I had reduced my intake down to 1mg by the start of Covid 19.I was worried about continuing to take it for fear of what it does to your immune system.I spoke with my doctor and he agreed with me.His advice was to take it on alternative days for a week then stop.
Since stopping I have had symptoms return,painful joints and tiredness.But I am determined to stay off in order for my immune system to return back to some normality.
Hi Bill
How long have you been on Pred? A lot of people Drs included felt at the beginning that Pred put us more at risk of catching Covid, however this has not proved to be the case.
I do have information on this but not to hand right now, PMRPRO possibly will & l’m sure she’ll reply before l’m back home.
If anyone has been on Pred for more than 3weeks we remain susceptible to our Adrenal Glands not returning to ‘normal’ for up to a year & we would be given additional Pred to counteract this.
Without wanting to worry you, the risk you are now running is a Flare of your symptoms which could adversely affect how your body would deal with Covid if you should catch it.
I’m on a moderate dose of Pred (12.5mg) but could not consider reducing except very slowly in the time honoured way, using a dead slow method. I’m also on Methotrexate which my Consultant wants to increase & at the beginning of the Pandemic, it’s seemed everyone wanted us to reduce our Pred no matter what......
I’m sure you’ll get many reply’s offering other opinions. Do you have any other underlying conditions? High Blood Pressure? Diabetes? Heart Condition?
Kind Regards
MrsN
I was on Pred for 12 months.
Therefore you have a similar risk as anyone on steroids.
I don't think that 1mg pred was going to impact your immune system with regard to Covid - no-one has any immunity to CV and the way to avoid getting it whether you are otherwise healthy or not is keeping your distance, wearing a mask and washing your hands. In fact, if you were to get it now, as a recent long term corticosteroid user, one of the first things that would be done if you were admitted to hospital with Covid would be to put you back onto pred. If you are on a low dose they double it.
In fact, what your GP has encouraged you to so is to allow the inflammation of the PMR to build up again and that, in itself, adds to the impact. Right from the start they classed PMR as as putting you at increased risk - any medication was then an add-on and they did say below 5mg pred was not a problem. It is less corticosteroid than your body produces in the form of cortisol anyway and which is essential to life - particularly if you develope infections or suffer trauma of any sort - and if you take less than that, your body simply produces more to top the level up to what is required.
We have a few people on the forum who have had Covid-19 - all have recovered well.
There is research froimperial.nhs.uk/about-us/ne...
Which confirms positive effect of steroids on covid19 patients. In my case my pred. was increased from 5.5 to 12 mgs. which I feel certain helped me from a paliative care case to pretty full recovery state.
Reduced to 6mgs after 11 days when I left hospital. Am not rushing to decrease, shall start 1/4 mg ultra slow reduction.to get to 5mg for 2021.
How are you doing petros? No long Covid for you I hope?
My quick reply has disappeared in cyberspace whilst writing, so you might get two messages. I have been very fortunate with my hospital treatment, double my pred, high volume of oxygen, and then an emphasis on breathing and muscle strengthening exercises. I was told that x-ray and bloods were ok, so yes, I am feeling that I am back to 'normal', can walk a mile and have only pmr related stuff ongoing.
I hope that there will be further research on pred/covid. Too many docs in primary care are scared of pred and rushing to get their patients off it, when in covid19 times the opposite is better practice.
Best regards. Petros
That's really good to hear - and yes, you are right - far too many doctors scared of pred without putting their brains in gear.
Keep up the good work!!!
That's good to hear.
hi,
Like MrsNails, I think you and your doctor are taking an incorrect decision - particularly on such a low dose.
As mentioned one group of steroids ( dexamethasone) has proved to be useful if a patient with Covid-19 is on a ventilator.
As you have only been diagnosed a year or so, then your PMR is still active, and TBH the more sensible option would be to return to a low dose of Pred to get symptoms back under control.
But, as always, it's your body, your choice.
I think the dexamethasone is being used as soon as there is any sign of needing oxygen to try and keep them off the ventilator in the first place - it is the cytokine storm that creates the need for ventilation before the airway swells up.
ok thanks.
The point being of course that when you are already on pred, you are less likely to get to that stage in the first place. Or is that the second place - I'm less likely to get Covid in the first place: SPACE, face and clean hands is what works, and then pred may well be a lifeline if that were to fail.
Think we are on the brink of a more general shutdown listening to all that's going on today! so "SPACE, face and clean hands" is even more important to remember!
At the moment locally we have 5 cases per 100, 000 whereas national average is 15....but no doubt we’ll all be clobbered.
I was disappointed there wasn't more emphasis on the SPACE bit because that is far more important than washing your hands - and to a great extent that is what you personally can do to protect yourself - avoid people!!! And face is up there too - it got me extra exercise this morning: I walked into the village for milk, got to the top of the slope and realised I hadn't got my mask! So had to turn round and do it all again! Don't need it on when out walking!
I’ve done that before...now try and keep one in pocket or in car (whatever doing) - have hair appointment this afternoon - maybe in the nick of time!
Must be the change in seasons - I have a mask sitting on top of my sunhat without which I didn't leave the house until now. Didn't think I needed it this morning - though it wouldn't have been out of place.
I have to say that the GP who advised me to reduce and then stop my pred was not the same GP at the surgury who initially diagnosed my PMR and prescribed Pred. I was unable to see her as she is on sick leave.
That’s useful then!
Hope all goes well, do you take any supplements / use alternative therapies? I am currently at 2mg and have just started taking tissue salts - ferr phos (easily obtainable and not that expensive) and a course of acupuncture to help my body adjust as I reduce- all going well so far but very aware that things could change, best wishes
Reducing for 2nd time 
Reducing cluelessness
Reducing
Reducing Symptoms 
