Another Vaccine Question

[Exflex]

I’m taking Prednisolone for PMR diagnosed 12 months ago, currently transitioning from 10 to 9mg using the DSNS plan.

Three weeks ago I had a fairly minor chest infection (minor, that is, for individuals not taking steroids) and was prescribed antibiotics. With the infection came a cytokine storm and my GP told me to double my dose of Pred from 10 to 20mg for the duration of the antibiotics (5 day course).

I’m not worried about the CV vaccine per se, but what should I do if I get another cytokine storm? Doubling the dose of Pred could reduce the effectiveness of how my body uses the vaccine, but on the other hand it could keep me out of hospital if I get another cytokine storm and it spirals.

Any thoughts?

Thank you kindly.

[PMRpro Ambassador]

Discuss it with the doctor at the vaccine centre - and then cross the bridge if you get to it. It is actually normal practice to use pred alongside antibiotics these days, cytokine storm or not.

What do you mean by a cytokine storm? Who called it that? However - it takes more than 5 days to create the immunity and there are plenty of patients who will be getting the vaccine on 20 and more for the entire time if they have GCA and are still in the early stages.

[Exflex in reply to PMRpro]

Thank you for your prompt reply, PMRpro.Prior to phoning my GP practice I was shaking and running a slight temperature the night before. I was on 9 1/2 of Pred and took an extra 5mg which calmed my physical situation. I saw the GP and she diagnosed rattling in the rh lung and was prescribed 5 days of antibiotics and told to keep on the higher dose of 15mg for the duration. Later on the same day the GP phoned me at home and said I should increase to 20mg and she said I was experiencing a “cytokine storm”.

When you say it’s normal practice to use Pred alongside antibiotics are you saying doubling the dose as explained?

I think I’ll phone the Drs prior to my vaccine invite and see what they say. It’s a bit disconcerting to go into shock as I did, plus my wife is concerned not knowing what to do.

The joys of PMR and steroids!

[PMRpro Ambassador in reply to Exflex]

Not sure I would ask a GP - the people doing the vaccine have done extra training relating to the aspects of potential difficulties of the vaccines. I also suspect she may have been erring greatly on the safe side calling it a cytokine "storm" - especially since she didn't consider sending you to hospital!!!

No - I mean generally when someone has a chest infection, for some reason these days patients are given abx plus a short course of pred, I think 20mg is a normal sort of dose for the purpose. I think the general opinion is that keeping any swelling to a minimum seems to improve the results.

[Exflex in reply to PMRpro]

Thank you for your thoughts and quick response. This forum is a great help because many of us with the condition are left without much medical support, eg it’s up to me to phone the GP if problems arise (I’ve been up and down on Pred and the occasional discussion with rheumatology results in being told to reduce steroids - quite a common experience I believe).

[PMRpro Ambassador in reply to Exflex]

Tell us about it! I think most of the long standing members like me, DorsetLady and Snazzy as well as a lot of others are here because we were failed at some point by our medical team. We hope to provide sensible and founded advice for others in the same storm - we are all in different boats!

[Blossom20 in reply to PMRpro]

Yes, thank you for being there for us with sensible advice. Really appreciate it.

[Blossom20]

I'm worried about this too. I asked my doctor about antibody dependent enhancement and cytokine storm and she said she had not heard of it!I watched a scientific talk about it and the Dr was keen on giving Ivermectin followed by steroids. We have to put our trust in whoever is treating us I suppose.

[PMRpro Ambassador in reply to Blossom20]

That sounds like a US (or somewhere) "I'm brilliant and can cure x, y, z" plug. It isn't an approved medication and then they make up conditions to go with it all ...

[Blossom20 in reply to PMRpro]

No it wasn't like that - he really believed in it. He's my favourite of all the people I watch . He explains with little drawings! Indian. Dr Been!So don't we use it here?

[PMRpro Ambassador in reply to Blossom20]

It isn't approved - I think it is being looked at in a pilot study. Like DadCue - don't practise your theory on me unless I'm on the way out!

I'm sure he does believe in it. So did the French guy who was so positive about hydroxychloroquine, and I assume so did Trump. Say anything confidently enough and someone will believe you.

[Exflex in reply to Blossom20]

Your Dr hasn’t heard of ADE - what!! He or she must have missed several lectures on the immune system and immunology!I know little about the topic, but slightly more than Baroness Harding, maybe! Of those of us on Prednisolone above the physiological level, and / or above 5mg, we are at risk of runaway cytokines when we pick up an infection (I’ve had five in the last 13 months). As I understand it the only way to control the situation I described in my OP is the use of added steroids, then reduce (fairly rapidly) once the transient conditions have subsided.