusions in the hospital setting, which can involve three to four hours per day, for three consecutive days. “IVIG is time intensive, it’s somewhat expensive, and there are sometimes shortages, because it’s a human product,” Dr. Ivashkiv explained. “A lot of the limitations of the therapy is just the volume and the quantity of the material that is used. Some people get volume overload or severe allergic reactions.”

      If clinicians can deliver only the active agent of IVIG and/or design immune complexes with recombinant materials, they may be able to avoid many of these problems, say researchers. “It could be done as an injection, as part of an office visit,” commented Dr. Ivashkiv.

    • Anonymous
      February 27, 2007 at 9:40 am

      Thanks fo the info.
      Hope that works out to help GBS CIDP treatmeny.

    • Anonymous
      February 27, 2007 at 10:16 am

      Very informative and interesting.

      Thanks for info.

    • Anonymous
      February 27, 2007 at 12:06 pm

      Thanks for the hope for the future!:D

    • Anonymous
      February 27, 2007 at 2:58 pm

      That is SUPER information. I was not happy with the info I read about IVIG – the side effects and the fact that the product was collected from many people. So I was fortunate in that I did not need to be on a respirator which was MY barometer for needing IVIG. But I had weeks to research it as I got worse and worse – my second experience with GBS. Your info gives me hope that if I ever get it again – a third time – that perhaps there will be a way to stop it. Just when I was able to travel – I got GBS. Now I cannot go to the countries that I wanted to visit because I need vaccinations – like Egypt, Morocco, Tibet,India. And I am too scared to chance it. PLease keep us informed if you can about this new technique.

    • Anonymous
      February 27, 2007 at 3:05 pm

      Thanks for the information. Please keep us all updated it this becomes available to the public.

    • Anonymous
      February 27, 2007 at 4:10 pm

      Thanks for posting that, Deb. I’m volunteering to be a guinea pig if it comes to my neuro soon. especially since i’m not able to use ivig.:)

    • Anonymous
      February 28, 2007 at 4:34 am

      My mom (69) has been diagnosed with CIDP 3 weeks ago. She is deteriorating daily to the extent that the no longer can walk! Her Neurologist today has given her the option of Immuglobulin drips but has warned about the side effects, as the only option now. She has osteop. therefore she cannot go for the other treatments. Can anybody tell me what they do to you with these drips what do you feel like etc. \and will this help?!

      She does physio and is seeing a homeopath to see if we can get her walking again. Please tell me if we fighting a losing battle here?! She was healthy, driving, walking , working four weeks ago…..This is very, very overwealming.

    • Anonymous
      February 28, 2007 at 11:20 am


      I’m curious about your moms CIDP diagnosis. You say she was healthy 4 weeks ago, and in the past 3 weeks has gone down hill. Why do they think it is CIDP and not GBS, did they say? GBS is a quick onset 1-4 weeks, so it sounds like it may fit better. However I am not a doctor or neurologist and thats whey I was curious whey the CIDP diagnosis.

      Many, many GBS’ers and CIDP’ers get IVIg with no ill effects and it helps them tremendously.

    • Anonymous
      February 28, 2007 at 11:23 am

      I know I keep posting this article, well, ever since it came out, but I feel Tania should read this


      [B][FONT=Arial][SIZE=5]What’s In a Name? Important Differences
      Between GBS, CIDP and Related Disorders[/SIZE][/FONT][/B]
      [SIZE=2][I]__________________________________________________ ______________________

      David S. Saperstein, M.D., Phoenix Neurological Associates, Phoenix, AZ[/I][/SIZE]

      [FONT=arial][SIZE=2]This article will discuss the differences between Guillain Barre Syndrome (GBS) and related conditions. Recently I have seen cases where misunderstanding of these concepts led to less than ideal management. I have also frequently observed confusion about terminology among patients and physicians.

      [/SIZE][/FONT][FONT=arial][SIZE=2]GBS may also be referred to as acute inflammatory demyelinating polyneuropathy (AIDP). This emphasizes the acute nature of this disorder: symptoms come on abruptly and progress rather quickly. Symptoms stop progressing, often within 2 weeks, and usually not more than 4 weeks. After a period of weeks to months, patients then begin to experience improvement. Although the majority of patients with GBS will do rather well, not all patients will recover fully and may experience chronic weakness, numbness, fatigue or pain. Once symptoms stabilize, there is rarely any further deterioration.

      [/SIZE][/FONT][FONT=arial][SIZE=2]Chronic inflammatory demyelinating polyneuropathy (CIDP) produces manifestations similar to GBS, but there are important differences. Symptoms tend to come on more slowly and progress for a longer period of time. Patients may stabilize and recover, but then experience a return of symptoms in the future (this is referred to as the relapsing form of CIDP). Alternatively, patients may experience progressive CIDP wherein there is slow, continuous progression without a period of stabilization. By definition, if there is progression of symptoms beyond 8 weeks, the patient has CIDP. Patients with CIDP often need sustained treatment, but many experience complete remission or at least improve and stabilize on medication.

      [/SIZE][/FONT][FONT=arial][SIZE=2]A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less than 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below).

      [/SIZE][/FONT][FONT=arial][SIZE=2]The most important reasons for distinguishing between GBS, SIDP and CIDP are to help anticipate outcome and to determine the optimal therapy. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE. However, most do not. Therefore, repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated.

      [/SIZE][/FONT][FONT=arial][SIZE=2]A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued [I]progression[/I] of symptoms (not continued [I]persistence[/I] of symptoms).

      [/SIZE][/FONT][FONT=arial][SIZE=2]In contrast to GBS, CIDP patients are treated with repeated courses of IVIg or PE (or daily doses of other medications such as prednisone, azathioprine, cyclosporine or mycophenolate mofetil). Without sustained treatment, patients with CIDP will usually relapse and continue to worsen. Over time, the amount of medication can be decreased in many patients and, in some patients, treatment can be discontinued entirely.

      [/SIZE][/FONT][FONT=arial][SIZE=2]Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIg or PE. This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.

      [/SIZE][/FONT][FONT=arial][SIZE=2]Now that I have defined the syndromes, I would like to give some examples of how incomplete appreciation of these disorders can lead to misunderstandings regarding therapy. I have seen several patients with SIDP diagnosed with GBS and treated with a single course of IVIg or PE. That is appropriate, but then when these patients subsequently worsened after a few weeks or months, they were either not re-treated or they were repeatedly treated with just a single course of therapy. They would improve and then worsen again and again. In such cases, continued treatment is needed to stabilize these patients (such as IVIg administered every month). A different error is to give a GBS patient IVIg or PE to treat chronic, stable, persistent symptoms. These treatments will not help. Recall that the persistent symptoms are due to damaged nerves. At the current time, we do not have therapies to restore the damaged nerves (but there are medications that can be used to help nerve pain).

      [/SIZE][/FONT][FONT=arial][SIZE=2]Hopefully this review has helped clarify the distinctions between GBS, SIDP and CIDP and illustrate the differing outcomes and treatment approaches for these disorders. [/SIZE][/FONT][SIZE=2]
      Article from the Summer 2006 GBS Newsletter[/B][/SIZE]


    • Anonymous
      March 1, 2007 at 3:44 am

      Hi, Tania, and welcome to the forums–although we wish you didn’t have reason to come!

      First, you might want to repost your query to the CIDP forum. I’m afraid it’ll get lost on this thread, and more CIDPers will notice it on the CIDP forum.

      I agree with Ali–if the course has been so rapid, why aren’t the doctors thinking GBS rather than CIDP? No doubt, there’s a good reason, but it would be interesting to know.

      And now for a shameless plug for the UK group: we have a very informative booklet online on CIDP at [url][/url], as well as other articles on GBS-related disorders through our Web site at [url][/url]. We also have forums where you’ll find some very helpful people.

      IVIg is used early on in treating GBS as well as continuing for CIDP, so regardless of which your mum has, IVIg should help. Most people find there are fewer side effects from IVIg than other treatments such as corticosteroids (prednisolone) or plasmaphersis. Many of us premed with Benadryl or something similar–be sure she mentions to the nurse administering the IVIg that she’s taken it before they start.

      IVIg is done by inserting a cannula into a vein–for most that’s the worst part. They’ll flush the tube and then start a bottle dripping. Some nurses will snake the tube through an electronic drip monitor, others (as mine) just use a little tube regulator–things are done differently in different areas. They’ll start the drip quite slowly, and once they’re sure there’s no adverse reaction (a very few people will have allergic symptoms, thus the Benadryl), speed it up. And the patient just sits as the stuff drips in, usually over the course of six to eight hours, and usually over several days. Some nurses will leave the cannula in for several days, others will change it daily. If she has CIDP, she may see improvement in a matter of days (although some take longer–no two of us with CIDP are alike).

      At any rate, keep in touch with us and know that you’re not alone. CIDP is rare, but you’ll find a number of CIDPers and carers here.

      Best wishes in the battle,


    • Anonymous
      March 1, 2007 at 6:24 am


      Thank you Thank you Thank you. Mom has decided and it looks like she will be going in for IVIG on Monday. I actually don’t know why Neuro diag. CIPD and not GBS.

      She had a bad stint March/April 2006 where she was hospitalized – end result was a gallbladder and anemia?!?…. She recovered and was really well except for the tingeling/numb hand and feet, untill Early Feb when it starting effecting her leg muscles, making walking a huge effort and some times almost imposible.

      We are really hopefull that the IVIG will get her walking again and give her back her independence.

      This forum has opened a world to both her and I as we didn’t know where to go or what to do – Thank you for your input and we will keep in touch.

      Onwards, forwards

    • Anonymous
      March 1, 2007 at 6:39 am


      Thank you for the information posted. I don’t know why CIDP and not GBS. I will ask the Neuro asap. I have printed the article and given it to Mom just know – it is of tremendous help! Thank you.

      I will keep in touch.