Degree of immune supression

[apttony]

Has there been any evidence of the degree of immune supression relative to the amount of prednisolone that a person is taking? In other words, if your daily dose is less than 5mg /day for, say, several months, are you in a better/safer position, than if you were taking 10mg , or 20mg/day for several months?

[PMRpro Ambassador]

There is an increased risk of infection in RA patients anyway - so maybe it is a bit difficult to separate the sheep from the goats - but this conclusion was reached in this review study, covering a lot of other work:

"Conclusions

While RCTs of corticosteroid use in rheumatic diseases have not reported an increased risk of infection, observational studies have found a consistently elevated risk of infections (both serious and opportunistic). Given this, the risk-benefit ratio must be kept in mind whenever long-term steroid therapy is considered.

The current EULAR recommendation for the use of corticosteroids in RA patients is to use low dose steroids for a limited time period during initial therapy for RA. However, given the risks of such therapy, this should be individualized so that certain patients with existing risk factors for infection (e.g. elderly, diabetes, other co-morbidities) might avoid such therapy or use only in a limited fashion. Proper patient selection, vaccination, and screening can limit the infection risks and should therefore be pursued in any patient taking corticosteroid therapy."

​

ncbi.nlm.nih.gov/pmc/articl...

Personally I haven't experienced any increase in infections due to taking pred. I had a history of UTIs long before being put on pred for PMR and much of the problem post pred was associated with calcium supplements. I'd say I've had fewer colds etc since being on pred - one humdinger a year was standard before Covid. Don't think I've had one since!

[apttony in reply to PMRpro]

Thank you PMR. However that report is pre-COVID, and is far to detailed for my non-medical detailed understanding. My main concern is directed at how COVID, should I catch it, is going to affect me. More like if I'm taking more than 10mg/day pred, effect could be serious; less than 10 and greater than 5 - possibly severe; less than 5mg/day, mabe okay.

I accept that we are all different, reactions will differ, and that this is very simplistic, but looking for some reassurance. I haven't seen my children and grandchild for over 2 years, mainly because they are not local. I'm currently taking 5mg/day, and just feeling some evidence of aches and pains returning, but hope to stay with reduceing further.

[PMRpro Ambassador in reply to apttony]

Infection risk is infection risk - whether it is Covid or anything else. It's unlikely there is much work available yet re Covid.

That is a similar dose of steroid to what your body would produce in the form of cortisol. I have been on 15mg plus the whole time of Covid and haven't been able to avoid contact with others - I have gone shopping in supermarkets the whole time. I haven't caught Covid yet. There are a lot of people on the forum - pretty much all of whom are on pred though I don't know what dose - who have had Covid, especially recently. If you have had your jabs, the primary course of 3 in particular, you are at the same level of protection as any others. The pred is possibly protective - no-one really knows but it will have an effect on any inflammation developing. My rheumatologist doesn't consider his patients on less than 20mg as being at increased risk, I asked about the antivirals here as I didn't know what the protocol is here.

I haven't seen much of my children either - they live a thousand miles away in the UK. They were here in the autumn when their father died and again a couple of weeks ago to visit. My grandchildren are not small, they haven't been at all since the xmas before Covid. My daughters both work in the NHS as frontline staff - but I had no compunction about seeing them. They flew here both times - exposed to Covid while travelling, No problems.

If I were on 5mg I'd be visiting the kids.

[Sharitone in reply to PMRpro]

That would be naughty, seeing as you're on TCZ😜

[PMRpro Ambassador in reply to Sharitone]

Why naughty?

[Sharitone in reply to PMRpro]

Visiting the kids with TCZ immunosuppression.

[PMRpro Ambassador in reply to Sharitone]

They visited me last week! If I were to go to the UK it would be with my car though - too much chaos with flying!

[Sharitone in reply to PMRpro]

😀 I must say, although I am supposed to be 'severely immunosuppressed, our son who lives with us got Covid and was really ill for 2 weeks, but we never caught it.

[PMRpro Ambassador in reply to Sharitone]

I'm far from convinced about the "severely immunosuppressed" designation applying to us - we are on pred yes, I'm on TCZ as well, but no-one here has suggested to me that I am at GREAT risk. Apart from anything else. the pred and TCZ should protect us from the second stage of Covid which is the dangerous one where there is an inflammatory reaction that can overwhelm the body. The vaccines have made a massive difference - and are still effective even for the mutations in protecting us from serious/life-threatening illness. We are at a very different place than we were 2 years ago when these designations were first made.

[SnazzyD]

I certainly noticed a reduction in opportunistic infections in the bladder, eyes, skin and gut as the dose went down. Above 15mg was worst, 10mg seemed to be a turning point and at 5mg it seemed normal.

[apttony in reply to SnazzyD]

Thank you Snazzy. Labelled at the offset as Extreley Vulnerable, I think that I'm been very lucky, in that I have, in the main, only suffered from the usual siide effects, of thinning skin with heavy bruising, loss of muscle strength, fatigue, poor balance, poor sleep, and mood swings, etc. Oh, and serious itching, especially at night.

But I want to see my children!

[SheffieldJane in reply to apttony]

It is important to take care of your mind and spirit too. I see my daughters and their children who live in Australia in September, all being well. I know that this will boost my well being like nothing else could. ❤️‍🩹

[Songbird69 in reply to SheffieldJane]

I totally agree. I am on biologics and Pred, and despite two covid vaccinations, have no antibodies.I wasn’t seeing anyone for so long, and I felt depressed.

I have decided that a balance is needed, and I see my daughter and twin grandsons regularly. I still open all the windows if we are inside and wear a mask in the car. We try to spend as much time as possible outside, and my daughter tests before she comes.

These times are the highlight of my week and I won’t give them up for anything!

All down to risk management and where there’s a will …..

[PMRpro Ambassador in reply to Songbird69]

Two jabs for the immunosuppressed isn't enough - the third in the primary course is essential to boost the antibody formation. And then the 4th is equally essential after some months to keep them up.

[apttony in reply to PMRpro]

Between vaccines and booster, I had 5 of them so far. 😀

[PMRpro Ambassador in reply to apttony]

If you look - my reply was to Songbird69 who said she has had 2 - not enough.

[apttony in reply to PMRpro]

Yes, after your comment about 2 not enough, I went looking what had promoted that, and I was only trying to emphsaise your point. 😀

[Songbird69 in reply to PMRpro]

I know. You are right. But each of the first two vaccinations landed me in hospital five times with sepsis and permanent damage to my intestines - hence now on biologics for Crohns as well as Pred for PMR.

I have been told not to have any more because of the risk of it happening again. Having just retired at the beginning of lockdown, life ain’t what I was hoping it to be. 🥲

[PMRpro Ambassador in reply to Songbird69]

Fair enough - that is a difference case altogether. I can sympathise - my retirement hasn't really been what I'd looked forward to but nothing like as bad as for you. Hugs

[Songbird69 in reply to PMRpro]

Well - if I lived in Italy, I am sure we could get up to some mischief! Or at least a few ☕️ ☕️!!Maybe one day, covid will take a bit of a background seat and we can both do some of the things we had planned to do. Think positive!!

Hugs to you too.

[PMRpro Ambassador in reply to Songbird69]

Traveling around Europe with my husband in our campervan was high on the programme but his health didn't allow it. just as well I love where I live!

[Songbird69 in reply to PMRpro]

I was going to do something similar but my man sadly passed away too, 6 years ago. I would love a campervan but a)

wouldn’t be able to drive it and b) wouldn’t want to do it on my own.

So that’s the end of that idea!

[PMRpro Ambassador in reply to Songbird69]

It was my dream that kept me going last summer - little van and head off on my own. But the world has discovered camping - dogs and Covid secure they think - and the sites are heaving. I'll let the novelty wear off ...

[Songbird69 in reply to PMRpro]

Never say never. 😊

[Sharitone]

naughty but nice!

[tangocharlie]

Rheumatolgists get very worried about a high Cumulative dose of Pred being bad but I don't know the research on it. Dread to think what mine is after all these years, milligrams must have added up to kilos. However, although I struggle with many side effects of Pred on a daily basis and would like to be on a low dose again one day, my bones are fine, so is my heart and other crucial organs

[PMRpro Ambassador in reply to tangocharlie]

Dasgupta panics from 10g. I'm at nearly 20g in the last 2.5 years! And there were more than 10 years before that. No diabetes, bones still working, overweight but not Cushingoid. And I have had 13 years of half decent life - unlike the previous 5 years.

[HeronNS]

For what it's worth where I live there was a list of conditions which allowed a person to get a third primary covid vaccination, and later on eligibility other than age for 2nd booster. The list included 20 mg (or higher) of pred for at least two weeks. Under 20 mg and you didn't qualify as sufficiently immune-suppressed. No attention paid to length of time on the medication if you had been taking a lower dose.