Belimumab and Pfizer Vaccine

[Paprika60]

I would like to know if there is any protocol on Belimumab and Covid vaccine.

I have been offered a Belimumab therapy only a few weeks after Pfizer Vaccine and am feeling apprehensive about this. I have had my first vaccine with bad reaction especially to tongue and ulcer (Sjogren) and second vaccine is soon...but Belimumab is to be scheduled soon after that. I would be grateful for any information. Anybody out there with Lupus and Sjogren on Belimumab?

[ijeasike]

I have lupus and I have been on Bulimumab for more that 3years now. I was just advised to have at least 7 days break before or after having the vaccine. Then I can have the bulimumab. I have had my first vaccine and luckily I had no reaction. The treatment has really helped in managing my Lupus symptoms.

[Paprika60 in reply to ijeasike]

Thank you very much for your reply. Very good to hear that you are doing well with Belimumab. Are you on any other medication?

[ijeasike in reply to Paprika60]

Yeah, am of quite a few medications. Hydroxy chloroquine, gabapentin, amytriptylin, zomorph, neifedepine, lanzoprazole, sildenfil, ferrous sulphate, solifencin, asprine and paracetamol. Then I have flolan infusion quarterly for raynauds.

[Paprika60 in reply to ijeasike]

Thank you very much for your detailed response. Hope you are coping well with all these medications.

[Paul_Howard Partner LUPUS UK]

Hi Paprika60 ,

There was a fairly recent update to the JCVI Green Book which recommends that anyone who is due to start on a new immunosuppressive therapy should be prioritised to complete both doses of their vaccine beforehand. You should speak to your consultant so that they can arrange your second dose to be sooner than the usual 12 week interval.

[Maureenpearl in reply to Paul_Howard]

My Rheumatologist wrote to my GP and send me a copy of the letter to advise them that I should be vaccinated ASAP and given the second dose three weeks after the first so I would have at least four months before I have the Rituximab infusion.

[Paprika60 in reply to Maureenpearl]

Thank you very much for letting me know. 4 months waiting sounds more reasonable. I was told that Belimumab is gentler but even so 2 weeks after Pfizer seems too risky. Hope you get your vaccine soon. If you are getting Pfizer, please make sure you don't have alcohol for 3 days beforehand. I didn't know this and this may have contributed to my reaction being much worse.

[Maureenpearl in reply to Paprika60]

Hi Paprika60

I had the AstraZeneca vaccine on the 3/2 and will have the second one this Wednesday.

I had a headache and I took a Paracetamol for it. I also felt a little warm on my left side. It was really the fatigue that get to me, I was so tired and would just fall asleep constantly for a week.

I’m praying I will be okay this Wednesday when I have my second dose.

Hope you can have your dates change.

Take care

God bless

[Paprika60 in reply to Maureenpearl]

Thank you very much for your good wish. All best wishes to you and good luck to your second dose.

[basketcase54 in reply to Maureenpearl]

I had mine on saturday I'm so so tired but been lucky haven't had any other side effects but yesterday and today I can't keep of the toilet not sure if its relate or not x

[Paprika60 in reply to Maureenpearl]

Hello Maureen Pearl, How are you getting on with your second dose? Are you having the same effect? I am getting the second dosage of Pfizer tomorrow and am going to try to be very positive about it without the dread...an experiment on mind over matter! : )

[Maureenpearl in reply to Paprika60]

Hi Paprika, I just had a headache and feeling cold then hot, plus feeling a little light headed.

I was very apprehensive about the side effects from the second dose of Astrazeneca because so many people were saying it will be worst than the first but it was no worst than the first dose.

Hope it has gone well for you.

[Paprika60 in reply to Maureenpearl]

Thanks for letting me know. I got my second Pfizer yesterday and second one seems much better. I did take some precaution such as drinking plenty of water (eating extra salty food!) and taking paracetamol within an hour of jab. Take care!

[Paprika60 in reply to Paul_Howard]

Thank you very much, Paul. The second vaccine is being scheduled soon but my doctor told me he wanted to arrange Belimumab two weeks after my second dosage and I was a bit shocked and got worried. Vaccine is to boost my immune system against Covid but Belimumab will dampen so much of B cells...so it doesn't seem to make any sense. I am still worried and am getting stressed about it especially because I can never have Rituximab due to having reacted so badly. Even Pfizer made me very ill for three weeks.

[Paul_Howard Partner LUPUS UK in reply to Paprika60]

Hi Paprika60 . Most of the protection comes from the first dose of the vaccine. This is what the current guidance says:

"The small number of patients who are about to receive planned immunosuppressive therapy should be considered for vaccination prior to commencing therapy (ideally at least two weeks before), when their immune system is better able to make a response. Where possible, it would also be preferable for the 2-dose schedule to be completed prior to commencing immunosuppression. This would entail offering the second dose at the recommended minimum for that vaccine (three or four weeks from the first dose) to provide maximum benefit that may not be received if the second dose was given during the period of immunosuppression."

Therefore, it looks as though your consultant is following the available guidance.

[Paprika60 in reply to Paul_Howard]

That's a relief and thank you very much for the extra info. It seems some doctors are more cautious and others not. Ultimately we have to experience enough. All these are new to all of us including doctors. So fingers crossed!