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Covid-triggered episodes of SCLS?

aporzeca Message
19 Jun 2022, 10:02 PM

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

claude53 Message
20 Jun 2022, 06:02 AM

 

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. 

 

Barney Message
20 Jun 2022, 11:06 AM

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!

Shannoncourt Message
21 Jun 2022, 12:58 AM

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 

DudeSCLS Message
21 Jun 2022, 10:28 AM

.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.

amj Message
28 Jun 2022, 02:21 PM

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 

catsanmice Message
2 Jul 2022, 04:43 PM

catsanmice Message
2 Jul 2022, 04:56 PM

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

 

ValeriaSpain Message
5 Jul 2022, 01:52 PM

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.

AndreasGunsser Message
26 Jul 2022, 11:32 AM

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