Very Obvious Question

[Golf-1]

I realise that compared to some on here 18 months of PMR is not very long, but having now revisited 7mg of Pred for the 3rd time after what I assume were flares and going back up to 11mg each time, I am now getting slightly frustrated and quite depressed with the seemingly lack of improvement in my condition.

I had a further appointment with Rheumatolgist last week, and the only thing they changed was blood tests every 2 months instead of every month, it seems Methotrexate wil be part of my diet for a long time yet.

I gather adrenals start working again around 5-7mg of Pred. therefore I am going to ask the obvious;- how will I know if they are working at all, and how will I know if they are working properly???

[DorsetLady PMRGCAuk volunteer]

how will I know if they are working at all, and how will I know if they are working properly???

You are more likely to know if they aren’t working- fatigue is most common effect, but nausea, headaches, lightheadedness etc are all signs of adrenals struggling. .. and you won’t know they are working at full function for a long time after finishing Pred. It can take anything between 6-12 months after Pred for them to be back to 100%

Have a look at this link - all things adrenals -

healthunlocked.com/pmrgcauk...

..As for repeated flares- no 18 months isn’t long for PMR, and the fact that you flare at roughly the same dose each time, tells you that is the level you actually need for now…. It won’t always be, but is for now. Unfortunately the more times you flare, it seem to be increasingly more difficult to get things back under control…

I know it’s frustrating, but PMR will not be rushed, bullied nor cajoled- it’s takes its own time….. you and your doctors need to accept that fact, and go with the flow, not fight against the tide.

[Golf-1 in reply to DorsetLady]

I think you have answered my question thank you, I have fatigue by the bucket load, generally lack lustre and occasional light headedness- adrenals not working yet

[Miserere]

As far more experienced members will tell you ( hopefully PMRpro and DL will be along shortly) 7mg is the amount of Pred that you need for now and it you may need to stay at 7mg for a while before reducing again. How often are you reducing and by what amount? I have flared three times at 7mg, 6mg and 5.5mg and am currently back down at 6.5mg. I have learned to take it slowly and decrease by 0.5mg each time. I wait at each dose until I feel completley comfortable (this can be anything from 3 clear weeks at the new dose to nearer 6 weeks) before I reduce again. When I do I use DL's slow tapering regime - you can find this under tapering if you search for it - and, at present, this is working for me. I reduced fully to 6.5 mg a week ago (after 5 weeks tapering) and will stay at this dose for another two to three weeks or longer if necessary before reducing again by 0.5mg.

How can you tell if your adrenals are working? Again, there are people who are far more expert than me to tell you, but I believe at 7mg the dose is too high to test to see if your adrenals are waking up and, when they do, it can be a jerky journey. I don't think you can have an adrenal test until you are down at quite a low dose, certainly under 5mg.

Are you sure you are having flares? Sometimes you can feel the symptoms returning as soon as you drop the dose in which case it is more likely to be steroid withdrawal; or you can feel fatigued beyond sense, in which case it may be the adrenals trying to wake up but not managing it fully. As I understand it flares generally make themselves known once you've been at the new dose for a couple of weeks - this then brings a return of PMR symptoms.

As I say, I'm no expert but have learned the hard way to take things slowly and try to reduce slowly and consistently to suit my body. Believe me, I understand how frustrating this all is but the sooner you accept that the illness dictates and learn to take it one step at a time, the easier it will be. Good luck.

[Golf-1 in reply to Miserere]

Thank you for your helpful reply, my flares have been 4-5 weeks after reducing, I had been reducing by 1mg every 4 weeks but since getting beck to 7mg this time I am reducing by 1/2 intending to stay at 7mg for at least 4 weeks

[PMRpro Ambassador]

It is more that you feel them NOT working!

[Bcol]

Morning, reducing at 1.0mg every four weeks is very fast when you are getting below 10mg. I use a slightly modified DL taper and work on 0.5mg every five weeks, but nothing is set in stone, and even then I only start a new reduction when I'm happy all is going well. If you have to keep going back up because of flares you are more likely to have more difficulty getting things under control again. There is no point in trying to rush things however much you might want to. All in all I've had a pretty easy journey and three and a bit years in I'm just starting a taper to 1.0mg, so might be down to zero early 2024, might not, could be 2025 will just have to wait and see. Take care and hope things start to go well.p.s. I'm also lucky in not having any pressure from doctors to get off Pred ASAP. 🙂

[PMRpro Ambassador]

If you flared at a similar dose each time - that is your body telling you that you have got to your destination for now: the lowest effective dose. That will vary over time, usually falling as time goes on, but trying to force below that at any given time will just cause a return of symptoms. The more you try to get lower, and flare, the harder it becomes to reduce again.

[Golf-1 in reply to PMRpro]

Thank you, I have adjusted my dose for the next 4 weeks to 7.5mg and 7mg on alternate days instead of straight to 7mg every day, will let you know how I get on.

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

You’d maybe be better using one of the slower tapers rather than an alternating day one… some of us think that’s a harder on body.

..and both DSNS or mine take roughly a month or so -so no great difference in time.

[Golf-1 in reply to DorsetLady]

Thank you, I will have another look at your taper schedule and adjust accordingly

[Golf-1 in reply to DorsetLady]

I am not sure if I am reading your Taper correctly, I have changed Sunday of week 1 to 7.5 and Monday to 7.0 . all looks good for week 1 but the dose seems to increase over the next 5 weeks instead of going down? week 5 is showing 7.5 every day, I was expecting it to be 7.0 every day, am I doing something wrong?

[Golf-1 in reply to Golf-1]

OK, I have made it work by putting 7.0mg in Sunday and 7.5mg into Monday

[DorsetLady PMRGCAuk volunteer in reply to Golf-1]

yes you misread first time around...😏.. glad you've sussed it now...