Rare, But Serious In SLE:
By A. G. Moore 6/7/2013
Sometimes, when I start writing a blog, it seems the information I’ve gathered will be of little use to most lupus patients. But then I remember, it’s the rare stuff that can trip up a doctor, and a patient. Such is the case with Guillain-Barré Syndrome. This disorder is so unusual as a manifestation of lupus that nobody really knows what the actual incidence is. A major challenge is recognizing that someone who has Guillain-Barré also has lupus.
Guillain-Barré is an autoimmune neurological disorder which is characterized by paralysis. The syndrome can be triggered by a number of things; systemic lupus is one of the rarer causes. More commonly, the syndrome may occur after a bout with influenza–or maybe even after receiving an influenza vaccine. In 1976, there was an uptick in Guillain-Barré cases after a campaign to vaccinate against a strain of swine flu was initiated. The association between Guillain-Barré and the vaccine was so strong, that the inoculation program was suspended. Subsequent flu vaccine campaigns have not seen the same kind of uptick, though there is always a slight increase in Guillain-Barré cases associated with flu inoculation.
Prompt treatment–with immunoglobulins and support–is generally effective, but fatalities do occur. When Guillain-Barré is an expression of lupus, effective treatment may be delayed because there’s no specific protocol for treating lupus-associated Guillain-Barré. Also, it may not be evident to a physician that the patient being treated has lupus. In this case “conventional” therapies will be tried and these may not work well.
It seems that the most effective path for dealing with lupus-associated Guillain Barré may be to treat the lupus. However, there is not enough data to confirm that this approach is best. As one researcher from the University of Maryland reported, There don’t seem to be any studies trying to systematically study the relationship between SLE and GBS. This is clearly an area where more research can be done.
Despite the paucity of studies on lupus-associated Guillain-Barré, some case reports exist. One, from the University of Puerto Rico Medical School, suggests that administration of classic lupus drugs–a combination of glucocorticoids and cyclophosphamide–is a more effective course than “conventional” Guillain-Barré protocols (immunoglobulin and plasmapherisis ).
I think the most important message to take away from the few reports on Guillain-Barré and lupus is this: if you have lupus, you should always consult a specialist in this disease when you are ill. No matter the condition, it is likely that lupus will influence the outcome. In the case of Guillain-Barré, a doctor not informed about the different treatment options for lupus might persist in following “conventional” protocols.
There is a second message I think we should take from this discussion: even if you don’t have lupus, get treated by the smartest, most astute physician you can find. Make sure the doctor practices in a first-rate medical facility. It’s hard to know how many people who have had Guillain-Barré have also had lupus because diagnosing this combination is a challenge. In some cases, Guillain-Barré is the first symptom of lupus. If the proper tests are not run, if a good, clear, analytic intellect is not interpreting those tests, lupus may be overlooked. And the chance of a successful outcome for the patient in this situation is not very good.
For more information about Guillain-Barré and lupus you can read the following two case reports: