Negative blood test for antibodies post vaccinations!

[MavisEllen]

I am wondering if anybody else with GCA and PMR and on steroids , prednisolone, having had both of the Oxford Astra-Zeneca vaccinations and then following a wait of 3 weeks and on the advice of their GP has had a blood test for antibodies. I also have steroid induced diabetes, and frequent shingles and cellulitis, (sorry but I never do things by halves) The result has come back negative to antibodies."No serological evidence of SARS-COV2 antibodies. Should I be concerned?

[PMRpro Ambassador]

A few people have reported their antibody tests - with mixed results. You might find links to them under the Related Posts heading. It isn't all about antibodies - and there is no known relationship between the antibody level and the degree of protection. Another part of immunity is to do with the longer term memory via t-cells and b-cells and that isn't measured in the antibody test. It also isn't yet clear how long we may need to develop measurable antibodies when on medication - it could be even longer than the 3 weeks.

Personally, I'm not changing my behaviour at all. It has got me this far. and once the level of the virus is really low in society we too will be at less risk.

[MavisEllen in reply to PMRpro]

One of the GPs at the surgery here in Bournemouth advised me to have an antibody test after a three week period after my second vaccination. She said this even before I had had my first one. She was treating me for yet another outbreak of shingles at the beginning of January and warned me because I have so many infections three chest infections, two bouts of cellulitis and three recurrences of shingles in the last year she said that my t-cells might not be activated and my immunity is already compromised. I was diagnosed with GCA in February 2017 and PMR in 2019 also steroid induced Diabetes in Jan 2019. I am currently taking 5mgs of Pred daily and as I have become quite unwell when I have tried to reduce have been told to take 5mgs for the rest of my life. My headache is quite bad at the moment and I am having a face to face consultation tomorrow with a GP I trust. I learned today that I have 3a grade CDK, Chronic Kidney Disease and the junior doctor told me over the phone that it was nothing to worry about as I have had that since 2018. It was such a shock as this morning is the first time I learned my GFR is 48 and my serum creatinine is 98. My Hba1c is also rising and I am taking Metformin. I am hoping that I get some answers tomorrow as I rarely feel well for longer than 3 consecutive days. However, I try to keep occupied and not feel sorry for myself as I know there are far worse situations that are affecting others. I just want to feel safe I have been shielding since March 2020 have only been beyond the gate 26 times since then and 4 of those were for medical reasons. Thank you for responding

[PMRpro Ambassador in reply to MavisEllen]

Have you tried cutting carbs drastically? Especially processed ones and added sugar of all sorts? We recommend it all the time and several members have reversed rises in their Hba1c after starting pred. Pred causes the liver to release random spikes of glucose into the blood stream from the body's muscle stores of glycogen. You can't have any control over that but you can do something about the dietary carbs that also contribute to the Hba1c and it is often enough to tip the balance.

[piglette]

Are GPs offering anti body tests? I thought people had to pay for them in our case??

[MavisEllen in reply to piglette]

My GP recommended that I have one and therefore it was free but I was told this morning that generally the doctors are not advocating that people should have antibody tests done.

[Pixix]

No but I am thinking of paying for one! But are you saying your gp did your antibody test, free? Sorry you don’t have any there was a post a few days ago you can look for on the same subject. Sorry I can’t remember who posted it! Brain fog!

[MavisEllen in reply to Pixix]

My GP recommended that I have one and therefore it was free but I was told this morning that generally the doctors are not advocating that people should have antibody tests done.

[Pixix]

PS I’d be interested to know what dose of Pred you are currently taking, please? Thanks!

[MavisEllen in reply to Pixix]

I am on 5 mgs but it might be increased tomorrow as I have had a headache from hell since the 2nd vaccination. After the first vaccination in January, the Oxford Astra-Zeneca I flared for 2 weeks but the 2nd jab was on 11th of April and things have not resolved yet. Shingles broke out yet again and cellulitis and of course this headache.

[Pixix in reply to MavisEllen]

Thank you. I had a headache for a week after the 2nd jab, and to be perfectly honest I can’t remember the last time I had a headache...I just don’t get them! I hope the problem is now resolving for you. Take care, S x

[Karenjaninaz in reply to MavisEllen]

Are you taking Valtrex to treat the shingles?

[membership]

Hi MavisEllen

I have a three year history of GCA and am trying to reduce my steroid intake. I began on 60mg and each time I get down to about 7mg, I have problems and have to increase again... [ SO frustrating ! I' ve had both doses of AZ vaccine... no symptoms at all from either dose, but I am a participant in the Virus Watch programme (from UCL) and my monthly blood tests show I have S antibodies, which are from the vaccine (and no N antibodies, which I would have had from a Covid infection). My understanding is that most people would have S antibodies, but most does not mean everyone. I can only suggest you wait a little longer for the antibodies to develop; otherwise you might need to discuss it with your GP and go for a booster dose?

[PMRpro Ambassador in reply to membership]

If you repeatedly flare at a similar dose it means that is the dose you need - you aren't reducing relentlessly to zero, you are looking for the lowest dose that you need to get the same relief as the starting dose gave you. GCA often lasts 4 to 5 years.

[Cumbria in reply to PMRpro]

I can't say I agree with this comment. In my own case I followed a similar path to MavisEllen diagnosed with PMR and GCA in 2009. My highest dose was 80 mg every time I got down to 15 mg I relapsed but my syymptons didn't improve. After the last relapse where my symptons simply got a lot worse than the ones I had all the time I decided enough was enough. So I took control of reducing my Pred by doing it ever so slowly and I do mean slow. It has taken me nearly 5 years but I am now down to 4 mg. I was diagnosed with Rhuematoid arthritis and inflammatory osteoarthritis in 2018 and now also have to have a Biologic injection once a week, no idea if that has helped or not I'm afraid. Turns out I am steroid resistant and to most other drugs as well. Good luck in your journey Mavis and I hope you can get your dose of Pred further down as long as you take it down incredibly slowly and in 0.5 at a time.

[MavisEllen in reply to membership]

Thank you for taking the time to respond. I am hoping to have some issues clarified in a face to face consultation tomorrow. I was diagnosed with GCA 4 years ago and PMR 2 years ago.

[MavisEllen in reply to membership]

Thank you for taking the time to respond. I am hoping to have some issues clarified in a face to face consultation tomorrow. I was diagnosed with GCA 4 years ago and PMR 2 years ago. As I have had really bad flares when I try to reduce below 5mgs I have been advised to permanently remain on 5mgs daily.