Pred and colds, and pmr burn-out

[CaraDee]

Hi All.Probably both silly questions, but firstly, do other people with PMR keep getting colds? One after the other? I am tapering down from 10 mg.

Secondly, I've read that PMR often burns out after 2 years. So does this mean that if I taper down to 0 or 1mg across 2 years, the PMR will have gone as I get to 0?

Many thanks

[Kendrew]

Hi CaraDee,

Firstly I can only speak from my own experience, and personally I haven't experienced recurrent colds or any other similar viruses during the 4½yrs I've had PMR.

Obviously, steroids can and do suppress the immune system but to what extent will vary from person to person and will be dependant on each individuals health circumstances, medications, how long they've been taking steroids and their dosage.

This will mean that some people will be more vulnerable than others and therefore more susceptible to catching these viruses.

Unfortunately, a lot of the literature you'll read pertaining to PMR tends to be somewhat out of date and not in line with more recent and more accurate data. This more recent data clearly suggests that although PMR can and does diminish for most people over time, it is only a very small minority for whom this would occur within a 2yr framework.

For the majority of people diagnosed with PMR, 5 to 7yrs is now known to be the average duration time and a much more accurate and realistic time frame.

As for tapering.... the steroids are not curing the PMR...they're merely reducing the inflammation it causes. So if you taper too fast or by too much you then may not be taking enough steroid to deal with that current level of inflammation and symptoms will re-occur. This is because the PMR is still active. This means that its crucial that all tapering is done very slowly and mindfully so as not to cause a 'flare' of the condition.

Take a look in the FAQ'S section where you'll find lots more information to help you.

Others with more knowledge will be along to advise you further too.

[DorsetLady PMRGCAuk volunteer]

econdly, I've read that PMR often burns out after 2 years. So does this mean that if I taper down to 0 or 1mg across 2 years, the PMR will have gone as I get to 0?

Sorry it doesn't work like that, for some it only lasts 2 years, for others considerably longer - so you reduce according to your PMR - it does the leading, not the Pred [steroids].

Maybe have a look at this -

healthunlocked.com/pmrgcauk...

When on Pred your immune system is suppressed, so you may be more prone to getting infections - but it does seem to be an individual thing.

[CaraDee in reply to DorsetLady]

Thanks, both.

Interesting info in the link.

I've fallen into the trap of trying to rush things again. (Though I'm not going to make that mistake with the tapering again.)

I guess it will take as long as it takes. Mind over matter doesn't work with PMR.

There is so much support on this site. It really makes a difference. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to CaraDee]

I guess it will take as long as it takes.

Absolutely correct - just wish some medial folks would appreciate that...

[PMRpro Ambassador]

For a start, the "2 year myth" as Prof Sarah Mackie has called it, really only applies to a relatively small cohort of patients , considerably under a third of patients and that includes a batch who are off pred in a lot less time and probably never had the PMR we talk about at all. As there is no diagnostic test it is very difficult to tell,

Some people find they catch colds - like Kendrew I very rarely get a cold, paper tissue manufacturers won't make a profit out of me!

But you have mentioned the key point - it will take as long as it takes!

[piglette]

Sadly no one has told the PMR it only lasts for two years, so it may go away in less time or in a lot longer time.

[Gimme]

I've read that feverishness and chills can be common for people with PMR. Periodically, I get a sore throat and feel like I have a cold coming, but it never actually arrives. I just feel rubbish for a week or two and even ore exhausted than usual. I wonder if that is similar to what you are experiencing? If I do get a viral infection, the PMR symptoms kick off big time for me.

[CaraDee]

Thanks for all the comments. Maybe it's nothing to do with pred. My working conditions are pretty poor - v noisy all day (working full time) - and I'm away at my partner's every weekend, during which we go out a lot, so maybe this is why I am exhausted, run-down and prone to cold after cold! 5 years til retirement. Can't wait!

[PMRpro Ambassador in reply to CaraDee]

It would certainly have done it for me!!! And being so stressed is also a reason for succumbing to coughs and sneezes. I think your body is trying to tell you something. Pushing yourelf doesn't help PMR - it is a serious systemic illness and not one you can push through by ignoring it.

[CaraDee]

Thanks. You are right! I have just ordered ear defenders. Hopefully that will reduce the workplace stress. Maybe if things don't improve, I'll take a hit on my pay and reduce to a 4-day week.

[Mayadill in reply to CaraDee]

Hi CaraDee, out of interest, what're the air-quality and temperature like and if lousy is it faintly possible you could move to somewhere they're better. I've worked in internal offices with no windows at all and in an open plan office with sealed windows. In the internal office it was permanently tropical and in the open plan bugs just jubilantly leapt from person to person. You know how they advised during Covid open the windows, yeah and what planet are they on. Fortunately I'd retired by then.

[CaraDee]

Hi Mayadill. Thanks for asking. I'm in a nice upstairs office of my own (house conversion) which I think is way over-insulated. It's hot all the time, hence my need to open windows. But then I am disturbed by constant noise outside. I'm hoping the ear defenders will help.

When I first developed PMR, just over a year ago, I was working in a smaller office, sharing with two other people - crowded and noisy. I was in so much pain that I spent regular breaks laying downstairs across a row of chairs. I suspect this is what tipped me over the edge. I got to the end of my tether and was talked down by colleagues who then helped me move into an office of my own (luckily someone was leaving our organisation, so an office became available).

Things are certainly so much better than they were. Just need to sort out the noise problem now!