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Breakthrough Treatment for Guillain-Barre Syndrome in Clinical Trials

The first new treatment for Guillain-Barre Syndrome in 20 years is entering a Phase II clinical trial. It’s called eculizumab, which is a humanized monoclonal antibody first approved by the Food and Drug Administration in 2007 to treat a rare blood disorder.

In Guillain-Barre Syndrome, or GBS, the body’s immune system attacks part of the peripheral nervous system and often causes acute neuromuscular weakness. People with GBS may also experience numbness, tingling and blurred vision. Because this disease can affect respiratory muscles, some patients have be placed on a ventilator. Up to 30 percent of patients are left with a permanent disability, including some who cannot walk unassisted.

Two treatments, plasmapheresis and intravenous immunoglobulin, are currently used on patients with GBS, but medical experts continue to look for even better options, including eculizumab.

Neurologists believe controlling inflammation during the acute phase of GBS is key to reducing nerve injury and long-term neurological problems. Eculizumab may help do that by inhibiting activation of the body’s complement system. This component of the immune system may become overactive in GBS and damage nerve fibers. The Phase II clinical trial is being conducted by researchers at the University of Glasgow in Scotland and is expected to be complete by March of 2016.

The exact cause of GBS is not known, but it usually occurs after a respiratory or gastrointestinal infection. In some cases, the syndrome can be triggered by an immunization, including the influenza vaccine.

Adverse Reaction to a Vaccine?

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This Post Has 25 Comments

  1. Had a daughter was only 2.5 yrs old. Died of this She was sick only 3 days. This was in 1957. Has there been any progress. Should we get flu vaccine?

    1. My daughter had it at 2 1/2 also. Seven years ago this week. She did not get it from the flu shot. Her neurologist said to make sure she gets her flu shot every year. She is more likely to die of the flu than to get Guillain Barre again. So sorry for your loss.

      1. They really told u to have her get the flu shot? Once they see Shes had it,they are not to get the shot. The flu shot triggers it.

      2. Flu shots atr contraindicated for those with autoimmune/ GBS/immuno compromised people

      3. I was instructed under no circumstances to get a flu shot

      4. Every Flu consent in North America questions the patient about a history of GBS. Medical staff who have had GBS are not required to have a flu shot. While the correlation between GBS and the flu shot is small there is evidence it can trigger it.

    2. Oh Helen, I’m so sorry. My brother had it last year, at 27, he reached a full recovery.

  2. I had a very severe case of GBS with encephalitis in 83′. In my 25 years involved with GBS Community in Canada i have heard or met approximately 20 people who contracted GBS after the flu vaccine! When you consider 1.7 per 100,000 contract the disease, it is hard to believe only 1% of cases are caused by the H1N1 or other flu vaccination. In1976 the New Jersey Strain of Swine Flu Vaccination caused a 26 fold increase in GBS !

  3. Could this drug minimise or restrict the damage in CIDP?

  4. My son had this 3 yrs ago but a rare form from head down had two weeks of flu then become facial paralysed and moved down ..he had immunos and has recovered although is deaf and slightly slower on his left side he’s here and that’s all that counts..hope the research continues ..

  5. My son has GBS since 2010, and he caught this from the stomach virus. To this day he is on 4 different medication and deals with this weakness in his legs everyday. He is finally in high school and has trouble mantaining going to school for this. He is disabled for life and has to wear braces so he could beable to walk.

    1. , I had my flu shot in 2009 and have to wear braces to my left leg is paralyze with dropfoot I’m not around my core I cannot get my hands over my head all from the flu shot but it was Adam before never had a problem with that year they changed it to the swine flu it’s was late 2009 when I had it I spent over year in the hospital eight months with a breathing machine it started in my upper neck area and move down my body within 12 hours as an ICU I have no compensation did not know where to go I wife is a nurse and she’s going to figured it out I’ve never had any canning infusions I’ve asked God to help me each and every day to make it through I hope that someday there will be a cure I’ve been in a wheelchair for 5 1/2 six years now and walk very little with a walker but I try so hard I can drive now with my right leg wish that nobody would ever get this ever again Highhope that no one ever gets the flu shot they lie to us all it’s better to get the flu invited them to get the flu shot and be paralyzed for your life it only affects not only me but our whole family I have two sons in college and I have to watch their father struggle and not alone the income being cut is terrible we barely make it so much pressure on my wife 33 years of marriage and this is what she has to deal with a handicap cripple God bless you

  6. I have had GBS/CIDP for 5Years just ivig treatments in July of last year.. I was paralyzed from the neck down.. I am finally walking again.. but I have walking issues and chronic pain… I have my fingers crossed that this is going to work. As my father has the same thing I do.. He has had the, ivig, plazmapheresis, and steroids.. with no hope in site.. I ask, were do dad and I go from here, when we have exhausted all opinions… again.. I hope this is going to work… fingers crossed..

  7. My identical sister contracted GBS 2 weeks after a flu shot in November 2013. That sentence is very true – I will never take another flu shot – I will take my chances with the flu!!! My daughter developed A Fib with RVR’s one day after the flu shot she was required to take because she is an RN. She never had any heart problems or high blood pressure before – she was a healthy 32 year old young woman. No causes for her heart problems or high blood pressure were ever found. She is having heart ablation on the 19th of this month thanks to the flu shot!!!

  8. I had GBS last year in May after bronchitis. Very severe, but was started on IVIG right away for 5 days. Lots of hallucinations, etc. and was totally paralyzed, including part of my face. I already had a chronic pain issue even before this. So, after 10 days in the main hospital, 5 weeks in the transitional care unit, some home therapy and 5-1/2 months of out-patient therapy, I am finally able to walk (keeping a cane with me for tough places) and am participating in adaptive physical education. Never had to have a ventilator which is probably key here, but did have Afib and took beta blockers for three months after leaving the hospital. Very lucky to have been in a place where they know GBS well.

    1. Could I ask u where that place might b. My wife has had gbs now for about eight months r better has been totally paralized for about seven months now and cannot get no kinda help

    2. Could I ask u where that place might b. My wife has had gbs now for about eight months r better has been totally paralized for about seven months now and cannot get no kinda help

      1. We’re so sorry to hear about your wife’s situation. The research they’ve done took place at the University of Glasgow using the drug Eculizumab. You may want to look up Prof. Hugh J. Willison, who is conducting research on GBS treatments in the UK: http://www.gla.ac.uk/researchinstitutes/iii/staff/hughwillison/#/researchinterests
        Hope that information helps you and your family.

  9. I got the flu shot in 2009 Lightfall where’s got Guillain-Barré it moved down my body from my neck I spent over a year in the hospital eight months on a breathing machine I have been paralyzed ever since my left leg is got dropfoot I have we placed my left leg is basically paralyzed I numb all the way around my core I have kidney and bladder infection I have to catheterize I cannot get my hands over my head I was 46 years old with two children fixing to go to college my wife was a nurse and surgery and she’s doing it figured it out and move down my body which puzzled them I don’t ask anybody to ever get the flu shot to go to what I have I have to deal with in my day by day I have pain and neuropathy pain in my feet I hope that anybody that reads this does not get the flu shot the government does not tell us all the rest that are involved I live in Preidt day today that I will get through each day I have no compensation and probably never will someone told me you can get reimbursed for something some of the cost but I don’t know I hope that you read this and consider it please please understand this is a day-to-day basis it affects everybody been married 33 years and she has to deal with the crippled husband t it’s not fun at all every day there’s pain and sorrow emotional stress financial stress the list goes on please anybody that reads this do not take the blue shot I hope if anybody can give me information how to get reimbursed or what I can do to get better let me know infusions insurance doesn’t cover that anyway thanks for anybody that reads this God bless you

  10. I have an old case. I was an ER Tech when I received the vaccine in November 1976, as per the orders of President Ford. After developing the GBS I went thru the IV treatment and was intubated. I was lucky to improve enough to be D/C’d to my home. I was even able to return to my job in the ER, but then other problems arose.
    About 3 months after returning to my position, I was preparing to go to work. I had to get my uniform out of the dryer ( a great part about “scrubs” is you never have to iron them). I was walking up the stairs when my left leg failed, causing me to fall down the stairs, striking my head on the basement floor. I went to work with a bit of a headache. The ER doctor noticed the bruise so he ordered me to have a skull x-ray. I was diagnosed with a fractured skull.
    When I finished my shift, I was ordered to go to see my Neurologist (GBS follow-up). He made a call and I was then told I had to go to NIH for admission.
    The Doctors there took a lengthy history and physical exam. They then performed a Tensilon test. It was positive, and now, because of the GBS vaccine putting my immune system into permanent overdrive, I was diagnosed with Myasthenia Gravis.
    I had multiple muscle bx’s and a Thymectomy done. But this was fine because I was able to return to my job.
    Things were quiet for about 2 years, until I had a very odd fever. Odd because for 2 straight weeks I had a fever that never went over 103.9 and never below 103.0. More complicated tests were done, and SUPRISE I was diagnosed with Systemic Lupus Erythematosis.
    I was careful and was able to return to work in my ER. A major problem arose, because my medical problems required Prednisone to control my hyperactive immune system. Well, over the next few years Cushing’s Syndrome arose. At it’s worst, I peaked at 396 pounds, but still continued in my profession.
    A few years later, I had some strange petechiae on my entire body. I went to work and had a CBC done, and SUPRISE AGAIN! my platelet count was 1,100. The diagnosis was “AutoImmune ThromboCytopeniaPurpura”,
    Time to say so long to my Spleen
    Sorry to take so much time, but It’s part of the club, for you see I am the founder of the DOMC ( The Disease Of the Month Club ) Our Motto: ” The Disease Of the Month Club – You Name It And We’ll Get It.”
    One fine part of my history is that President Ford, after the GBS became a problem, issued an executive order eliminating any liability for the makers of the vaccines, and of course, the Federal Government can only be sued if the agree to it.
    Lucky me.

  11. I had this as a young child. I still have effects of it today and its been 32 years ago.

  12. What causes this? I’ve always wondered.

    1. VIRUS………..EPSTIEN BARR,CMV,CAMPLOBACTER VIRUS,HERPIES

  13. My mother has this. She came down with it in 2005, when she was 68 and had vasculitis on top of that. The inflammation of her blood vessels going to her organs shut down her kidneys. She was paralyzed from her neck down for a couple of weeks. Had to go through dialysis, then was moved to another hospital when they couldn’t get her shunt in her leg and out of her neck. She had the plasmapheresis along with prednisone and began to improve. She was about 6 mths in hospitals and rehabilitation facilities. She is still unable to walk and has limited feeling in her hands. Her kidney function is back to nearly normal. Her feet are completely numb and drop foot. She has to be in a wheelchair and can go some on a walker. Does all her own cooking and housework except for the deep cleaning and yard stuff. I have hoped for years that they would find some sort of cure for this, but sadly, I think it’s too late for my Mom…she has put on so much weight in this 14 yrs being in a wheelchair, it has affected her mobility as much as the disease.

  14. My Son, age 53, was given a flu shot in November 2016 and quickly developed GBS. He continues to have all the symptoms he had at the beginning and although he works out regularly, he gets fatigued every day and sleeps for 4-6 hours, he is in pain a lot,, he is irritable, he cannot concentrate, he cannot read , he suffers migraines, he is a very difficult person to be with. He was previously a charming, very personable, hard working young man with a great outlook for future promise. Now he is gloomy and doesn’t see any future for himself. I do not believe the government, which practically mandates flu shots for everyone, really understand or care about people with this disease, and there is very little useful research being done to deal with it. Compared with other diseases, many of which are far less insidious, the work done to combat GBS is virtually nothing
    I also believe the statistics by the government as to the numbers of people with GBS are flawed. I think many more people have GBS and the government has ignored them or altered the facts to make it sound like it is not very important.

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