GBSFI Summer/2003 Newsletter…

Doug,
[QUOTE]At the same time, could I live with myself if I had a recurrence of GBS due to the flu-shot (which is also a likely low-risk, albeit nobody really knows yet)? Yes, I could, knowing that I may have protected my family in some small way, even if very, very low odds. (Again, selfish peace of mind).[/QUOTE] The following is from the Summer/2003 GBSFI Newsletter, [I]The Communicator.[/I] [B]Safety of Immunizations for Guillain-Barre’ Syndrome Patients[/B] By Joel Steinberg, MD, PhD

Guillain-Barre’ syndrome (GBS) briefly came to public attention in the fall of 1976 when it developed in an unusually large number of people who had received 1976 swine flu shots. More recently, rare mild increases in GBS cases have been associated with influenza immunizations. These events have raised concerns among GBS patients about the safety of immunizations. Most recommendations about immunizations have been derived from experiences with the population at large. The general teaching has been that most former GBS patients who would otherwise be a candidate for an immunization should still likely receive it, with rare exceptions. But what about the actual experiences of GBS patients with immunizations? Through the efforts of our sister organization, the Guillain-Barre’ Syndrome Support Group of the United Kingdom, data was collected from a large body of patients, and reported by Drs. J. Prichard, R. Mukhergjee, and R.A.C. Hughes of Guy’s, of the King’s and St. Thomas’ School of Medicine, Dept. of Clinical Neurosciences, London ([I]J Neurol Neurosurg Psychiatry[/I] 73:348-9, 2002). [U]Of 311 GBS patients[/U] who, after recovering, received an immunization, [B][U]only one got sick enough to prevent walking.[/U][/B]; [U]ten other patients developed mild symptoms such as abnormal sensations, weakness or fatigue, but they did not require hospital care.[/U] Information about exactly what type of disorder these patients developed was not available.
[B][U]However, the low risk of substantial problems, in one patient out of 311,[/U][/B] or 0.3%, suggest that most immunizations are safe for most recovered GBS patients.

The general approach to making a decision about the safety of immunizations is pased on compring the risks of developing an illness and its complications with the risks of developing complictions from the immunization that is used to prevent it. [B][U]By and large, the risks of complications from the flu are substantially greater than the small risk of side effects from the flu shot.[/U][/B] Accordingly, the flu shot appears to be relatively safe for most candidates for it, including most former GBS patients.

If however, a patient’s GBS followed shortly after receiving an immunization, within two weeks or so, it would likely be unwise to receive that immunization again.

Finally, it is likely best for a patient with GBS to wait at least a year after its onset to receive an immunization, in order to help assure that the immune system is now stable and in normal working order. [U]Ultimately, the best approach to decision making about various immunizations is to discuss the pros and cons with the family physician who can take the patient’s individual medical history into account to help offer a recommendation.[/U] [B]END[/B]

[B]FACTS AND QUESTIONS:[/B]
[QUOTE]1. Of 311 GBS patients who, after recovering, received and immunization, only 1 got sick enough to prevent walking; 10 other patients developed mild symptoms such as abnormal sensations, weakness or fatigue, but they did not require hospital care.[/QUOTE] So, it appears that 1 person definately had a case of GBS. Now, 10 more with “abnormal sensations (pins and needles), weakness and fatigue” – this sounds familiar, and any knowledgable neurologist would diagnose GBS after they received a flu shot. So, it really looks like there was 1 confirmed case of GBS and 10 relapses back to GBS from the 311 patients.
[QUOTE]2. According to the CDC statistics (in 2003), only 1 person in 1 million that get a flu shot will get GBS from the flu shot, or approximately 60 per year (out of 60,000,000 that get the flu shot).[/QUOTE] So, 11 out of 311 doesn’t sound very good when compared with the CDC stats. In fact, that’s about 33,000 times the CDC numbers – wow! And the flu shot is still recommended?
[QUOTE]3. Information about exactly what type of disorder these patients developed was not available.[/QUOTE] It would appear that all it would have taken is a phone call to find out the information. After all, the data was at GBSFI’s sister organization, the Guillain-Barre’ Syndrome Support Group of the United Kingdom. How difficult could that be?
[QUOTE]4. However, the low risk of substantial problems, in one patient out of 311, or 0.3%, suggest that most immunizations are safe for most recovered GBS patients.[/QUOTE] Surely GBSFI knew the CDC statistics on flu shots…and it’s not 1 (which would be more than 3,200 times the CDC number), it’s 11 patients (over 33,000), check the math, and get the records. It sounds like “the dog ate my homework”…how difficult could it be to get the medical data?
[QUOTE]5. Ultimately, the best approach to decision making about various immunizations is to discuss the pros and cons with the family physician who can take the patient’s individual medical history into account to help offer a recommendation.[/QUOTE] After the eradication of polio, Guillain-Barre’ syndrome is now the most common cause of acute flaccid paralysis worldwide. One of the main problems is the lack of experience in general doctors, emergency doctors, and some neurologist in recognizing the symptoms of GBS quickly so that treatment can be started. This is because GBS is rare, and asking advice from my family physician about GBS and a flu shot (in my opinion) would be about like asking a pig when Sunday comes. The fact is, doctors are part of the bureaucracy…the money loop that helps protect the need for the useless influenza vaccine.

As always, these are my opinions.

This issue is not listed in the FYI at gbs-cidp.org.

Regards to all.

Jethro