Article in today's Telegraph re Covid vaccines do not work on the immunosuppressed

[amms43]

In an article from today's Telegraph, Lady Nicola Mendelsohn, who suffers from a blood cancer, has discovered that despite her full vaccination for Covid-19, she has no antibodies due to immunosuppressive treatment and is advised that she will have to continue to shield. The article assumes this is the case for all immunosuppressed people. Do we know if this is in fact the case for Vasculitis patients? I have received both my vaccinations and am due for a further rituximab treatment in three weeks. This was not suggested to me and I have not been tested for antibodies.

[Nadine99]

From the Vasculitis FB page, I can see that some people have been tested for antibodies and found positive.

[vivdunstan Volunteer]

It's not true for all patients. If in doubt consult your medics about your case.

Vaccine effectiveness on immunosuppressed people is still being studied. However a recent large study in the US on solid organ transplant patients - many of whom are on the same immunosuppressive drugs as lots of us, including Mycophenolate - showed only 17% showed measurable antibodies after vaccine 1, and only 54% after vaccine 2.

I paid for a private antibody test recently after my second AstraZeneca vaccine and got a positive result. I tested 3 weeks after vaccine 2.

A negative result does not mean we have no protection. Only a medic could advise an individual patient to continue to shield. Antibodies that show up in tests are only part of the body's protective response. The NHS is not routinely checking for antibodies. The science is unclear.

I know that Vasculitis UK among others is supporting research into vaccine effectiveness for immunosuppressed people. More results will come out in due course.

[amms43 in reply to vivdunstan]

Thank you very much. I am sure you are correct and I should ask the medics. From what I have found, they may not yet have sufficient knowledge about this.

[PinkyBear1963 in reply to vivdunstan]

Just to say I'm on mycophenaolate and 20mg steroid s I paid for a test for my self and son who is on lower dose s. They both came back positive for antibodies mine was 18.7Ulm and my sons was 224.80Ulm (0.8-2500+ is positive.

The astra zenaca jabs both made me really ill for 3wks at a time, whereas my son had a mild 1 day reaction.

Just thought I d share

[vivdunstan Volunteer in reply to PinkyBear1963]

It sounds as though you and me came back with similar levels of antibodies. Assuming the scale is the same of course with different companies. My result was 16.4 U/mL. I'm on 2g Mycophenolate Mofetil and 7mg steroids. Those will probably be my dose levels for life now, unless I get another relapse. Thanks for sharing.

[Kenw28]

I have taken a private test using Medichecks. Test done on the 24th May. I have had 2 Pfizer jabs, 2nd 28th April.

I have MPA vasculitus,

Currently on 2g mycophenolate and at the time of the jab 2mg prednisolone (just dropped to 1mg). Plus other pills for blood pressure, heart rate and cholesterol.

Tests came back negative. No antibodies.

[amms43 in reply to Kenw28]

Thank you for that. I am not dissimilar, mpa, 2.5, pred. Annual rtx. I might get test as you did and again 4 wks after infusion. Might produce interesting information ,

[Mooka]

I asked my consultant this yesterday and she said that although plenty of trials are taking place no one knows the answer yet. I have immunoglobulin replacement therapy and she did mention that I may get some benefit from this if it contains antibodies. I believe the answers are due later in the year. Her advice was go about your normal business whilst levels are low.

[amms43 in reply to Mooka]

Thank you. That sounds like a sensible plan. I like doctors who admit when there isn’t an answer.

[AndrewT]

Dear amms43,

I have 'Raised' this very Issue, with my Consultant.... his view? 'Have Both Vaccinations, when they are Offered. Individual Immunity Will be Different- for every Patient. A 'Booster' dose might be needed...but that Hasn't been Finalised Yet'.

I recall, a few years back now, that a Seasonal 'Flu' Vaccine's efficacy was questioned... My Doctors View...was to Have It, as it would offer 'Some Immunity'.

So maybe we won't get 'Full' COVID Immunity.... However we will, generally speaking, get- at least- Some..... Surely a good idea. I've HAVE had Both Vaccines myself.

AndrewT

[Paprika60]

I have had two Pfizer vaccines in Feb. for antibody study conducted by the Imperial College.Although I had horrible and painful reactions that lasted for three months (!!), my doctor tells me that I have healthy amount of antibody. So it seems to be all different for each individual.

[Sparkypatrick]

The antibody test will not show things like t-cell production, which are part of vaccine conferred immunity. That's still being researched, but you may still have some immunity, even without antibodies.

[AngharadJ5]

I was going to mention the same study that vivdunstan mentioned. They’ve experimented a third dose of vaccine to people in that study and they showed antibodies after that so it might very much be needed.

I had my Pfizer vaccine in jan and Feb when I was on prednisolone and mycophenolate and had my second vaccine about two weeks before starting tocilizumab.

I paid for an antibody test which I did last week and it’s come back telling me I have antibodies.

It seems to vary between us all even if we are on the same medications. I wonder if me being younger has helped with it.

[Grannybean]

I have GPA and am on prednisolone (2mg) and azathiorprine (50mg). After my first vaccine I had antibodies, but not as many as "normal" people (according to my consultant). After the second vaccine I have tested positive for antibodies ("detected"), but the associated figure of 60 BAUPERML means nothing to me and I've had no response to an e-mailed query to the hospital.

[Chipper03]

Interesting discussion here. I have EGPA, on azathioprine and prednisolone. I’ve had both jabs, Astra Zeneca. I’ve asked both my GP and consultant if I can please have antibodies test and both said no it’s not worth doing as individuals respond so differently. Consultant also said the area I work I’d be very unlucky to catch Covid. I work in a number of schools so feel quite concerned, am wondering now about buying the private test, or maybe asking for it through Occupational Health. Some online reviews of private test companies are very negative, that’s adding to my uncertainty. Bit of a dilemma!

[amms43 in reply to Chipper03]

The replies to my original post have been very interesting. I don’t quite see how there will be an answer to where we stand on this if antibody tests are not routinely taken on immunosuppressed patients. There must be plenty about who are now fully vaccinated but with no idea of the level of protection they have.

[DazVin]

I really don't know BUT I am currently taking part in a study of 50 immusuppressed patients being conducted at Nottingham Queens Medical Centre to find out exactly this (I have GPA since 2016 and am currently having maintenance Rituximab annually).....so not sure how anyone can claim this as there simply isn't the evidence to support either way just yet.

I had a lot of blood samples taken before any Vaccine, then again just before my 2nd jab and again 1 month post my 2nd jab. The plan is for further samples to be taken at 3, 6 and 12 months post 2nd jab. So as I said previously I am not sure how anyone can claim anything either way before any studies have been completed?

[Dancerina]

My son and I see an immunologist at UCLA who is a member of their COVID team. I have CVID; my son has CVID and other immune deficiency problems (basically GPA / granulomas that form in his brain) for which he has been treated with long term prednisone, Rituximab, and now Tocilizumab.

One month after the second COVID vaccine dose, he had us both do blood work to test for how well we responded to it. I developed antibodies to it, but my son did not. The doctors reports that so far, most of his patients did develop a response to vaccine. Only a few did not. My son has no B cells from the Rituximab.

The doctor also says that by Spring 2022, there should be enough antibodies in the immunoglobulin supply to protect us with our monthly infusions.

[Galaxy2]

Hi amms43 I was tested for antibodies after my first vaccine and hadn’t produced any, I have since had my second but don’t know if that was more successful. I did have my first vaccine just 8 weeks after rituximab infusions so know this may have had an impact. I was told though that although I may not have produced any antibodies I may well have had immunity created through T cells.

I am due rituximab infusions again this month which I’m happy to have as the infection rate is where it is now.

It’s a difficult one I know, I shielded for so long but am going out now with caution but would like some reassurance that I have some protection at least.