Vaccine

[Uglow]

Iv been diagnosed with polymyalgia and my Gp said let’s settle things down a bit before covid jab. Opinions please

[PMRpro Ambassador]

Are you on pred already?I don't think I would wait - Covid kills the unvaccinated, and you may well have a flare of the PMR after the jab. Not everyone does but some do. Take the jab and run BEFORE you start pred.

[Uglow in reply to PMRpro]

I’m on pred

[cassie1208 in reply to Uglow]

Best to have vaccine as professor on pmruk advises - can’t remember his name. Up to you but it may give you relief from stress of getting Covid too which you can do without I guess right now - have a good think about the risks of catching Covid and what gp says

[piglette]

As PMRPro says I would go for the vaccination asap. How come you have not had your vaccination already?

[Uglow in reply to piglette]

Because Gp told me to wait

[piglette in reply to Uglow]

I wonder why he wants you to wait. I cannot see how things will change before you have your vaccine. I would have thought it is important that you should have it.

[Uglow in reply to piglette]

I also have Leiden v and fractured spine on blood thinners

[CT-5012 in reply to Uglow]

I’m on blood thinners I have had both vacs with no problems at all,I am also on pred. Get the jab Covid-19 kills.

[mgrogers99 in reply to Uglow]

Because of the Factor V Leiden diagnosis, careful consideration has to be taken about which vaccine would be safe and availability in your area. Covid kills but so can blood clots!

[Bcol]

My personal thoughts are to get the vaccination as soon as possible. It's your best protection.

[Shiv14]

Covid kills, a flare can be managed. Get the jab, you’re at higher risk because you’re on preds. Don’t take that chance.

[HeronNS]

You should get the vaccination. Apparently it doesn't make much difference what your dose of pred is, it will have a dampening effect on your immune response. Which is why it is very important that your first vaccine is followed up after the appropriate interval with the second dose as this may very well lead to almost as good immune response as in people not on immune suppressing medication.

You *may* have a flare of PMR symptoms but quite honestly I'd rather have that than covid. I think you'll find that the incidence of flares in ppl with PMR is no greater than the incidence of uncomfortable side effects in the general population. Some people get side effects, others don't. Most side effects are very minor and don't last long.

[GrandmaPirate in reply to HeronNS]

I had a flared up of PMR after first AZ vaccination.Pred was increase a months later from 1 mg/day to 6 mg/day and symptomen residentie slowly. Today I will have my second AZ injection. I will be relieved to have received the 2 injections. What is a PMR flared compared to Covid-19 ? It is manageable and pain, stifness will go over. Covid-19 caused by the delta mutant may be completely unpredictable.I will let the group know how well I did after the 2nd injection.

[Predderman2020 in reply to GrandmaPirate]

Yes - please do. Very interested to know! Thanks.

[HeronNS in reply to GrandmaPirate]

Just as a matter of interest, are you being offered the opportunity to have a second dose with an mRNA vaccine? I ask only because this is supposed to offer better protection against the delta variant, and is now the recommended procedure in Canada where a fairly large (mostly middle-aged) cohort has received AZ as their first dose.

[GrandmaPirate in reply to HeronNS]

No, in Belgium the second dose must be the same vaccine as the first dose.

[AliDeJ in reply to HeronNS]

Hello. I have never heard that we may have almost as good a response antibody-wise as people not on steroids...I thought nobody knew? Not even the people who make the jabs. I would love to believe it! Where did you learn this?

[PMRpro Ambassador in reply to AliDeJ]

It varies - and there are people on the forum who have been tested for antibodies who have good responses. You don't know which you are though. What IS certain though is that if you don't have the jab, you have no chance of developing antibodies if you haven't had Covid!

[HeronNS in reply to AliDeJ]

There was a study done, I can't put my hands on it at the moment, but it showed (I think with some surprise) that the second dose basically closed the gap in immune response which showed after the first one. Now there are things to consider, like what was the cause of the low immune response - which condition, which medicine, for example - and the gap between the two doses. (In my case I'm not holding my breath. When I got my first vaccine my second appointment was automatically generated - 105 days after the first! Since then the vaccine supply in Canada has increased wonderfully and recently we were able to shorten that interval. However I'd already been waiting a very long time and the gap was 76 days instead. Anyone getting their first doses now is doing fine, because they can book a second four weeks after the first. )

As PMRpro says, we are all individuals. My feeling is the chances of a good response are probably very good if the second dose is administered in probably longer than the initial recommendation (which was three weeks for Pfizer) but certainly in under the four months I was originally facing.

On the other hand we should probably start pushing for a third vaccine, a booster, for immune-compromised people. Probably not until the vast majority of the world has had a first dose, so not this year. I'm going to keep on behaving as though I'm at high risk because not enough people who can get vaccinated are getting vaccinated, even in our fortunate wealthy countries. I've just discovered one of the individuals in my tiny social bubble has no intention of being vaccinated. 😱 For no reason other than vaccine hesitancy, she has no health issues to cloud the decision.

[HeronNS in reply to AliDeJ]

This isn't the article I remember seeing, but it does mention different conditions and mentions the various kinds of immune responses the body mounts - it's not all about antibodies.

whyy.org/articles/how-do-co...

[AliDeJ in reply to HeronNS]

Thank you HeronNS for unearthing these two articles. An interesting read.

[HeronNS in reply to AliDeJ]

Found it! Scrolled through the multitude of posts I'd made on FB:

theguardian.com/world/2021/...

[Retallack]

Have had both jabs with no side effects.

[Grannyasbo]

Hi Uglow. Adding my voice to the PMR flare better than getting covid advice. As well as the risk of dying of COVID there is the long COVID risk which is very prevalent. There are lots of estimates of how many people suffer long covid. Here is one research study reported on that suggests 1 in10 sciencedaily.com/releases/2.... And that’s pretty poor odds to me on top of PMR. The vaccine reduces the risk massively of getting covid at all. I don’t know what your gp is getting at when she suggests waiting there may be a good reason. But then again it may be based on a a misunderstanding. May be worth exploring that with her more so you can make an informed choice yourself that you know the reasons behind. Good luck. GA

[Uglow in reply to Grannyasbo]

Thanks

[Flivoless]

I was diagnosed with "probable" PMR (the jury is still out - apparently?) a few weeks after my first AZ jab but, no doubt, that was merely coincidental. My second jab made no discernible difference to my symptoms. Personally I would get the jab ASAP.

[Karendeena in reply to Flivoless]

Hi there surprisingly enough I started symptoms after my second pfzir jab and was diagnosed with PMR following a blood test a week later. My inflammation levels were 67 so put on pred immediately. Not sure if coincidental or the vaccine caused the PMR and my doc isn't sure so had to report through the yellow card. Having said that I would have the vaccine again in a heartbeat

[123-go]

Clearly the jury is out on this. Get the jab, Uglow.

[Uglow in reply to 123-go]

Thank you all for advice

[Uglow in reply to 123-go]

Thank you for your advice

[Pixix]

I think you should ask your doctor why he thinks you should wait. As you can see from the majority here most of us have had both jabs (I think). My doctor just said to get either jab as soon as it was offered to me! I was offered a cancellation to get mine early. But there may be something in your medical background that says differently and I hope there is some reason he asked you to wait, but he knows the answer to that! Good luck!

[anutycrixp]

I just wonder if this is for doctors benefit,friend living in small village chatting to people in local shop and post office comparing reactions to THE vaccine .The local gp was swamped with queries and complaints.Eventualy sorted out and all had second jab with no problems! Perhaps doctor is being cautious although cannot admit this !However,unless compelling reason not to getting the covid vaccine it is really important to do so..get immunity a.s.a.p!

[PMRCanada]

I have had both jabs of Moderna vaccine. Actually had Covid when I had the first jab (unknowingly), it was the UK variant (B117). Although I was not hospitalized, our step dad was, and my brother in law (in his 80s with a pace maker), died.

I have also had 4 flares while trying to taper down my pred in the last 3 years of having PMR. So I’ve experienced it all.

I will share that I did not flare after either vaccine jab. I did, however, have a response after the second jab that included chills and low grade fever and a bit of fatigue for only 24 hours. So I’m assuming I’ve developed some anti bodies. Add to this the antibodies I developed while actually fighting the virus, and I’m fairly confident I have built up some protection.

Although my inflammatory markers went up whilst I had Covid (CRP went from 2 to 12), my GP said it was a good thing my PMR was managed well and markers were down before I got infected with Covid. I had to put my pred dose up a few mgs while actively infected, but have since tapered down to my original dose pre-Covid.

My GP was very helpful and provided information and guidance through it all. He admitted that some questions couldn’t be answered at this time, but believes we will learn plenty from the many auto immune patients who are going on this pandemic journey. In the end he said it was my decision to make about whether to get a vaccine or not….but he felt it was better to have some protection than none, especially with the new variants that are developing.

[GOOD_GRIEF]

Get the shot.

They're giving it to cancer patients and transplant patients, whose immune systems are far more compromised than ours. There's no reason to wait. All you're doing is prolonging the period during which you risk contracting COVID.

PMR can sure make you uncomfortable, but it won't kill you. COVID can kill you.

Get the shot.

[Uglow in reply to GOOD_GRIEF]

Personal choice

[GOOD_GRIEF in reply to Uglow]

Actually, it's your choice that is setting yourself up to be a vector that spreads the virus, and as a host for viral mutations that may elude vaccines.

Your behavior impacts other people, and you have a personal responsibility to limit that impact.

[Uglow in reply to GOOD_GRIEF]

Thank you for you advice

[Hoofprints in reply to GOOD_GRIEF]

bbc.co.uk/news/uk-57643063

This article is very interesting and shows that not everyone who takes the vaccine can make antibodies.

I think the way out of this pandemic is to follow a multidisciplinary approach and not rely on vaccines alone. The wearing of masks in indoor spaces and public transport (places where we all act as vectors of disease unwittingly) is also very important in terms of protecting one another. However many people are reluctant to continue doing this even though it is a non-invasive intervention.

Unfortunately, the government is about to endorse their approach on 19th July with little regard for the rest of us who remain vulnerable and immunocompromised! Hmmm...

[mgrogers99 in reply to Uglow]

I think readers missed your diagnosis of a serious clotting disorder.......not an easy decision.

[Exflex]

Where are you up to on your PMR journey? Even at the common starting dose of 15mg I would take the jab, 1st and 2nd. I was on 8mg when I had an antibody test and the test result indicated a positive, about normal on the distribution curve. I’m now on 7.5 and shortly will be trying 7 using the DSNS plan. The disease is in control and I’m fully conscious of that, but if I could get to 5 or 6mg in time for the autumn booster that would be great. In summary I would take the jabs, and the 3rd booster later on, by then you could be on a lower dose.

[CRW-68]

I had both injections of Moderna, first one In January. Last weekI had a Covid Antibody blood test and it was NEGATIVE. I have finally been able to taper down to 2 mg of Prednisone after starting at 60 mg 3 1/2 years ago. I am also on Actemra Infusions every 4 weeks.

I am very disappointed to say the least. The FDA says that you can get inaccurate false and negative results. Totally clear as mud.

I was hoping for some peace of mind, but No still in the dark.