Hi All. I am sorry if I have missed any discussion on this topic but do we have any memebers who have been triple vaxed and subsequently been infected with Covid 19 and what was the outcome please.

Hi,

I am triple vaxed with the Pfizer vaccine. I got my booster a month ago  and last week Dec. 21st  I tested positive for Covid. My symptoms were much similiar to a mild head cold .I had blocked sinuses  but no fever,aches or pains! The symptoms lasted a couple of days and I am finally getting to the end of my ten day isolation period. Stay well . Ann

Many thanks Ann. I take it that you were not threatened by a leak? It was a shame you had to isolate over Christmas. I hope you enjoy your return to normal life after isolation.

Ann, if you are getting IVIG treatments (2g/kg?) every month, in which week did you come down with COVID?  Happy and HEALTHY New Year.

Thankfully, I wasn't threatened by a leak and I am certainly looking forward to the great escape Wazza !! Ann 

Yes I am on IVIG monthly  (1g/kg) .I tested positive for Covid twelve  days after my infusion.Here's wishing you all a safe and healthy New Year. Ann

I was triple-vaccinated (with Moderna) as of last week when the Covid-19 virus finally caught up with me even though I've been extremely careful, and although my symptoms were mild on Thursday, Friday and Saturday (12/23-25/2021) -- I thought I had come down with a bad cold, that's all -- during the course of that Christmas Day I started to feel differently. 

Therefore, I dusted off my HemoCue and noticed that, as the day progressed, my Hgb readings were steadily rising from the usual 15 range to 16 and heading toward 17 g/dL; it was increasingly harder to prick myself and draw a couple of drops of blood for the HemoCue analyzer; my blood-pressure readings were steadily falling while my pulse was speeding up; and my arms and especially my lower legs were getting progressively colder.  That combination rang alarm bells in my head, because in years past these have been tell-tale signs of an SCLS episode in progress.

I then tested the content of my nostrils with a Covid home tester, and I got a positive result.  (My wife had also been under the weather, but when she tested herself, she came out negative for Covid.)  To confirm this result, I retested myself, and again I tested positive for Covid.  The preliminary conclusion: I had Covid and the virus was likely provoking an episode of SCLS, as many of us rightly fear could happen -- and as in fact it has happened, sometimes with lethal consequences, to unvaccinated individuals who were or were not yet diagnosed with SCLS, and who for the most part were not receiving IVIG on a regular basis.  [For early warnings on this, see https://rareshare.org/topics/1993]

[The experience of a member of our community who was unvaccinated against Covid but on 1 g/kg of monthly IVIG in March 2021, when he caught the Covid infection and it triggered an episode of SCLS, is described in detail in https://www.europeanreview.org/wp/wp-content/uploads/5922-5927.pdf  His Hgb measurement upon admission at 3 AM was 17.3 g/dL and it rose dangerously to a peak of 21.7 by 11 PM that same day.  His albumin content dropped from 3.0 g/dL to 2.6.  He was administered 2 g/kg of IVIG and his Hgb went back down to a normal level of 15.3 two days later, and his albumin normalized afterwards, marking the conclusion of the leak phase of his episode of SCLS.]

At that point in the late afternoon of Christmas Day Saturday, I contacted my anchor physician, with whom we had an understanding that if I ever tested positive for Covid, and developed symptoms of a capillary leak episode, I would call him and he would get me admitted immediately to the (major New York City) university hospital with which he is affiliated, for expedited treatment first and foremost with extra IVIG. 

[Nearly two years prior, in late January 2020, a flu (Influenza A) viral infection had precipitated an episode of SCLS in me a few days before I was due to receive my regularly scheduled dose of IVIG, and it was with 2 g/kg extra IVIG that the episode had been successfully treated, see https://rareshare.org/topics/1967]

My doctor kept to the plan: I was tested for multiple viruses in the Emergency Room and was found to be positive only for Covid; my Hgb upon admission at 9 PM was 17.1 g/dL (and it would reach a modest maximum of 17.6); and by midnight I was already being treated with 1 g/kg of IVIG, followed by another 1 g/kg the next afternoon.  (In this instance, I had been due to receive my regularly scheduled dose of IVIG eight days later.) 

My other lab results confirmed a systemic capillary leak: e.g., whereas my albumin level was 3.7 g/dL upon admission, it subsequently dropped to a low of 2.5.  By Tuesday (12/28) afternoon, however, the leak phase of my episode was over, my Hgb reading was down to 14.2 g/dL, and I was discharged to isolation at home exactly 72 hours after admission. 

During my hospitalization, my wife also came to test positive for Covid, both by a rapid and a PCR test, so we are "lucky" to be isolating together with very mild Covid symptoms.  As far as we are concerned, the vaccinations are protecting us precisely as they should.

Since I believe that sooner or later we are all going to be infected by some strain or another of the Covid virus, my strong recommendation to all SCLS patients is that you too enter into a similar understanding with your anchor physician, namely: that if you catch Covid and also develop symptoms of an episode of SCLS, you too will be admitted to a hospital and be administered 2 g/kg of IVIG as rapidly as possible -- and regardless of when you are due for your next scheduled IVIG infusion cycle.

Hi Arturo. Thanks you so much for this information and I do wish you and your wife all the very best. I feel Covid is going to be a challenge for us all for some time.

Best wishes Warren (Wazza)

Félicitations pour un post particulièrement précis qui nous donne une feuille de route claire en cas de contagion COVID. Cet article sauvera des vies. Merci Arturo. Meilleurs voeux à vous tous pour 2022 et prenez soin de vous!
Claude

Goodmorning everyone
 And happy New Year
 I'm so sorry Arturo for having been infected with Covid-19 despite your attention.  As you know I had Covid-19 in March with a hard  episode of scls even when I got the modern vaccine had another episode of scls.  However, the important thing is that you and your wife still good .as when we heard on the phone to keep the O2 level under control
 In the end I wish everyone a happy new year, hoping that a better year for everyone

Hi all and Arturo, I'm too am very sorry to hear Arturo that you caught covid which triggered an attack but very glad that you recognise your early symptoms and was able to phone your physician to ensure a quick response in hospital with the administration of 2g/kg IVIG. I do wish that all SCLS patients had this arrangement as I too phone my physician when I have the symptoms of an attack to ensure I get IVIG quickly and feel this has definitely saved my life in numerous attacks. This arrangement was made following my second admission into ICU when I had not received IVIG quickly enough and was in a very critical condition and so now I feel that it is lifesaving. 
Wishing you Arturo and your wife a speedy recovery! Glad all is going well with you Ann too despite getting Covid.

Best wishes to all for 2022!

Caroline

Arturo,

Once again, your advice is most appreciated.  Very happy that your episode was treated quickly without any issues.  

Arturo,

I agree with rnuara and also thank you for sharing so much information as always.

Irishlady (Ann),

Thank you for sharing your experience with Covid. And that's awesome you didn't have a SCLS episode!

Dear Arturo, thank you for your detailed explanation. I'm glad you are doing well. As you say, this virus will reach all of us. But so far, vaccines and gamma globulin are helping us a lot.

Hello everyone, I wanted to tell you about my experience ... at the beginning of January 2021 I applied the first dose with Sputnik V, definitely there I had a leak that I resolved in 10 days at home, with a lot of fatigue, pain in the body and in the arm that he could hardly move. After a month I had the second vaccination without any symptoms. As Astra Zeneca had a lot of leakage problems and shares technology with Sputnik, I ordered the third MODERNA. With the application of Moderna I also had a slight leak, the period of pain and fatigue was longer (18 days) and I added pain in the knee joints that I experienced in my first doses of gamma globulin. On both leaks I took Prednisone. All doses were one week after the 2gr / kg gamma globulin was given. Conclusion, 2 different technologies had the same effect on me. I don't know how much it worked, but I took high doses of prednisone as recommended by Arturo in a post.

Thanks very much everyone. It seems that the risks will remain for quite some time but with careful planning, awareness of our individual situation and good treatment we can mimimise our risks.

Arturo... So glad that you are home recovering.... What a year you have had! Question for you about the HemoCue you said that you used. What exactly is it?  Would it be something that you'd recommend we have at home to track our Hgb readings? 

Thanks,

Lisa

Arturo, happy to hear that you are recovering and that you and your medical team have beaten the Covid infection. I think that is the positive news that  we SCLS patients can beat an infection. I am also interested in the HemoCue story- is it something that you can recommend? For the moment I only have a blood pressure monitor to se whether the prssure is not going too low. But a HemoCue maybe could give an indication of a SCLS attack coming. It looks not very cheap: about 600EUR (680 USD). On the other hand safety has no price.

Hans

For background information and discussions on the HemoCue portable hemoglobin analyzer, please see the following pages (in chronological order):

https://rareshare.org/topics/1131#381089

https://rareshare.org/topics/1760#492134

https://rareshare.org/topics/1923#114525

For explanations of how the HemoCue device works, see https://www.hemocue.us/hb-801/

https://www.hemocue.com/-/media/hemocue/corporate/pdf/gpm438int-170407-capillary-sampling-poster-a3.pdf

https://www.hemocue.us/wp-content/uploads/2020/07/HemoCue_Hb_801_System_Operating_Manual.pdf

The HemoCue device and the cuvettes it utilizes are manufactured in Sweden but are sold around the world, see https://www.hemocue.com/en/contact/world-contact

The device will last you for decades, but the cuvettes, which include chemical reagents, and which you will use one for each time that you test yourself, must be ordered new every couple of years because the chemicals expire.  I recommend you purchase a cannister with 50 cuvettes every other year.

You can find your nearest distributor on the Internet by searching for "Hemocue 801 analyzer" and for "cuvettes HemoCue 801," but in some countries they are restricted and are sold only to medical and educational addresses, in which case you would have to make arrangements with your physician (e.g., he/she orders it for you and you reimburse him/her for the cost, which is how I bought my first one -- an older model -- some 15 years ago).  

Examples of distributors in various countries are: https://cliawaived.com/new-hb-801-hemoglobin-analyzer.html

https://www.medischevakhandel.nl/en/hemocue-analyzer-mmol-l-hb801-125651931.html

https://www.medicalsearch.com.au/hemoglobin-testing-system-hemocue-hb-801/p/198376

https://rebio.mx/analizador-hb-801

Hello to all the members of this community,

I was diagnosed with SCLS in 2003. Since 2005 I have been receiving an immunoglobulin infusion (2g/kg) every 11th of every month.

On 09.02.2022, 2 days before the next immunoglobulin infusion, I felt a little tired after having a common cold without cough or fever, with a little less appetite. On 10.02.2022, I worked physically to remove the snow around our mountain house, at 1500 m of altitude, I had difficulty to blow at the effort but not at rest. Around 18:00, I felt orthostatic dizziness and abdominal discomfort, without nausea, without vomiting, without transit disorder. I went to the local doctor to have a hemoglobin (Hb) value. Result: 165g/l (I always have about 140g/l). I contacted my doctors (friends of mine) who know me well (head of the hospital pharmacy to ask for a quick delivery of 140 g of Privigen (i.e. 2g/kg) to the emergency room; head of the emergency department; head of the intensive care unit). When I arrived 15 minutes later, everything was ready and I had a blood test for the initial workup of a leak (Hb: 175). Since I had vague signs of rhinitis, the doctor suggested a PCR test for Covid19. Result: positive!

I immediately received the immunoglobulins in 2 phases: first 80 g (~>1 g/kg) from 19:00 to 20:00, then stop to see the Hb evolve without any hydric intake that could have distorted the result.  The Hb continued to rise until 185. Around midnight, the Hb started to drop to 16.5. I then received the rest of the immunoglobulins : 60 g (~<1 g/kg), total of the 2 phases: 2 g/kg. On 11.02.2022, at 06:00, Hg was 150. I went home at 10:00, a bit tired, but no other signs of capillary leakage.

Take home message : very mild symptoms, without general signs may be related to COVID19 which can trigger a capillary leakage. SCLS Patients, even if vaccinated 3 times, should be very careful and make first contact with doctors in resuscitation centers so as not to lose time if an emergency should occur. It's always when it's urgent that you can't reach by telephone the resuscitation doctors in the hospital emergency centers and you can't find the immunoglobulin you need. In JANUARY 2022, I had just written an email to my colleagues to get their private cell phone numbers and book the Privigen 24/24, 7/7. Everything went well very quickly, with only one blood test for the very targeted lab tests, no X-rays, no scans, no other tests, no time wasted thinking, all the medical and para-medical staff involved had complete confidence in my explanations and my proposals for management...

Even if one is not a physician, one should be interested in the decision-making process of emergency rooms because the professionals working there are probably not familiar with the SCLS and its leaks. But YOU know what to do and what not to do : pass this information on to the doctors who will save your life if you help them!

Beset regards. Claude Pfefferlé

Claude, I'm so happy for you -- and for the rest of us -- that your experience managing an episode of SCLS solely by being administered extra IVIG went so fantastically well!

I am glad that you followed the advice I gave earlier on this thread in late December, after I went through a similarly successful experience, but for the benefit of anyone who may have missed it, let me repeat it here and now in red:

"Since I believe that sooner or later we are all going to be infected by some strain or another of the Covid virus, my strong recommendation to all SCLS patients is that you too enter into a similar understanding with your anchor physician, namely: that if you catch Covid and also develop symptoms of an episode of SCLS, you too will be admitted to a hospital and be administered 2 g/kg of IVIG as rapidly as possible -- and regardless of when you are due for your next scheduled IVIG infusion cycle."

Hello everyone, thanks Claude for sharing so quickly.
I have doubts about the rate at which it was infused. He says it was 80Gr in 2 hours. Are those emergency speeds? Or your body always resists that speed without problems. I apply that amount in 6 hours. Is the increase in speed something critical in the emergency that I should alert the doctors?

Ariel.

Salut Arielbatt,

Les recommandations des entreprises offrant les médicaments doivent toujours être suivies à la lettre. Parfois, avec un peu d’expérience et en cas d’urgence, on peut adapter les recommandations avec souplesse et bon sens. J’utilise des immunoglobulines depuis 2005, sans avoir eu de problèmes particuliers avec les perfusions. Dans mon cas, je donne ma perfusion mensuelle de 140 g de Privigen (emballé +glucose 5% et 4000 ml) en 2 heures car au-delà de ce temps, une phlébite de la veine perforée commence. J’ai la chance d’être un sportif régulier avec un excellent système cardiovasculaire (sauf pour SCLS). Je pratique tous les jours le vélo ou le ski-alpinisme à un bon niveau. Lors de la réanimation, le temps presse et un taux de perfusion plus rapide que recommandé diminue le risque de choc hypovolémique mortel... le risque de réaction est donc relatif aux avantages. Le 10.02.2020, j’ai commencé la perfusion assez lentement. Après 15 minutes, le débit de perfusion a été augmenté au débit maximal de la ligne veineuse (cathéter court 18 G, débit 105 ml / min) sans aucun problème.

Sinceres salutations. Claude

Ariel, if IVIG happens to have the power to abort, shorten, or otherwise minimize an episode of SCLS, well, one would probably want to speed up the infusion process as much as possible.  This is not medical advice, which only your physician can give you, but a logical hypothesis.

My understanding is that the patients in our community all infuse at different speeds allowed by the manufacturer and approved by their physicians.  For example, the manufacturer of Privigen recommends starting out at a speed of 0.5 mg/kg/min (0.005 mL/kg/min) and then increasing the speed up to a maximum of 8 mg/kg/min (0.08 mL/kg/min), see http://cslbehring.vo.llnwd.net/o33/u/central/PI/US/Privigen/EN/Privigen-Prescribing-Information.pdf

In my case, I took the initiative years ago to gradually increase the speed of my infusions, with  my doctor's approval, because I needed to get back to work.  As a result, and for many years now, I have reached the maximum recommended speed, such that I infuse 90 g in less than 3 hours -- the actual time depends on how many bottles are involved (the more, the slower the process) and how available and prompt the nurses are (the slower they are in coming to change the bottles before air bubbles get into the line, the slower the whole process, of course).

Every time I would increase the infusion speed, I would get headaches in the days after, but they subsided with Tylenol, and within 3-4 months my body got used to the faster infusion speeds and I would have no more headaches.  Therefore, I would speed up the process again, which I did until I eventually reached the maximum speed allowed by the manufacturer.

If you are interested in speeding up your regularly scheduled infusion speed, and are willing to go through an adjustment process involving headaches or other unpleasant side effects, please consult your physician and have him/her prescribe the faster infusion target.  That way, should you ever have an episode of SCLS, you will be able to get the IVIG much faster than you do now, and benefit from that.

However, Claude probably holds the world's fastest IVIG infusion record, so you don't have to aim to beat him.  Cutting your infusion process in half the time -- from 6 to 3 hours -- may be a good enough and achievable objective!

I had 4 Covid vaccines. Two Moderna and two Pfizer boosters. I contracted Covid while on vacation in Canada about 3 weeks after my 4 vaccine. I had episodes after both Moderna vaccines (yet not the Pfizer) and my worst attack thus far triggered by Covid. It put me in the hospital for a week. My SCLS dx came two months after my Covid infection/ hospitalization. Just posted in detail under this thread... Covid-triggered episodes of SCLS?

I have had 5 vaccines, but I have contracted a strong variant this week. I have COVID pneumonia and am at Day 3 of my treatment with Paxlovid, Amoxicillin and Clavulanate.

I am in quarantine, have a severe sore throat, painful cough and infected lungs. I am very ill but I am hoping for relief soon.

I had a persistent flare of SLCS immediately prior to the COVID and was hospitalized. Thus far, the COVID pneumonia has only been accompanied by mild edema.

I have been very careful re masking, distance and avoiding gatherings, but I am presently in Florida, a low per capita vaccination state.

A lonely way to spend Christmas, I fear,

Susan Tedrick

When I had Covid I was given an extra dose of IVig but no other treatment. It was done out patient and helped a great deal.

Update: I spent Christmas Day in the emergency department with severe COVID and mild leaking/fluid shifts. Many tests were performed but no access to IVIG. This was because the hospital only carried Gamma GardN and I had experienced a reaction to that brand in December 2021.

My infusion center is closed for the Monday holiday. Happily, I haven't developed a significant flare.

Susan

Susan, so sorry to hear about your Covid infection and mild capillary leak right around Christmas!  I had a Covid-induced episode of SCLS around Christmas a year ago, after coming down with Covid shortly before I was due for my next infusion cycle, so I know the feeling of spending Christmas in the hospital.

With regard to your not receiving IVIG because the hospital only carried the Gammagard brand and you had experienced a reaction to that brand a year prior, such that you or they didn't want it infused in you, I do have a comment.

To my knowledge, all major brands of IVIG are produced to the same, strict specifications, such that patients are never allergic to any specific brand.  However, specific batches of any brand can lead to allergic reactions -- and this is true of all blood-derived products.  Therefore, just because once you had a reaction to a particular batch of Gammagard does NOT mean that you should avoid it thereafter.  Of course, don't take my word for it; you should discuss this with your physician and/or hematologist and/or immunologist.

In the past dozen years that I've been on an IVIG therapy for SCLS, during which I've been given four different brands of IVIG, only once did I (and other fellow non-SCLS patients who were getting IVIG for other conditions) have an allergic reaction to one batch of that one brand.  But I went on to have that same brand of IVIG infused without a problem before and after the bad batch.

Therefore, if I was having an episode of SCLS, I would gladly accept ANY brand rather than get none!  The IVIG you refuse is the one that could save your life.

As I'm recently diagnosed and have not yet had my first infusion, I have a question regarding how one chooses which brand? Are different brands more suited to individual patients or are they all the same and just manufactured from different companies?? Does a physician recommend a particular brand or is it more about availability and what insurance companies will cover?

The choice of an immunoglobulin brand depends mainly on the availability of the product and its price. Hospitals often cooperate to place group orders at the best price. In my case, since 2005, I used 5 different products depending on the availability at the moment. All the different products protected me against leaks. Some products caused me more headaches than others. I am currently on Privigen®. I agree with Arturo : an immunoglobulin infusion with any brand of manufacturer can save the life of a SCLS patient with an acute leak. A leak without treatment can kill any Patient with a diagnosis of SCLS. Take care and best wishes for 2023. Claude

Cara, expanding further on Claude's information, patients usually don't get to choose which brand of IVIG they're going to get, because hospitals and infusion clinics negotiate once a year or so the purchase of IVIG with various manufacturers depending on price and availability, and so you get whatever they decided to buy and happen to have in stock. 

It's of course the same with other medications: when you go for an operation, you don't get to choose which brand of anesthetic they are going to give you; in fact, they usually don't give you a choice of which kind of anesthetic they're going to use. 

And physicians usually don't prescribe the brand of IVIG because they don't want you to go without IVIG just because your hospital or infusion clinic does not stock that particular brand. 

Likewise with insurance companies: they usually reimburse each medication depending on its cost, e.g., they are willing to cover $XXX per liter of IVIG, such that hospitals and infusion clinics know to buy and stock IVIG that costs less than $XXX per liter -- or else they are going to lose money on each infusion of IVIG.

Thank you both for your responses and thorough explanations. Much appreciated.