Hello everybody!  Our community has been eerily quiet in recent months, so I'm starting this thread inviting those who have tested positive for Covid in the past few months to tell us whether or not the coronavirus provoked an episode of SCLS in you, and if it did, where you were in your IVIG infusion cycle (e.g., half-way through it or in the last days before the next infusion) and how you fared.

For samples of prior posts, check out https://rareshare.org/topics/2165 

Arturo

Hello SCLS members,
I started a leak in February 2022, 2-3 days before my monthly IVIG infusion. The day before the scheduled infusion, I experienced unusual fatigue and difficulty breathing on exertion. The lab confirmed hemoconcentration and I was admitted to the ICU. As I had an ENT "virosis" a Covid test was done and it was positive! The treatment consisted simply in giving me the IVIG infusion planned for the next day. I left the hospital 14 hours after admission. 

Arturo, great to hear from you!  All good on this end.  I came down with Omicron version at the end of January 2022 within a week after my Ivig infusion.  Had pretty normal flu like symptoms...low fever, headache, fatigue, chills, sweats etc.  Within 3-4 days, I was improving and had no SCLS symptoms.  I have had the original Pfizer shots and 1 booster in October of 2021.  So far so good.  I have not had the second booster at this time.  Just enjoyed my daughter's wedding in Charleston, SC on June 4th and I truly believe I am here today, due to my cousin finding papers written by Greipp and Druey and then the support from you during my second stint in the hospital.  Also exchanging information from all of you from this site, keeps me diligent in advocating for my health.  The doctors may want to try lowering the amount of IVIG at some point - Dr. Druey has discussed this with me as well.  I am a bit hesitant, but at this point I plan to listen to Dr. Druey and go from there.  Thanks for asking this question and leading this group.  Best of health to all of you!

Hello! I have chosen NOT to get the COVID shot. This was more than just a personal choice. The physicians I see and I (I am a nurse) came to decision that it was not a wise move for me to get it.  So far I have remained healthy and well. I receive ivig treatment every other week at the hospital. I have continued to live my life for the most part. My son was diagnosed with Covid in November 2020. I am not sure how he would have gotten it as he had not left the house since March of 2020. He was homeschooled and not around anyone. I truly believe it was a false positive. The 3 other people in the house never got sick,including me who was his main caregiver.  I am not a mask wearing person. 
 

shannon

chronic leaker dx 2010 

.My wife and very young children have managed to dodge the Covid bullet so far. I apologize for not sharing a story of catching Covid, since that is the subject of this thread. I hope to never get Covid, but I know that's not practical. When I do I'll revisit this thread and share my experience. For now I'll just keep wearing my mask and trust in the vaccines, boosters, and the IVIG.

Dear Community Members,

I hope you all are doing well. 

Late December, three days after infusions, I started to feel bad. I thought I was having a light SCLS episode. I went into hospital, my blood test seemed all right, but I tested positive for covid. I had received two doses of the vaccine (Pfizzer). I was sick (flu-like) for a week and I started to recover. 

Late January, I received the third Pfizzer dose.

Kind regards 

Hi all - hope you are all well.

I didn't exactly have SCLS triggered by covid, but I definitely feel the vaccines triggered symptoms for me and that there was some effect of covid that seemed like SCLS.

I had 2 doses of the Pfizer vaccines in January and February of 2021. I had chronic symptoms of SCLS from that time until October 2021. I told my doctors I had gained weight prior to getting the vaccines and asked them to raise my dose of IViG to match my weight. We conferred with Dr. Druey and he agreed. Once my dose was raised, the chronic SCLS symptoms resolved.

I caught covid around 1/5/22, less than 2 weeks after an IViG infusion. I got over most symptoms in a week, but the exhaustion, lethargy and brain fog lasted until February. Those symptoms felt similar to some of the symptoms I get during an SCLS flare - very heavy, weak, dull, brain-foggy (translate that slang as "stupid"), and lethargic. I can't say I know covid would have been different for me if I didn't have SCLS, but I do kind of feel like that's the case. So no, I did not have a real SCLS flare due to covid, but maybe SCLS influenced how I experienced covid.

Because I had such a miserable time after the vaccines, I don't want to get boosters. I've made significant changes to my life in order to avoid having to do that.

My best wishes for us all, and thanks -

Cathy

Hi everyone! I hope you're all doing great. 

Even though this thread is about our experiences contracting Covid, I just wanted to share that I haven't caught it nor received the vaccine. 

I will revisit this thread and share my experience if that happens, however, I really hope I never do, especially when I'm not receiving IVIG infusions because my doctors say that "it's just a patch". I know its controversial, but so far they are currently looking for other ways to treat my chronic leakage.

They also think that it's not safe for me to get the vaccine as it would worsen endothelial hyperpermeability and escalate to a more serious episode. 

Best of health to all of you,

Valeria.

Hello everyone,

around three weeks ago, I cought Covid 19. Probably Omikron BA.5. I got a running nose for two days and a cough some days longer. No fever or anything else. I continued to work in the Homeoffice. I am really happy that no SCLS episode was triggered.

I am vaccinated against Covid for three times, the first  booster was in October 2021. I wanted to get the second booster last week, but due to the infection I did not. The outbreak of my Covid infection was 5 days after I got IVIG. I guess this was a serendipity.

My wife and two children were also infected. It started with my daughter and wife. The were put in quarantine within our house, but three days later I got the symptoms.I guess the actual infection was before they isolated themselves. My son was symptom-free for a surprisingly long time, but in the end he got it, too. Everybody of us had very mild symptoms. We are all fully vaccinated.

At the moment I would say that it is almost impossible not to catch Corona. Unless you isolate you and your family in a way with unacceptable side effects.
 

Everything has a positive side: The timing was optimal. Directly after my IVIG, not directly before our planned vacation, at the end of our childrens school  year (so they missed almost nothing)

Good bye.

Andreas

Hello everyone, Friday the. 5. of August, my husband Cristiano and I unfortunately got a positive test result for Covid-19 (probably Omikron BA.5).  Same day he started preventive treatment with 200 mg.  Remdesivir, which continued Saturday and Sunday (100 mg. both days).  His symptoms were stomach ache, cough and fever.  Tuesday evening (the 9. of August) he had a small leak in both lower legs and was admitted to the ICU. Here he received 1 gr per kg.  Privigen during the night and the swelling slowly went down and he could return to our Home friday the 12. of August.  

Cristiano is in regular Privigen treatment every 4 weeks, during Covid he has received 2 gr/kg but since spring 22’, only 1 gr/kg. The attack came 1 week before the planned IVIG. Until now we have manage to avoid COVID but are very great full about the outcome and everything is now back to normal  

Best of wishes for all of you. Kristine (DK)

Kristine,

I'm so glad that your husband was given IVIG soon after he developed symptoms of a Covid-induced capillary leak!  His treatment and outcome conformed to the latest medical recommendation, see https://rareshare.org/topics/2192  Since I see that you got to meet Dr. Druey at NIH, I urge you to let him know what happened and to send him a copy of Cristiano's hospital (and, specifically, to include all laboratory) records.  And yes, viral infections are the leading trigger for episodes of SCLS, even when we are vaccinated against them, e.g., against Covid or influenza (flu).

Many thanks for the reply and for your suggestion. We will have Cristiano's data sent to Dr. Druey as soon as possible. Best wishes to you all. Kristine

I began to have COVID symptoms on Friday, Aug. 26th. I had just had my scheduled 55g infusion on Tuesday, Aug 23rd.  I had a small leak in my calves over Saturday and Sunday. I took an at-home COVID test which was negative, so I thought I had a sinus infection. The leak didn't progress beyond my calves, so I went about my business with a mask on. My symptoms were tired, stuffy, and coughing. Finally, on Thursday, September 1st  in the evening the leak began to move to my arms and I felt lightheaded (whether from the leak or the infection I do not know). My doctor admitted me into the hospital where I was given another 55g infusion. The leak reversed and I was discharged the following day. I was given another COVID test as part of the hospital admitting process and it was positive. I am now at home with no leaking but still dealing with Covid symptoms. The first time I contracted COVID was before there was a vaccination available. I am now vaccinated as well as boostered and still contracted COVID a second time. Both times COVID has caused a capillary leak.  You can read about my first COVID infection in a previous thread. My next infusion is this coming Tuesday, September 6th 55g. I have not missed an infusion and get 55g of Gamaguard every 2 weeks. 

I have been contemplating my situation recently. This is my third admittance to the hospital in the past year. Are the regular infusions doing anything? Are the infusions keeping me from getting sick more often?  Meaning, would every little cold or exposure to illness cause me to leak without the infusions?  If so, it would make sense to continue infusions bi-weekly. However, if the infusions are not stopping me from leaking especially when I contract COVID or other upper respiratory infections, does it make sense to infuse on an as-needed basis? I feel more comfortable suggesting this, now that my medical team knows exactly what to do when I am having a capillary leak.  I know every person with capillary leak syndrome is different, these are just questions that plague me when I am feeling discouraged. I hope all of you stay COVID and capillary leak free. 

Indeed it seems worrying that despite (recent) IVIG treatments that leaks still happen rather frequently. Of course COVID is a new fact since end 2019. Personally I still feel comfortable (also phychologically)  when I receive IVIG - 80gr every 3 weeks (1g/kg 3 week) . my dose is not at the highest level but the lowest. My hematologist also communicates me my IgG  as important parameter 15-16.5  before receiving new IVIG. I wonder whether this parameter is really important in preventing us from having episodes. 

I was diagnosed almost 3 years ago (September 10, 2019) as having SCLS and luckally did not have new episodes or catch COVID. I only was hospitalised with a high fever in June 2021 (see also my "About Me")  but there was no new episode. After that fever my IgG went down to 13 instead of the normal 15-16.5. Was this a proof that my IVIG has been working and protecting me?

Wish you all a good health.

I was just diagnosed with SCLS last week thanks to an attack triggered by Covid-19 (OCT 2022) that landed me in the hospital for 7 days. I'd had 5 previous episodes over 4 years of what I was calling my mystery inflammatory episodes which included symptoms heavy fatigue, muscle pain and weakness, elevated heart rate, inability to walk more than a few steps or stand longer than a minute, out of breath with slightest movements, swelling in face and limbs, weight gain, nausea. I had an episode after each of my Moderna vaccines. The first vaccine wasn't too bad. I was perfectly fine the first three days and then it started to hit. I was able to just sit and relax in a chair and as long as I didn't try to do anything, I was ok. The second one had me bedridden and because of nausea I couldn't even relax. and had a sense of something being very very wrong so I sought care at urgent care.  They noted my elevated heart rate, did an ecg, gave me nausea meds and sent me home. No blood work; they thought it was just an ordinary vaccine reaction. Interestingly, I did not have episodes after either of my subsequent Pfizer booster shots, including the bivalent. Yes, I was worried about getting the vaccines but with having these mystery attacks triggered by illnesses... I was more concerned that Covid-19 would kill me... and that my response to vaccine would be less than my response to the actual disease. 

Three weeks after my final Covid vaccine I contracted Covid while vacationing in Canada. Sore throat, some GI symptoms, and a fever hit me while driving from Montreal to Toronto where I picked up a home test and tested positive for Covid-19. We cut the vacation short and headed straight home to WI. Took us two more days of travel and by the time we got home on Saturday around noon I went straight to bed. My fever had already broken but I had those old familiar symptoms of complete exhaustion where even rolling over was a struggle. My face was already swelling. I felt horrible so went to the ER just hours after getting home.

WBC H      RBC H    HGB H.  HCT H  Abs Neutrophils H. Sodium L Albumin L

They did a chest X-ray and ECG, gave me an IV and sent me home. 

The next day I returned to the ER because...well, survival instinct. I felt awful. As bad, probably worse than the day before.  I was admitted and remained hospitalized for 1 week due to low sodium and many blood abnormalities. My Covid symptoms were mild. My fever never returned.  Mild sore throat. No cough or congestion.  I kept telling every I felt that my Covid symptoms were mild, but it was this other thing that happens to me. Extreme fatigue. Couldn't even feed myself. Couldn't shift my pillow or adjust my blanket.  Had trouble even sitting upright on a toilet. They kept giving me IV after IV because they thought they were treating for dehydration. I didn't have my SCLS dx yet. Instead my sodium kept dropping and I kept swelling. I gained 30 pounds that week. My entire body was swollen and tight.

Same abnormal blood as above but also CK H  Troponin H  Aldolase H  D Dimer H  Lactate Dehydrogenase  H  Ferritin H   Sodium L (down to 119)  Blood pressure 80s/50s   Pericarditis   Mild abnormal kidney labs

I was lucky to get into Mayo Clinic just two months after my hospitalization. The combo of High RBC,  Low Albumin, low blood pressure, history of episodic attacks, symptoms reported by me, similar blood data from one previous episode and a MGUS dx... the hematologist I saw felt very confident about dx of SCLS.  Of note, my MGUS was diagnosed as a result of my primary care doc running every test under the sun while investing my second mystery attack in 2019.

Just saw my local hematologist today. They are contacting insurance for approval of IVIG therapy and hopefully I will begin monthly treatments soon. That was long, but being new here I thought it deserved the background. Thanks for listening. Nice to meet you all. 

Cara