For what’s its worth, I’ve had long covid for 2 years beginning a week after my first covid infection resolved. My symptoms are primarily neurological (relatively severe) and cardio/circulatory. I’ve been essentially house bound with periods of being bed bound. I don’t have PEM or crushing fatigue (more so constant malaise and disabling neuro symptoms) I received Pemgarda 4 weeks ago and the improvement thus far is pretty amazing. Nothing I tried prior to Pemgarda had any meaningful impact. Below is a short synopsis.
Week 1: The infusion was uneventful. Tinnitus caused by LC flared during the infusion, which was the only side effect. On day 1, I felt a little fatigued. During the remainder of week 1, I felt better than I’ve felt in two years. Cardio/circulatory symptoms fully resolved and my head felt clearer and more normal than it’s felt in 2 years. Most of the odd neuro feelings that are difficult to put into words also subsided. Put simply, my brain felt like me again.
Week 2: I began feeling like I might be getting sick or experiencing some sort of mild immune activation. This flared LC symptoms (like an abbreviated relapse) and I felt somewhat worse then pre-Pemgarda for the remainder of the week, though nowhere near peak LC bad.
Week 3/4: Beginning with week 3, I started having periods of feeling entirely normal from the early afternoon onward. This trend has continued throughout week 4.
At this point, cardio/circulatory symptoms (pots, freezing hand and feet, high heart rate with minimal exertion, adrenalin surges/nausea) remain 100% gone. LC caused a complete loss of appetite. I lost 50lbs/200lbs and have been at my middle school weight as a 46 year old male for almost 2 years. I’ve gain 5lbs back in the last month, which is the first time I’ve regained weight. I developed near constant eye pain (dry/swollen) and loss of close up and night vision during the acute Covid infection. In the past week, my eyes are nearly normal once again. The worst of my neuro symptoms (acute suicidal ideation, psychosis like episodes, low oxygen like feeling in brain and partial loss of consciousness) have also subsided.
At this point, mornings are still rough as they’ve been throughout LC. I wake up feeling drugged or concussed. It typically takes an hour to force myself out of bed and then another hour or so before my head is clear enough to function. However, post-Pemgarda, once the awful morning issues clear, I feel pretty close to normal for the remainder of the day. All in, I would put it at a 75% improvement including resolution of all non-neurological symptoms.
Prior to Pemgarda, I was not a big believer in viral/antigen persistence. I would have put my money on something along the lines of Jonathan’s hypothesis. However, at least in my case, there is absolutely zero doubt in my mind that Pemgarda has done something very positive and it’s difficult to imagine what Pemgarda could be doing aside from binding to antigen.
www.invivyd.com
