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COVID vaccine in SCLS patients

L Message
9 Dec 2020, 10:56 PM

Hello everyone,

i was wondering if there are any known contraindications to receiving COVID vaccine. I am currently in Newfoundland Canada. I know they are advising that anyone with a history of allergic reactions not receive the vaccine. Has anyone discussed this with their physician? Curious to know how the experts feel about SCLS patients receiving vaccine.

Lisa.C.

krogers Message
14 Dec 2020, 05:35 PM

It's a good question.  Unless there is other information that becomes available my intention is to have the vaccine.

aporzeca Message
15 Dec 2020, 11:08 AM

I will gladly receive any of the Covid-19 vaccines as soon as I can.  The coronavirus poses a mortal danger to us SCLS patients.

qnahmed Message
15 Dec 2020, 08:31 PM

My husband who has capillary leak syndrome will be getting the vaccine tomorrow.  I agree with Arturo that any adverse reaction would be better than getting covid 19 and a very high likelihood of another episode of a leak.  My husband is an internist and started seeing patients with covid 19 since October so it will be a great relief to finally get this vaccine.  Take care everyone and please get the vaccine as soon as it's available to you.

rnuara Message
16 Dec 2020, 12:55 PM

As soon as I am eligible to receive the vaccine, I will be getting my innoculation.

DavidS Message
17 Dec 2020, 04:33 PM

My husband's hemotologist says there is not enough data to give us any evidence-based answer regarding the safety of the COVID vaccine for scls patients. 

He suggests we wait until there's enough data to understand the potential toxicity.

qnahmed, would you mind sharing with us if your husband has any adverse reaction?

And any one else who goes ahead with the shot?

I greatly appreciate this forum, and so does our hemotologist!

KristineZuccarello Message
17 Dec 2020, 09:13 PM

Hello everyone, Thank you for sharing. My husbands doctor Professor Trine Mogensen https://www.google.dk/amp/s/www.researchgate.net/profile/Trine_Mogensen/amp 

has contacted Dr. Kirk Druey https://www.niaid.nih.gov/research/kirk-m-druey-md-0. They both recomment my husband to get the vaccine as soon as possible. Best (safe) wishes for 2021 to you all. Kristine from Denmark

KristineZuccarello Message
17 Dec 2020, 09:13 PM

Hello everyone, Thank you for sharing. My husbands doctor Professor Trine Mogensen https://www.google.dk/amp/s/www.researchgate.net/profile/Trine_Mogensen/amp 

has contacted Dr. Kirk Druey https://www.niaid.nih.gov/research/kirk-m-druey-md-0. They both recomment my husband to get the vaccine as soon as possible. Best (safe) wishes for 2021 to you all. Kristine from Denmark

krogers Message
18 Dec 2020, 06:11 PM

The real question is whether the vaccine stops the spread (transmission) of the virus and does it stop the virus triggering a leak which is the additional important risk we have a SLCS patients.There are some intreging similaries between aspects Covid 19 diease and SLCS.  Some recent publications show that Covid 19 shows a capilllary leak in the lung tissue which is what happens in systemically in our condition.  I feel we are incredibly vulnerable to this virus.

Kevin

My son has just tested positive and we are completely isolating and continually steralising surfaces.  Here in UK the spread of the virus is a disaster. 

claude53 Message
19 Dec 2020, 09:23 AM

Hi everyone,
The pathophysiological mechanisms of COVID19 are beginning to be known and while they differ from the mechanisms of SCLS, similarities are observed at the vascular level, as with many other diseases with vascular expression (e.g. septic shock).
The current problem is that we do not know what triggers acute SCLS. A viral infection of the ENT sphere is one of the hypotheses retained by scientists.In our case, COVID19 could be complicated by an acute systemic leakage in addition to the pulmonary vascular damage (commonly associated with COVID19).
I think that SCLS Patients should be vaccinated against COVID19. If despite the vaccine a SCLS Patient should be tested COVID19 positive, an IVIG infusion should be considered at the slightest sign of leakage.

For more information : COVID-19: the vasculature unleashed | Nature Reviews Immunology

Claude Pfefferlé, Switzerland

krogers Message
19 Dec 2020, 04:44 PM

Good advise Claude.  We must  ncredibly vigilant.  A dose of steroids would also be another possibility as a precaution.

Unfortunately we are in the area that the new more transmissible variant of the virus has developed.  

qnahmed Message
2 Jan 2021, 03:22 PM

Qamer received the first dose of the covid-19 vaccine 12 days ago and so far has not experienced any side affects.  Horray!!!  I hope everyone here will get access to the vaccine very soon.  Take care & I wish everyone a happy new year.  

aporzeca Message
14 Jan 2021, 10:46 PM

I'm pleased to report that some 30 hours ago I received the first dose of the Moderna coronavirus vaccine, and I experienced no adverse consequences of any kind.

I hope that all of you have access to one or another vaccine soon.  If your government's priority distribution list includes a category that puts ahead those at increased risk of a severe case of Covid-19 illness due to a medical precondition, know that you should qualify for that priority category.

You can ask your physician to sign a letter for you to take to the vaccination site attesting that you suffer from a rare illness, Systemic Capillary Leak Syndrome, which pre-conditions you to have a life-threatening and possibly fatal outcome should you be exposed to the Covid-19 virus.

Incidentally, to reduce the risk of a rare allergic reaction, especially to the second dose of the Covid-19 vaccines, ask your physician whether you may take a small dose of an antihistamine, like a 25mg pill of Benadryl (diphenhydramine), a half hour before your vaccination appointment.

HansDeWit Message
15 Jan 2021, 01:23 PM

Hello Arthuro,
That is good news! Personally I guess I will receive a vaccine in the month of March. Altough the Pfizer vaccine is made at only 15 kilometers from where I live, the vaccination really started only last week in Belgium. First groups are people who live and work in retirement homes, then personel of hospitals, then physicians and normally in March the people over 65 years and the people that have a health risk. I hope (and think) that I will be in the last category.  In the first period Belgium was not doing very well but now we are one of the best countries in Europe coping Corona. But everyone is afraid of the new English and South-African mutations, that have the name to be more contagious.So for the moment we have to wait a while and enjoy  a Duvel, a famous Belgian strong blond beer (much better than Mexican "Corona Extra" beer smiley) .. The brewery  of Duvel uses the same watersource as Pfizer.  
To everyone take care and stay healthy.

Hans

qnahmed Message
16 Jan 2021, 05:09 AM

Arturo, I am so glad to hear you were able to get the vaccine.  Qamer has just received the 2nd dose of the vaccine on Tuesday & so far he has not had any adverse reactions & is doing well.  

Lolaudesi Message
16 Jan 2021, 04:09 PM

Hello!  I hope the vaccination reaches all countries quickly!  I am happy for those who have already been vaccinated, we in Argentina made a consultation with a well-known infectologist, she told her about the leak syndrome and she told us that without a doubt we must be vaccinated and with any available vaccine.  In Argentina at the moment we only have Sputnik V

madrust Message
6 Feb 2021, 07:25 PM

I have received both doses of the Moderna vaccine. No side effects after the first shot and the normal side effects after the second shot. About 24 hours after the second shot I was extremely tired, nauseous, headache and chills. After work, I went home and went to bed. I felt normal the next day and went to have my infusion. I didn't feel any different after my infusion, but the minor side effects that I do get from my infusion are lingering. It's been over a week and I still feel mildly ill and tired. Otherwise, I am still going to work. The side effects I experienced are also the same side effects my coworkers did. I hope this helps.

Maria

aporzeca Message
7 Feb 2021, 04:49 AM

Maria,

Many thanks for this information.  I just figured out that you originally joined this community more than a decade ago under the username "mamorris1970," which you kept until at least 2016.

Arturo

krogers Message
7 Feb 2021, 02:34 PM

Hi All,

Got the first dose of Pfizer vaccine last week.  No significant side effects.  Interestingly my doctors wanted a 2 week gap between the vaccine administration and IVIG.

Kevin

aporzeca Message
14 Feb 2021, 01:55 AM

I'm pleased to report that some 60 hours ago I received the second dose of the Moderna coronavirus vaccine, and I experienced no adverse consequences of any kind.  My wife, who is in otherwise very good health, had a strong case of the chills, a low fever, and generalized weakness starting some 12 hours after receiving her 2nd dose, and for about 24 hours after that.  These are relatively common side effects, see https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/Moderna.html

As per my physician's recommendation, and to reduce the risk of a rare, immediate allergic reaction, I took a small dose of an antihistamine (a 25mg pill of Benadryl, or diphenhydramine), a half hour before my vaccination appointment.

I hope that you all manage to stay healthy until you get vaccinated. The newer strains of Covid-19 are far more contagious than the original, so I urge everyone to avoid drinking or eating with others indoors, and not to take off your masks when meeting with anyone else indoors or outdoors.  In fact, here in the USA, the experts at the Centers for Disease Control (CDC) are now recommending that we also start using two (different) masks on top of each other, see https://www.cbsnews.com/news/double-face-mask-covid-19-cdc/

catsanmice Message
20 Feb 2021, 04:57 PM

I 've gotten 2 doses of the Pfizer vaccine. I worked & didn't get enough rest after the first dose, so ended up achey and stiff for a day or two. By the 4th day after, I was exhausted, cancelled my clients and slept all day. Continued being low energy all 4 weeks until the 2cnd dose, but I can't tell if the vaccine or stress or depression or ?? caused it.  It's been a tough year (right? You know :) )
No reaction after the second dose, but I was smarter about it. I took time off, drank lots of fluids, did a lot of exercises to pump the arm muscle that received the shot, and walked around to help my body move the lymphatic fluids and process out the shot. I think that all helped.
be well
God bless
Cathy