You may be wondering what the heck is a “crap gap” and is it really a medical term used in Multiple Sclerosis (MS) treatments. Yes -it really is. The “Crap gap” is the period of time between doses of your scheduled disease-modifying therapy (DMT)when you are soon to be due for your next treatment and the benefits from the last one have worn off. During that period of time, you may experience fatigue, brain fog (cognitive impairment), and other symptoms, such as worsened gait, weakness, emotional changes, and pain. Clinicians more often refer to this as this as the “end-of-dosing-interval” (EDI) effect or a “wearing-off” phenomenon. It does not represent disease progression or a new flare. The way to make the distinction between active disease and loss of medication effect is the timing (i.e. 2 weeks before your next scheduled treatment), repeated occurrence each time you are due for another treatment, and whether the symptoms are the same ones you have had in the past. If you develop a new symptom that you have not experienced in the past, it is likely it is not “crap-gap” and should prompt a call to your doctor.
Certain DMT’s are associated with a greater “crap gap than others. The “crap-gap” is more often associated with infusions than with injections but can happen with either. The DMT’s most likely to be associated with the “crap gap” are Ocrevus, Briumvi, Tysabri and Kesimpta. It is less likely to occur with medications with a more frequency dosing interval. One approach would be to talk to your physician about considering a different DMT that is reputed to have less “crap gap”. The trade-off is that many of the therapies associated most strongly with the “crap gap” may be the most effective in controlling your disease. The reasons for the loss of effect between dosing may be due to decreasing concentration of the medication in the body as time goes on. (a drug’s timeline for maintaining levels is called “half-life). For the anti-CD20 therapies (like Ocrevus), the return of symptoms is likely due to the return of the immune cells the therapy is meant to deplete.
Another approach to managing the “crap gap” is managing the expectations of both you and those with whom you interact (family, friends, coworkers). This is referred to as “spoon therapy”. Plan ahead-prioritizing what can wait and what cannot. Seeks outside help from an aide, a housecleaner, a babysitter or anyone else who can take some of your burdens off your plate. If cognitive impairment is one of your greatest struggles, rely more on AI and ChatGPT to organize yourself.
Your neurologist may be able to offer you medications that address the symptoms that become more prominent during this time, such as for fatigue, spasms or pain.
The most important thing is to listen to your body. Don’t try to push through. Rather, give in to an extra nap or break during the day. Don’t be angry with yourself or the world. As cruel as it may sound, accept this as your new normal (until the next med comes around) which will keep you from repeated disappointment.
BeCare MS can help by monitoring your neurologic function during the “crap gap” and for signs of new dysfunction. Further, you can get helpful advice from BeCare’s AI assistant and support from our valued BeCare community of users. Be empowered, become a driver in your neurologic health journey.