Hello everyone. My 17 year old daughter has scls. Her school is mandating for all students to get vaccinated, I am nervous about her getting the vaccine because I don't know what the side effects are for people with scls. Have any of you had the vaccine or does anyone know what is recommend for people with scls?
thank you all in advance.
Hi Jasperdina. On the advice of Dr Druey and after having the full recommended monthly treatment of IVIG (2gm/Kg body weight) I have received two vaccinations. The first was Astrazeneca and the second Pfizer . The change of vaccine was driven by the European recommendation that Astrazenca not be given to CLS sufferers. I did not have a negative reaction to either of the vaccines and I certainly feel a lot safer given that our condition is likely to be triggered by viral infection. I hope this helps.
Jasperdina,
Several prior discussion fora have been dedicated to Covid and to Covid vaccines, so instead of starting a new thread and expecting many useful answers, it is better to inform yourself by reading the earlier discussions, mainly https://rareshare.org/topics/2091 and https://rareshare.org/topics/2140
To summarize the medical advice, your daughter should get vaccinated with the Pfizer or Moderna vaccines, and NOT with the Johnson & Johnson or AstraZeneca vaccines, and she should receive 2 gr/kg of intravenous immunoglobulin a few days before the vaccination.
Arturo
Hi
I get the vaccine last Friday I get moderna I had a fever 37,7/38,4 and a hard pin at all my body today I feel better a little bit of headache I hope that every thing will be ok
i decided to get it after I had the confirmation from dr. Durey last week
hoping the best for all of you
yaser
Hi everybody here I am again last night I have a heard attack of scls and I called 911 and they take me to the hospital and the start the ivig 2gr/kg Everything now is ok I think is the start was a vaccine I hope that everything well be okay
yaser
Hello, I hope you are well today, at a distance, I think I had a leak the first dose. It makes sense since it was with Spulnik, which has the same technology as Astra zeneka ... but modern is very different. Could you give more details? are you still hospitalized? how long did it take to reverse the leak? How long did it take from your last gamma globulin to the vaccine dose? Thanks for sharing.
Hi
now I am ok I came back home I still in hospital for 4 days the leak was stopped after I have the first 30 grams of ivig after that my blood test was ok
i had got my last infusion of ivig at 4/5 agosto the vaccine was 13/08
The different thing between me and other who got the vaccine that I had Covid-19 at 13/03/2021 which I had an anther scls attack also it was very hard I think this information is important to know
I don't know if I didn't have COVID-19 and I get the vaccine it's going different who know that
finaly I hope that God bless all of us
yaser
rome Italy
Hi
now I am ok I came back home I still in hospital for 4 days the leak was stopped after I have the first 30 grams of ivig after that my blood test was ok
i had got my last infusion of ivig at 4/5 agosto the vaccine was 13/08
The different thing between me and other who got the vaccine that I had Covid-19 at 13/03/2021 which I had an anther scls attack also it was very hard I think this information is important to know
I don't know if I didn't have COVID-19 and I get the vaccine it's going different who know that
finaly I hope that God bless all of us
yaser
rome Italy
Hello all,
As we know, treatment of IVIG can prevent the CLS, even inject Covid vaccines. I always see the suggestion is 2g/kg of treatment of IVIG. I would like to know that is there any case is about the treatment of IVIG is 0.5g/kg and also success to inject Covid vaccines?
(I will start the treatment of IVIG in October, but my treatment of IVIG may 0.5g/kg .)
Best regards,
WangTai
What's the procedure to get the booster covid vaccine ? My husband is under the impression that it's not available right now but it looks like some of you got it already. We are in indiana. Thanks!
nayab
I just realized that the immuno compromised are just getting an additional shot of the vaccine and not necessarily a booster shot. Is my understanding correct?
nayab
My physician has initiated an order for the 3rd dose of Moderna.
Susan
Nayab,
The booster shots now available in the United States to the immunocompromised, and in the weeks and months to come to the general population, indeed consist of a third shot of the same vaccine, namely, booster shot = 2nd shot = 1st shot. The recommendation is that booster recipients stick to the same brand as before (e.g., Pfizer or Moderna).
Your husband can get a booster shot right now in Indiana, and a physician's prescription is not necessary. He should take his CDC vaccination certificate with him, so they may see which vaccine he got and when, and so they may add the third shot to his record, and if asked whether he is immunocompromised, he may answer " Yes." For additional details, see https://www.coronavirus.in.gov/vaccine/
There is additional guidance on Covid booster vaccination for SCLS patients in an earlier forum, see https://rareshare.org/topics/2152
Wangtai,
IVIG is a very expensive blood-derived product, so in many countries it is rationed, directly or indirectly, especially by government-run healthcare systems, such that SCLS (and sometimes other) patients are either denied the medication or else they are given lower-than-recommended doses.
We do have patients in this community who receive more or less than 2 g/kg every 4 weeks or every month. Some patients receive 1 g/kg and a few patients as little as 0.5 g/kg. However, when patients receiving lower doses keep having -- but surviving -- episodes of SCLS, they are oftentimes authorized to receive higher doses (e.g., 1 g/kg instead of 0.5, or 1.5 g/kg instead of 1.0, or 2 g/kg instead of 1.5, or even 2.5 g/kg instead of 2.0) because episodes of SCLS can be fatal. The more episodes one has, the greater the chances of a fatal episode, because each episode has the potential to damage vital organs like the kidneys, heart, and brain.
Dear aporzeca,
Thank you for your kindly reply.
Actually, i was diagnose CLS after inject the first Covid vaccines ( Without any prevention). I am afraid about i will trigger CLS when i inject the second Covid vaccines (0.5g/kg IVIG treatment).
Best regards,
wangtai
Wangtai,
I suggest that you insist with your physician that you be given a full dose of 2 g/kg of IVIG a few days before your 2nd dose of the Covid vaccine, which should preferably be the Pfizer or Moderna vaccines, and not just a mere 0.5 g/kg which would provide minimal protection.
Please make your physician aware of the following two publications, which are relevant to your situation, and are discussed in https://rareshare.org/topics/2140
They are:
https://www.acpjournals.org/doi/10.7326/L21-0250
https://www.healio.com/news/primary-care/20210714/qa-covid19-vaccination-may-trigger-systemic-capillary-leak-syndrome-flares
Dear aporzeca,
Thank you for your kindly reply.
Best regards,
wangtai