By Michelle Greer, RN, MBA
In a previous blog, we started a discussion about weaning patients with CIDP off IVIG. In considering this adjustment, the first questions for the patient are: What are the chances there will be a relapse if the dose is lowered? Is it the treatment holding the disease in check or has the disease gone away?
For answers, we refer to the ICE trial that included a study interval where the patients who clearly had responded to IVIG were then placed into one of two groups that were compared to each other. Patients were either continued on the treatment for another six months, or were discontinued and placed on placebo. Not surprisingly, many more patients relapsed on the placebo than those who were continued on IVIG, giving more evidence that IVIG works. But, the relapse rate for the placebo group was only 50%. This means that in about half of the individuals who had IVIG stopped, the disease had become inactive at some point. They no longer needed IVIG. There are other lines of evidence that back this up because it has been known for some time that a good percentage of cases of CIDP do go into remission.
So we can see that the only easy way to find out if a stable patient is in remission on IVIG is to stop the treatment. The alternative is to simply take IVIG forever, out of the fear of relapse. Because no treatment is risk free, why take it if you don't have to? Clearly, if the disease is active, there will usually be some sign of fluctuation, with intermittent worsening that would be a clue to increase the dose or change meds, and certainly not to begin a dose taper. However, if the disease is just slowly getting better, or is very stable for months on treatment, the inflammatory process that initially injured the nerves may have stopped. The question now becomes what’s the best way to taper?
There are a lot of opinions about this, with some doctors recommending gradually lowering doses or lengthening intervals between treatments. However, what you are trying to figure out is whether the disease is still active. The best way to do that is to force the question. Therefore, I would suggest the ultimate lengthening of the dose interval, which is just stopping the IVIG. If the patient relapses, the question is answered and treatment can be restarted again. If a year were to go by before the relapse, that is a year that one doesn't have to take treatment. If a relapse never happens, all the better. Again, the ICE trial supports this approach in showing that half of patients will not relapse for at least six months. The argument for a slow taper is mainly fear of relapse, but once the dose gets low enough, a relapse will occur anyway because there is nothing to indicate that slower tapers prevent a relapse from occurring.
Finally, several insurance companies mandate this approach. I cannot argue. The benefit of not having to be on a treatment forever is clear, and stopping medications that are not needed also saves a lot of money. When considering treatment adjustments, it follows that documentation is vital, including why the diagnosis was made, objective before and after examinations that document the recovery of strength, clear nerve conduction reports, and the rationale for continuing or stopping therapy. All in all, the idea of tapering, in the right patient for the right reasons, is rational.