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.

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

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.

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.

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

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!

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

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

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. 

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

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.  

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.  

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.

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 ) .. The brewery  of Duvel uses the same watersource as Pfizer.  
To everyone take care and stay healthy.

Hans

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.  

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

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

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

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

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/

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

48 hours I received my 2nd dose of the Moderna vaccine. Yesterday I was worse off than today. Mainly from the fatigue. Today I am back to my normal amount of energy, but I still have some aches. I’d say the side effects were the same from both doses (fatigue & aches), but this second dose was somewhat debilitating. Since my 2 scary situations with SCLS, I choose to take it extra easy if I’m feeling off/under the weather. If I need rest I take full advantage of it. In other words, I’m not saying I couldn’t function from the vaccine's side effects. For anyone getting the vaccine I’d suggest not making plans to do anything the next day, and to just rest. Side note: I had to cross state lines to get my vaccine; I went to a state that people with underlying conditions were given first prior (categorized me as 1A [in PA], as opposed to 1C [in MD]). Besides the 70 minute drive point-to-point each way, it hasn't been a bad experience. 

2 weeks ago I was fortunate enough to receive my first dose of Pfizer vaccine here in Ontario as our region is ahead of the provincial roll out.  I felt like dancing as I was so excited to get it as it felt like a huge burden was beginning to lift off my shoulders. Side effects were minimal- sore arm and migraine for a few days. I will receive my second dose in July.  Take care everyone. 

Dear everyone, I am så happy og reliaved to report that my husband now has gotten both his Covid Vaccines(Pfizer)he only had a few side effects (soreness and headache) 2-3 days after. I wish to thank the comminity for sharing, with my husband bering the only danish patient this really makes a big difference for us both dealing with SCLS. 
Best wishes for you all and a safe Easter. 
Kristine 

Hello everyone. Very happy to be vaccinated with Spulnik V. After the first dose I had a very difficult week. A lot of arm pain, muscle and joint pain. Also decay. After the second dose, I had no reaction of any kind. I want to leave a reflection, I hope you do not take it the wrong way but we must be aware that our complication is not the serious effects of Covid, but that it awakens a Leak, since the gamma globulin that we apply, most likely does not the necessary antibodies. To play with the numbers a bit. The contagion effectiveness of Spulnik V is very good, 92%. That means that I have an 8% chance of getting infected and waking up a leak that leads to a potential risk of life. A mitral heart valve replacement surgery has a 2% mortality rate. In short, let's not get careless, we still have a lot of risk. Much mask, little meeting. To continue taking care of yourself.

Ariel

Hello every one,
Yesterday I received my first vaccine (Pfizer). Until now I don't have any side effects at all (a minor stiffness at the place of injection). I was very lucky to have my vaccine already. My doctor put me on a list to receive a leftover in the hospital. Normally the first patients at risk will receive their invitation end next week. My doctor put me on the list while we preferred the Pfizer or Moderna vaccine while their effectiveness also against mild symptoms are the best. That is why I did not prefer to have AstraZeneca or Johnson&Johnson. So I received the Pfizer vaccine made in Puurs (Flanders, Belgium) The vaccination campaign does not progress very fast in Belgium  (we hope for an acceleration next weeks) and Europe. Millions of vaccines are made in Belgium but the majorty  of  these vaccines  are exported and on top of that some companies (AZ and Moderna) do not meet their contracts. We see that the approval procedures by Europe are too slow (compared with US and UK) and that the contracts are not tight enough.  We  hope now for the J&J vaccines (also made in Belgium, Flanders)  that will arrive next weeks (1 shot) approved 2 weeks ago.

Looking forward to my 2nd shot.  Best wishes to you all and stay safe and healthy.
Hans.

Had the first Modena dose today.  Already feel a little sore in the arm but otherwise fine.  I'll post more as things develop.

Hello everyone,

thank you so much for all the responses regarding the vaccine. I will be receiving the vaccine on May 6th! It is very comforting to have this forum for discussion of this syndrome. It can be very isolating at times.

Lisa

Hi All.

Just letting everyone know I had my first Covid vaccine (AstraZeneca) 2 weeks ago with no side effects.

Hope every one is going OK.

Warren

My husband had his 2nd Pfizer booster 1 month ago with no ill effects. Thank you everyone for your contributions to this invaluable community! Rebekah Sellers

Had my second Pfizer jab last week.  Felt rough for a few days but no real problems.

Hi,

after a struggle to get the permission for the vaccination here in Germany, I finally got the permission and also my first dose of Biontech/Pfizer. No side effects at all. The good thing is, that the permission includes two "contact persons", so my wife got the vaccination, too. As there is still a lack of vaccine in Germany we still have a priority list, do this is a big advantage for us.

Andreas

Hi all, I had my 2nd Astra Zeneca Vaccine last Thursday and on Saturday I morning I started an SCLS attack. I am very fortunate that I live close to a hospital and was able to go and have IVIG treatment 2g/kg over the Saturday and Sunday which stopped the attack. I came out of hospital on Monday and have been recovering well this week, just feeling tired. 

I hope you have a full recovery Caroline!

I had my first dose of Pfizer on Friday, 4/30. Had a sore arm the next day, with some fatigue and a touch of gastrointestinal discomfort, but feel fine today.

Hello every one
Last Friday April the 30th, I received my second Pfizer vaccine and I experienced almost no side effects. My wife also received an invitaion to have her first dose next Monday (May the 10th). Vaccinations are accelerating in Belgium and hope to all Belgians have access to the first dose half July.
I hope that all of you will stay healthy and if you did not yet receive your vaccine, that you will receive it as soon as possible. 

Hello,

happy to say I had my first dose of Pfizer vaccine today! Just a mildly sore arm but otherwise all good.

Lisa

Hello

i had a question about my IVIG and via email but I couldn't respond. Anyway hopefully Ann will see this. I received my IVIG week prior to vaccination but I did not coordinate the infusion with vaccination. Yes I receive 2ml/kg every four weeks over a two day period, which appears to be a standard dose. I will be maintained on that dose with no decrease. I do not receive any pre meds prior to infusion. I have receiving IVIG for three years. I will receive my second dose sometime this summer.

Lisa

My son has been on ivig for 10yrs now . He was told by a specialist at sick kids in Canada that the vaccine is probably something he wouldn't  benifit from (as well as flu shot) due to the ivig. So many different opinions and outlook on the topic .   Since he has been on the ivig he hasnt had as much as a sniffle let alone any cls issues . Although we aren't vaccinating "yet" i am very interested in following this thread 

Hello

Today the  newspapers in Belgium annouced that 2 persons passed away after receiving an Astra Zeneca vaccine. One of the persons was a SCLS patient. I don't have further details but I was suprised while the EMA (european medicines agency) warned beginning April about the risks for SCLS patients  being vaccinated with AZ. 

https://www.ema.europa.eu/en/news/meeting-highlights-pharmacovigilance-risk-assessment-committee-prac-6-9-april-2021A

This link was also shared by Arturo under the subject "Warning For Those Not On IVIG" .

I was just reading an article on bbc news & came across this:
 

Heart inflammation link to Pfizer and Moderna jabs https://www.bbc.co.uk/news/health-57781637

It says at the end of the article:

"However, the EMA has advised anyone with a history of capillary leak syndrome should not be given the Janssen vaccine. This is a rare but serious syndrome in which fluid leaks from blood vessels in the body."

Qnahmed,

Yes, a month ago the European Medicines Agency recommended against SCLS patients receiving the AstraZeneca vaccine, see https://rareshare.org/topics/2132, and now they advise against the Johnson & Johnson (Janssen) vaccine as follows:

EMA advises against use of COVID-19 Vaccine Janssen in people with history of capillary leak syndrome, July 9, 2021

EMA’s safety committee (PRAC) has recommended that people who have previously had capillary leak syndrome must not be vaccinated with COVID-19 Vaccine Janssen. The Committee also recommended that capillary leak syndrome should be added to the product information as a new side effect of the vaccine, together with a warning to raise awareness among healthcare professionals and patients of this risk.

The Committee reviewed 3 cases of capillary leak syndrome in people who had received COVID-19 Vaccine Janssen, which occurred within 2 days of vaccination. One of those affected had a history of capillary leak syndrome and two of them subsequently died. As of 21 June 2021, more than 18 million doses of COVID-19 Vaccine Janssen had been administered worldwide.

Capillary leak syndrome is a very rare, serious condition that causes fluid leakage from small blood vessels (capillaries), resulting in swelling mainly in the arms and legs, low blood pressure, thickening of the blood and low blood levels of albumin (an important blood protein).

Healthcare professionals should be aware of the signs and symptoms of capillary leak syndrome and of its risk of recurrence in people who have previously been diagnosed with the condition.

People who have been vaccinated with COVID-19 Vaccine Janssen should seek immediate medical assistance if they experience rapid swelling of the arms and legs or sudden weight gain in the days following vaccination. These symptoms are often associated with feeling faint (due to low blood pressure). 

PRAC will continue to monitor for cases of the condition and will take any further actions necessary. The Committee has also asked Janssen, the company marketing the vaccine, for further information about a possible mechanism for the development of capillary leak syndrome following vaccination.

As for all vaccines, EMA will continue to monitor the vaccine’s safety and effectiveness and provide the public with the latest information.

A similar review was recently finalised for another COVID-19 vaccine, Vaxzevria (previously COVID-19 Vaccine AstraZeneca).

Information for the public

• A very small number of cases of capillary leak syndrome have occurred in people who received COVID-19 Vaccine Janssen.
• You must not have this vaccine if you have previously experienced capillary leak syndrome.
• Capillary leak syndrome is a serious condition. The chance of the condition occurring is very low, but you should still be aware of the symptoms so that you can get prompt medical treatment to help recovery and avoid complications.
• You must seek medical attention immediately if you have the following symptoms in the days after vaccination, which may occur together with feeling faint (due to low blood pressure):
  • rapid swelling of the arms and legs
  • sudden weight gain
• Speak to your healthcare professional or contact your relevant national health authority if you have any questions about the rollout of the vaccine in your country.

Information for healthcare professionals

• EMA has reviewed cases of capillary leak syndrome in people who received COVID-19 Vaccine Janssen.
• Healthcare professionals must not give this vaccine to anyone who has a history of capillary leak syndrome.
• Capillary leak syndrome is a very rare, serious condition, which can be fatal if untreated. It causes fluid leakage from the capillaries, resulting in oedema mainly affecting the limbs, hypotension, haemoconcentration and hypoalbuminaemia.
• Healthcare professionals should be aware of the risk of recurrence of capillary leak syndrome in people who have previously experienced the condition.
• Healthcare professionals should be aware of the signs and symptoms of capillary leak syndrome. Patients with an acute episode of capillary leak syndrome following vaccination require prompt treatment and may require continuous specialist monitoring and intensive supportive therapy.
• Healthcare professionals should tell people receiving the vaccine that they must seek medical attention if they have the following symptoms in the days after vaccination, which may be associated with feeling faint (due to low blood pressure):
  • oedema in the extremities
  • sudden weight gain
• The product information will be updated to include a contraindication in people with a history of capillary leak syndrome. The condition will also be listed as a side effect with an unknown frequency.

See https://www.ema.europa.eu/en/news/ema-advises-against-use-covid-19-vaccine-janssen-people-history-capillary-leak-syndrome

There is no warning against the Pfizer or Moderna vaccines, but see https://rareshare.org/topics/2131