My recent experience of having Covid and being hospitalized with some SLCS-like symptoms:

 

Feb 25/26 – Fever of 100.0F, Diagnosed with Covid, my first time with Covid, first time with any type of flu in 15+ years. I left a note for my Hematologist (familiar with my SCLS), and he prescribed Paxlovid. He also mentioned to take a half a normal dose of Nadolol that evening.

 

Feb 27 – Woke up around 1am, felt exactly like I have in the past with an acute SCLS attack (malaise, warm, adrenaline). I walked over to the kitchen to test the hemoglobin in my blood with a meter. I felt like I was going to pass out. I set everything up for the test and did the finger poke, and the next thing I remember was waking up on the floor. It took a few tries to get up, but I eventually did the test and made it back to the couch. My hemoglobin was only about 0.4 high. My BP was normal, and my heart rate was normal (78). I called for an ambulance and went to the hospital. It also turned out I had hit my head on the wall and had an abrasion.

 

At the hospital, I passed out a couple more times as they took blood samples and an EKG, and they expedited me to a room.  Blood tests at the hospital showed low sodium (134), slightly low co2 (21), albumin normal (3.8), WBC slightly high (10.1), hemoglobin high (17.4, 16.5 normal), hematocrit high (50.3%, 48% normal), and most other things normal (or normal for active covid)

 

I gave the ER doctor the “cheat sheet” on SCLS treatment, and since things were not really dire at the time, I ended up in a “step-down unit”, i.e. criticality between ICU and a regular room. I was given albumin for fluids and felt immediately better. For the covid treatment I was switched to Remdesivir and also given Dexamethasone.

 

Since the fluids were limited, I did not have the “fluid overload” symptoms a couple days later.

 

The big question everyone had: was this an acute SCLS attack triggered by Covid, a reaction between the Paxlovid and Nadolol, or some sort of combination. The short answer is that it’s not been determined (and probably never will be).

 

Evidence for: 1) it felt the same, 2) the time frame from Covid to the attack is consistent with other attacks brought on by other triggers like vaccinations, 3) high hemo., 4) feeling better after fluids, 5) this is not a documented interaction with Paxlovid and Nadolol

 

Evidence against: 1) normal HR, 2) normal BP, 3) normal albumin, 4) IVIG 7 days prior, 5) no weight gain prior to the event. 6) normal urine volume, 7) WBC was probably high because of an active infection, 8) none of the abnormal blood numbers were close to what they were when I did have SCLS attacks.

 

I guess the bottom line is to remain cautious, and even if this was an SCLS attack, it was not nearly as bad as they have been in the past. I was out of the hospital in 36 hours.

 

This is the first time I’ve been hospitalized in over 4 years, and I started IVIG slightly over 3 years ago. As far as the covid symptoms went, it was not really that bad, mostly a sore throat, headache, some fatigue.

 

I'm sorry you went through this but glad it wasn't so much worse. So strange to have so many of the symptoms but for your numbers to be relatively normal. Maybe because you were so aware and took yourself to the hospital so quickly?? Maybe this was the very early stages. I'm curious to know how the ER took the 'cheat sheet.' My concern is always that they won't take me seriously. Also, have you had vaccines trigger attacks before? I have (covid) and I'm trying to decide about the vaccines I'm supposed to get now that I'm 50+. Thanks, and keep feeling better!

jenh: I had the same worry. I did mention the SCLS and that might have piqued their curiosity. The NP took a photo of the cheat-sheet. Her and the doctor did mention there was a concern for the SCLS being a factor and that's why they got me into a step-down room over a standard room. They were very careful with the fluid administration too, using Albumin, which is a colloid from my understanding.   Prior to even knowing what SCLS was, I did have 3 likely SCLS attacks after receiving a vaccination. One was from a standard flu vaccine, and the other two were from Dose #2 and Dose #3 (booster) of the Covid vaccine. All of them happened pretty much 48 hours after it was given. Everyone is different, and since my SCLS attacks are not as bad as others, for me they recommend not getting a vaccine. If they felt contracting covid would be worse, I think the recommendation would be different. I'm 55.

Are you saying you have covid right now?  Please follow up how that goes. (or are you saying you had an attack after a covid vaccine?)

I had a major attack after getting the second dose of the covid vaccine in February 2021. (I was patient #2 in one of Dr. Druey's papers, Severe Exacerbations of SCLS After Covid Vaccination). I've refused to get the covid boosters since, and I've (knowingly) had covid once in December 2022. (Dr. Druey invited me to NIH to get my IVIG treatment there because the cancer center where I usually get my treatments didn't want me around their patients. It was a whole thing.) I'm thinking about whether I should get the shingles vaccine. One doctor suggested I only get the first dose. Did you get that one? I think there's a pneumonia one they'll soon suggest as well. 
 

Glad to hear your case piqued the doctors' interest in the ER and they listened to you!!

My guess is your were having an SCLS episode, but your blood was drawn early in the cascade so didn't show big abnormals, but did show trending abnormals in WBC and RBC. 

My rationale is based on my own experience.

My first episode was one of my worst while I was traveling in Spain. Had no idea what was happening to me and no easy access to medical care. As long as I laid in bed, I felt ok. So, I was in bed for 2-3 of the worst days. We talked about flying me home because we were going to embark on a 5 day 85 mile hike of the Camino trail. Somehow, I did get through that. The worst of it had passed and we went slow and took many breaks.

I had several more episodes over five years but didn't get my diagnosis until after the one that landed me in the hospital for 8 days triggered by Covid. My Covid symptoms were minimal, but the SCLS episodes were awful. Since I was still undiagnosed all I could tell them is that it was this thing that happens to me in response to illness. At first, the nurses kept blaming it all on Covid, but by the end the doctors knew it was something else...but couldn't figure out what. They said my WBC far exceeded anything they would see with Covid. They thought I had sepsis for a bit but that didn't bear out. They managed me through it but because none of us knew my dx, they poured fluids into me because of my rapidly dropped blood pressure. Gained 30 pounds in the hospital before they started diuretics. Lost it all in FOUR days.  In any case,  they encouraged me to go to Mayo if I could get in. I could, easily, as my DIL is a doctor there and she got me in within two weeks. Finally a diagnosis came. 

I sought medical care two other times. The minute my second episode hit, I hightailed it to my doctor the day I felt symptoms starting. My labs were mostly normal, and the abnormaties I had were not abnormal enough to sound any alarms. My symptoms worsened of course the next days and I called my doctor back and begged her to run more tests. She ordered many many more disease related tests, ordered chest x-rays and a echocardiogram. The only thing discovered was my MGUS (seen in 80 percent of patients with SCLS) ..which sent me to a hematologist who suggested they were autoimmune flares and to just sleep it off when it happened. Its just such a rare disease that he didn't know that connection as it related to my symptoms of SCLS. So I did sleep it off in bed  a couple of times. The first covid Moderna did not provoke an attack. The next Pfizer one did and I slept it off. The third one caused a pretty severe attack ...went to ER. They didn't do any bloodwork...just did an EKG because my heart rate was elevated and sent me home with something to treat the nausea. Blamed it all on vaccine reaction. I couldn't eat, couldn't roll over in bed  and felt like I was dying. I should have gone back. They sent my home the first time I came in with actual Covid, too. I did go back the next day. Had to be wheeled in by wheel chair and I couldn't even stay seated upright. My blood work showed critical electrolyte imbalance and lots of other abnormals. I was admittied. 

At Mayo, they were able to review my blood work for my second episode and my hospitalization ... hence the diagnosis. That second episode did show mild abnormatlies in elevated  WBC and RBC and albumin, just  passed over because they were mild.  Hospital records were crystal clear. So with two occasions documented by lab criteria, plus records and notes I kept on all episodes, plus my array of symptoms led to a quick dx of classic Clarksons Disease.  I was told the albumin drop can come a little later into cascade. Not sure if that's true, but he seemed to know his business. But.. we shouldn't ever hesitate to go in. If its too early to show abnormalities at least there is a baseline for when we come back in another day or two.

Of course, the medications you were taking muddy the waters a bit, and as you say it could be a combo. But, my gut tells me there was a leak...especially since it was Covid. I have had Covid twice more since starting IVIG; I was lucky and sailed through it. Hit my husband harder than me. 

I had a similar predicament this week. I vacationed in Key West and developed a rash and what appeared to be insect  bites. I itched a bit the first week but it really intensified the second week disrupting my sleep and becoming unmanageable. In the second week, I notice a weight gain of about a pound a day for the last few days. It made me wonder if I was in early stages of a leak. I went to a walk in for the unbearable itching. I didn't even mention my SCLS because my suspicion was just a passing thought. I suspected bed bites, fleas, or mites picked up at hotel. She sent me home with a script for Premethrin cream to cover the insect infestation base and a 3 day course of Prednisone to quell the itching. After getting home and applying the insect killing lotion, I realized how swollen my belly and legs had become. I live in sweats so I just didn't realize. I had taken my rings off two days earlier so obviously my suspicion of SCLS was lurking.  I checked my after papers and saw my after visit summary showed my heart rate at 89 which is about 10-20 beats above normal for me. Still could just be stress from the allergic reaction.  I probably should have mentioned my SCLS and requested the blood work, if nothing else as a baseline. But, at the time, I was just too exhausted from no sleep and didn't have the energy to go there. In any case, after the first dose of prednisone, my weight dropped 4 pounds in 24 hours and the swelling went down. I usually get swelling first in my hands and face first, so this was different. I've read the leaks can be localized, so perhaps it hits my face first face with sinus related things and this hit my torso first because that's where the problem was???? 

I think we will have episodes of confusion like this ... never knowing for sure what is causing symptoms when we have other issues of concern. Which will often be the case since wide ranging things can trigger the episodes. Break through leaks are to be expected, but as long as we are getting our IVIG, they should remain mild and the cascade process abrupted. So, if we are lucky, we shouldn't progress so far to show those severe blood abnormalites. Hindsight for me, I think I was showing symptoms...even the intensified itching could have been from my swelling torso. I actually forgot that was a symptom. 

So, yes, my novice guess after dealing with SCLS for the last seven years, and having maybe 3-4 mild leaks not requiring treatment since my diagnosis and starting IVIG just over 3 years ago, is that you did have an SCLS leak. The passing out is pretty severe, but I did have episodes of dizziness and had to sit down during my earlier episodes, but not during any of my milder episode since starting treatment, I was starting to feel off and lethargic and a bit weak on Sunday when I dragged my self into the clinic, but I blamed it on my lack of sleep and a few drinks the night before.  Confusing disease!  So many questions, so few answers.  I apologize for being so long winded and bit disjointed. I'm on prednisone and still a little hyped up at 2:30am.  My itching is tamed, any bugs have been killed, and I'm hoping this is the end of it after the next two days of prednisone.

Glad you are feeling better! 

Cara,

Thanks for sharing your information. Confusing indeed.

How are things going now with the rash? Did you ever figure it out for sure?