My husband has GPA and is awaiting third vCivid vaccine. His concern is that he had both initial Covid vaccines whilst undergoing cyclophosphamide treatment snd is terrified he has no immunity to Covid. We know he will be eligible for the vaccine but so far has been unsuccessful at booking an appt for one because it’s not been 6 months since his last vaccine. Does anyone know if he will have to wait the full 6 months or could he have the antibody test to identify if he has generated a response to those vaccines he has already had? If so, where do we order a test from, and what test are we asking for? If that antibody test shows low response to the vaccines, has he an argument for receiving his 3 rd dose now?
He is currently having an immunosuppressant holiday between finishing his chemo and starting oral immunosuppressants so in our heads this would be a great time to have the vaccine booster but we are hitting brick walls when making any attempts to get one. Can anyone enlighten us? Thank you
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harris1629
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Hello harris,As far as I understand it, we will be called up for our booster doses in the same order as the original vaccinations, when the time comes.
We shouldn't need to be proactive, and won't need to take the antibody test. One of my consultants said that this test is quite expensive anyway, when I enquired earlier on.
I have already been called in for mine. But sadly cannot have it as I am in the middle of a rutiximab infusion and my next is on January 6th so I have been advised to wait until end of January before getting the booster
If he was severely immunosuppressed when he received his first vaccines he should be eligible for a 3rd primary dose, not the more publicised booster programme. This is irrespective of his antibody status as revealed by blood tests. 3rd primary vaccine doses can be given 8 or more weeks after vaccine 2. Unfortunately the booking systems are not well clued up re this. It may be necessary for your husband’s consultant to set up arrangements for him to get a 3rd primary vaccine now. It is expected that a booster (jab 4) would follow 6 months later.
P.S. The third primary vaccines for the immunosuppressed were only approved a few weeks ago, albeit before the boosters. So it’s still taking time for the patient group to be identified. But often it has to be consultant driven. So I recommend that your husband contact his consultant ASAP to get this set up. He should not have to wait 6 months, and given the Cyclophosphamide should be getting a 3rd primary vaccine and then a jab 4 booster later, not a booster first.
Interesting! Thank you very much for this information. It’s a shame we have to be so proactive all of the time. We feel like we are sitting on a ticking bomb as I work in hospital where we often see Covid Positive patients, so terrified of bringing this home. Thanks again
This comment is correct as I also have GPA and I tried to get the 3rd vaccine but was told the booster would be ok. However I managed to get booked into my surgey's booster vaccination program and yesterday when i went to get it the nurse asked if i was immunocpmromised, to which I said yes. she then went on to say that I need to 3rd full vaccine and then the 4th booster 6 months later......try contacting your Dr's clinic to see if they are doing any vacinations ?
I know the antibody test isn’t needed but it was a relief to know that I was positive. I got it online through Lloyds pharmacy. It’s all done by post. You take your own blood through a pin prick. It was very quick and cost £50.
My mother is on MMF 250mg three times a day for Churg Strauss Vasculitis.
She’s had both doses of the Astra vaccine. I requested an antibody test through her gp some time after her 2nd vaccine. It came back negative. I’ve since been told that the antibody test offered by the nhs tests for previous infection and not whether the vaccine has offered any protection… i’ve asked for blood test to test for this - to see if immune response generated through vaccine to provide protection and i’ve been told no. Both by mum s GP and consultant at hospital.
I’ve read articles online suggesting, (my understanding), is that antibody tests dont test the t and b cells and other stuff to do with immune that vaccine would provide protection through…
My understanding is that generally most should wait 6 months’ from 2nd dose for the booster.
I’ve also asked the question whether mum should stop her MMF for a short time before and after the booster shot , to allow the vaccine to do it’s job without the immune suppressing from drugs. GP said as far as he’s aware no, there’s no guidance to suggest this.
Anyone told otherwise, it would be interesting to hear from you. All appears to be a grey area at the moment!
Yes, before my husband was diagnosed he had a multitude of seemingly odd symptoms and one of my theories was Long Covid so we both had an antibody test then. Like you said, this only tells you wether you have had Covid exposure within the last 6 months. Regarding to your Mother stopping her treatment around the time she has her next Covid vaccine, someone we know who takes methotrexate for RA said he was advise to not take it the week prior to vaccine and week following vaccine to get maximum effect. Like you say, ‘it’s all a grey area’. Thanks for your post.
I think we have to be careful comparing different treatments to our own treatment. Your consultant, as mentioned, is the one to discuss this with for reassurance as l would too, for whatever reason. Have you contacted Susan and John Mills? John is the founding member of the Vasculitis UK Charity and will do his utmost to put your mind at ease with sound advise as he also has GPA.
I've been in more or less same position as your mum, except I've had Pfizer vaccines. I've also been given similar information regarding tests etc. Now I'm just waiting to see what happens next. Before having the original vaccinations, I had asked about stopping my mycophenolate beforehand, and consultant said it wouldn't make any significant difference unless stopped for a long time, because it's in the system. So the answer was to carry on as normal. I'll just wait and see.
Thanks harris1629. Interesting that someone you know’s been told this. I will be asking mum s consultant at hospital re. stopping med before and after vaccine and see what he says and will post the answer.
Mum has been advised by her consultant at Hammersmith Hospital to continue as normal with her meds before and after the booster Covid vaccine. Obviously everyone should speak with their Dr first as might be different for them. Mum has Churg Strauss Vasculitis and is on 250mg MMF 3 x a day. Regards
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