Too many auto-immune conditions and the booster jab?

[Stealhsquirrelnutkin]

I went for my booster jab this morning. Before administering the injection the nurse wanted the answers to a lot of questions. Most of them were familiar from the previous two vaccinations, and I had my sleeve rolled up ready as I trotted out the same answers.

The question "Do you take any medication for immune related conditions" was new. I replied that I take hydroxychloroquine for Lupus and Rheumatism, levothyroxine for the after effects of Hashimoto's thyroiditis, a steroid inhaler for asthma, and insulin for type 1 diabetes. None of them were on that list of medicines for conditions that got you classified as clinically extremely vulnerable at the start of the pandemic, so I was sure there wouldn't be any problem.

The nurse didn't agree with me, she wants to know if I take medications for any other health conditions? I rattle off the list, and she says I have too many auto immune conditions. She needs to go and consult with their immunology expert to find out if she can give me the booster as planned.

After a long wait she comes back and tells me that because of my naff immune system they won't be able to give me the Moderna booster as planned, and I have to come back another day to have the Pfizer booster, which has been shown to work better on people with clapped out immune systems who have previously been given two doses of the AstraZenica vaccine.

Well, that was news to me! Has anyone else had the same experience? They did say that their guidelines were evolving constantly as they get more information. I'm very glad that the health service are using all the new data that is being gathered about the vaccines, and using it to improve my chances of mounting a decent immune response.

At the same time I am baffled as to why I had to turn up for my booked booster vaccine before the questions were asked. My GP and the rheumatology and diabetes consultants have all my medical records, but the information didn't get passed on.

So, if you have a shedload of auto-immune illnesses, save yourself the bother of being turned away from the Moderna booster, and arrange to have the Pfizer one before you make the journey.

I also had the Pfizer jag today after 2 Astra Zeneca. I asked why and the nurse didn't really know.

I am coeliac and currently trialing levothyroxine for possible Hashimoto hypothyroidism. I am in good health and tahr no other medication.

Well I am / was in the clinically extremely vulnerable group and have Addison’s disease, lupus, hypothyroidism, asthma, a pituitary tumour, kidney issues and sjorgens syndrome and take 22 medications a day including 20mg hydrocortisone steroids and asthma steroids inhalers.

I had the Moderna booster after 2 x AZs and was absolutely fine. Felt like utter shit for 3 days afterwards so I assume I had some sort of immune response going to it….!

My two specialists and the nurses at the centre didn’t bat an eyelid or question anything at all. Not sure if they should have now!

They didn't even ask me! I had my third vaccine, had filled in a form online but it didn't ask about medical conditions except allergies
My bum barely touched the chair as she jabbed me and bustled me out

@Stealhsquirrelnutkin

I went for my booster jab this morning. Before administering the injection the nurse wanted the answers to a lot of questions. Most of them were familiar from the previous two vaccinations, and I had my sleeve rolled up ready as I trotted out the same answers.

The question "Do you take any medication for immune related conditions" was new. I replied that I take hydroxychloroquine for Lupus and Rheumatism, levothyroxine for the after effects of Hashimoto's thyroiditis, a steroid inhaler for asthma, and insulin for type 1 diabetes. None of them were on that list of medicines for conditions that got you classified as clinically extremely vulnerable at the start of the pandemic, so I was sure there wouldn't be any problem.

The nurse didn't agree with me, she wants to know if I take medications for any other health conditions? I rattle off the list, and she says I have too many auto immune conditions. She needs to go and consult with their immunology expert to find out if she can give me the booster as planned.

After a long wait she comes back and tells me that because of my naff immune system they won't be able to give me the Moderna booster as planned, and I have to come back another day to have the Pfizer booster, which has been shown to work better on people with clapped out immune systems who have previously been given two doses of the AstraZenica vaccine.

Well, that was news to me! Has anyone else had the same experience? They did say that their guidelines were evolving constantly as they get more information. I'm very glad that the health service are using all the new data that is being gathered about the vaccines, and using it to improve my chances of mounting a decent immune response.

At the same time I am baffled as to why I had to turn up for my booked booster vaccine before the questions were asked. My GP and the rheumatology and diabetes consultants have all my medical records, but the information didn't get passed on.

So, if you have a shedload of auto-immune illnesses, save yourself the bother of being turned away from the Moderna booster, and arrange to have the Pfizer one before you make the journey.

I have medicated but slightly out of control Hashimoto’s and PCOS and was given Pfizer ( after two Astrazeneca which I was ordered to take by my consultant because Hashimoto’s sufferers are more likely to get severe and long covid) because it is more effective. For people with autoimmune conditions catching covid can mean a death sentence so we need the best combination possible.

I think it's because you are entitled to a third primary dose instead of a booster. You should be able to have moderna as a third dose if they didn't have Pfizer available, but it would be a full dose instead of the half dose they give for a booster.

You see I’ve heard the opposite about Moderna and Pfizer as boosters- there is a thread on here about it and the advice / information posted seemed to suggest Moderna offered better protection. To be fair I’m not sure there’s a lot in it really.

I have Coeliac disease and got the Moderna booster earlier this week (having had 2 x Astra Zeneca previously).

This thread here -

www.mumsnet.com/Talk/coronavirus/4403057-Pfizer-Moderna-booster-after-AZ-initial-jabs

I am extremely clinically vulnerable, so much at risk that I had a third primary, not a booster. I had my first 2 primary injections as Pfizer because of being extremely vulnerable and I was told as a very vulnerable person I must have Pfizer for my third primary and then in 6 months a Pfizer booster.
I don't know why.

I have auto immune issues (SLE, APS, Reynaud's, CKD and heart arrhythmia). I went for my booster today and after a long conversation with the nurse I had a Moderna booster (after two AZ primary doses).

I now feel fairly crap, but I expected that!

On the good side, I was still showing antibodies from the original two AZs, almost 7 months after dose two. (ONS study)

I don't think anyone understands auto immune diseases; they are probably making up their own rules.

Interesting, Dd has a number of auto immune illnesses but doesn’t actually take any medication so such a question won’t pick up her auto immune illnesses. Or do they also ask if you have any chronic conditions?

@CovidCorvid

Interesting, Dd has a number of auto immune illnesses but doesn’t actually take any medication so such a question won’t pick up her auto immune illnesses. Or do they also ask if you have any chronic conditions?

I don;t take medications either. I should be on blood thinners but because of my kidney involvement I don;t. And I was thinking about HCQ when covid first struck and haven't had the opportunity since.

The nurse at the mass vaccine centre did ask a lot of questions, but seemed very uncertain as to what my answers actually meant. She asked if I had a "letter from my doctor"? Which one? Saying what? (No, I don't)/ Reading between the lines, it seemed as though there was more interest in medications than conditions.

I have as you say, a shedload of auto immune diseases. It's not the diseases that's the problem it's the drugs you are on. They mean your 1st two doses of any vaccine were less effective and you need 3 primary doses followed by a booster in 6 months.
Im not sure but it may be tha only pfizer is authorised as a 3rd primary dose? Moderna as a booster is only half a dose.
I would contact your gp or consultant and make sure you get that booster in 6 months.

I went for my booster a couple of weeks ago and they gave me a 3rd primary of full dose Pfizer instead of the half dose Moderna booster. Same reasons, I'm on the same hydroxychloroquine and levothyroxine as you though no diabetes or asthma.

I was added to the shielding list in February this year though, after they ran the numbers on deaths to date. That was fun.

I do vaguely remember reading somewhere quite recently, that people with certain health conditions were being recommended to have the Moderna booster instead of the Pfizer one. Was it something to do with hearts and blood thinners? The nurse did ask if I took any heart medications or was on blood thinners, and I don't. Perhaps if I had said I did they would have given me the Moderna after all?

Also, I just remembered that she did first say something about only being able to give me a reduced dose today, and that I'd need to come back again for another shot later. But the chap with the laptop said they'd stopped doing that now, and he didn't think it would be possible. That was before she went off to consult with their immunology expert, and came back to tell me it had to be the Pfizer booster because of I had "too many auto-immune conditions".

I really wish I'd had the presence of mind to ask her where the tipping point is, between an acceptable number of auto immune illnesses and TOO MANY?

Also, big thanks to everyone who has contributed to the thread. I have found reading about all your clusters of auto immune illnesses strangely comforting. I think on some level I was feeling as if I'd been rebuked, for having accumulated much more than my fair share of the buggers (as if auto-immune illnesses were slices of delectable cake). Despite knowing that the likelihood of developing an auto-immune condition increases once you've snaffled your first one.

I have
Autoimmune neutropenia
Cholinergic and spontaneous urticaria
Hashimotos
Vitiligo
(Not autoimmune but inflammatory) hidradenitis supprativa
My consultant "if it's rare and hard to spell, you'll have it"

I think that's it! The neutropenia is what triggered me having the third primary vaccine

They didn't even ask me! I had my third vaccine, had filled in a form online but it didn't ask about medical conditions except allergies
My bum barely touched the chair as she jabbed me and bustled me out

That's exactly what happened with my first two vaccines. How long ago was it when you got your booster? I wonder if this cross examination about health conditions requiring medication is a new thing?

I'm not looking forward to making the exhausting journey back to the vaccination centre again tomorrow, but at the same time I'm really grateful that they are following the evolving science and giving me the best shot at mounting a strong response.

I intend doing another test for vaccine antibodies in early January, to compare with the tests I did 6 and 12 weeks after the second dose of AZ vaccine, and again at the start of this month.

I'd read that the AstraZenica vaccine took longer to reach similar levels of antibodies to those produced after the mRNA vaccines, and levels would continue to increase gradually for 12 weeks, so when the test at six weeks found 176 U/mL I was expecting the level to be higher at the 12 week mark. It came as a shock to see that instead of increasing they had halved, and were down to 87.2 U/mL.
I did a third test in the first week of November, wanting to check the levels before I got my booster. Depressingly, but predictably, considering they'd dropped by half in six weeks, this third test ten weeks afterwards, came back negative, "no discernible antibodies found". I really want to get my booster sorted as quickly as possible!

My sister, who has her own impressive collection of auto-immune illnesses became curious after she heard my 12 week result. She and her husband both took the same vaccine antibody tests 14 weeks after their second vaccine dose. She had Pfizer both times and at 14 weeks her test came back saying she had more than 2500U/mL which is the highest level the test is able to register. Her hubby who also has a few health conditions was given AZ both times, and his antibody levels were still at 1600U/mL 14 weeks after the second dose. Proving that different people with similar underlying conditions, can get very different results. Just because my immune system decided it was more interested in attacking my joints and mucus membranes rather than building antibodies to fend off a deadly virus doesn't mean that yours will be as bloody useless and annoying.

I'm glad I could afford to pay for the three tests though, even if the results weren't what I was hoping for. I found I was less tempted to take chances and trust that the vaccine would keep me safe, after having seen those test results.

24th October I had mine

What tests did you pay for stealth?

My T1 diabetic husband, and my asthmatic, T2 diabetic and elderly mum both had Pfizer boosters. I’m asthmatic but had Moderna. No idea why. Mum and husband were both fine after their boosters whereas I felt quite nauseous. I’ve heard moderna is more effective but has more side effects so I did wonder if maybe that was why they didn’t give it to more vulnerable individuals.

Got some more information today from the nurse doing my vaccination. She said the reason they couldn't give me the Moderna yesterday was more to do with it being the booster dose, which is half the strength of the full vaccination dose.

When the nurse went to talk to the on-call immunologist yesterday a decision was made to change my status on the computer system, moving me back into the CEV category.

Today's nurse said the GP surgery seems to have missed including some information, leading to my getting a letter in February this year saying I was no longer classed as CEV.

Having moved me to the CEV category yesterday they couldn't give me the half strength Moderna booster, since I was now due a third vaccination and not a booster. All the Moderna booster doses were drawn up in advance. If I'd known that yesterday I would have suggested they give me two Moderna jabs, though that would probably have given the computer system indigestion.

Today's vaccinating nurse said that the main reason I was told yesterday that I must have Pfizer, is that the Pfizer booster dose is the same as the vaccination dose. Meaning that I could turn up for a third vaccination on a day when they were giving Pfizer boosters and get the same injection as my third vaccination.

I'm just over the moon to have it done, and glad to know that I will be called back to have a booster in 6 months time.

Also my arm is already feeling heavy and a bit hot and weird, and I am delighted because it feels like something is happening.

What tests did you pay for stealth?

monitormyhealth.org.uk/covid19-vaccine-immunity-test/

They use the Roche Anti-SARS-CoV-2 S test

I posted the blood on Sunday night, to go with the Monday morning postal collection, and all three times the e-mail with the results of the test have arrived on Wednesday afternoon or evening.

My consultant added antibodies onto my 4 weekly bloods- I've had 3 now, worth an ask to save paying for it?

I felt lousy yesterday after my Friday Moderna (aches, fever, headache, unable to stay awake, foggy) but today I am just a bit tired. It feels worth it - and I hope yesterday's unpleasantness was my immune system kicking off i a positive way.

Oh, and the sore arm of course!