irritable and achy reducing from 6 to 5.5 pred

[Bobbiegirl]

Dear fellow travellers, I have been reading all the recent posts and responses about reducing from 6mg to 5.5mg. I got down to 6mg 11 months ago but had surgery and shingles and eventually went back up to 10mg. Slowly got down to 6mg. GP told me to reduce to 5mg but I felt that was too much of a drop so tried 5.5 using dsns but gave up and went back to 6mg and now trying again. I am so achy (not sharp pain), uncomfortable to sit down for long, arms and shoulders ache all day and irritable doesn’t begin to cover it! But recent blood test gives CRP at 0.9 and ESR at 4 so there’s no inflammation/infection. I am keen to push on but this is no picnic and I assume my adrenals are having an effect. Sorry to ask such similar questions as others but as someone said, it is a different experience for all of us. Thank you and I wish you all well.

[PMRpro Ambassador]

"so there’s no inflammation/infection"

Doesn't follow - it often takes a long time for the liver to start producing the proteins that are measured as markers, and especially so when you are still on a reasonable dose of pred. However, adrenal insufficiency can also cause aches and pains - have you tried paracetamol? That often helps with those sort of problems and is always worth a try. Constant symptoms like that won't help irritability but again, adrenal insufficiency can also contribute to that.

Are you OK at 6mg? Does it start as soon as you try to taper? Slow it right down - 1 day new dose in a week and repeat it a few times, is that OK? Then add in a second day - and repeat a few times. Is your body catching up with the change?

It isn't slow when it works!!

[Bobbiegirl in reply to PMRpro]

Thank you so much for replying so quickly. I am ok at 6mg and the change happens almost as soon as I start to try just one day a week on 5.5. A few weeks ago when I first tried it happened like this but by the time I got to 5.5 and then 3 days on 6mg I was starting to get sharp pains in arms and I was waking in discomfort in the night (I don’t sleep well but don’t usually have my PMR type feelings at night) which was when I went back to 6mg. I will also be having surgery again in the next couple of months which again makes me wonder if I should stay at 6mg .

[PMRpro Ambassador in reply to Bobbiegirl]

Then I think you have your answer - no more reducing for the moment. Or at the very most, only 1 day new dose in a week again and again until you DON'T feel pains. When it starts that quickly it can often be pred withdrawal, your body protesting at the change in dose, rather than a flare due to inflammation which does usually take at least a few days. If it stays steady that would suggest not a flare - but it should improve over several weeks if it is steroid withdrawal.

Whether your adrenals would start to wake up at 6mg is questionable - it is still a dose that is high enough to suppress cortisol. But for some people they do and they get a normal synacthen test as well. It is a very individual thing - something a lot of doctors tend to forget.

[Bobbiegirl in reply to PMRpro]

Thank you , really appreciate the advice you have both given

[DorsetLady PMRGCAuk volunteer in reply to Bobbiegirl]

I definitely wouldn’t be thinking about tapering if you have more surgery on horizon.

[Bobbiegirl in reply to DorsetLady]

Thank you as always for your help and support

[DorsetLady PMRGCAuk volunteer]

Even though inflammation markers aren’t risen, don’t rule out your PMR grumbling… they can very often lag a long time behind symptoms.

Would say irritability could be reduction [I found that early days] although DSNS should alleviate that, so may a bit of that and adrenals.

As you are less than 2 years into PMR there really isn’t any point in pushing on… it could have a lot longer to go.

Maybe back to 6mg [if you felt okay there]- or 7mg might be wiser…. Stay put for a couple of months let adrenals catch up - even though some time ago you may well still have a hangover from surgery and shingles., so give yourself some leeway.

[Bobbiegirl in reply to DorsetLady]

Thank you too Dorset Lady. So at 6mg my adrenals should be starting to work?

[DorsetLady PMRGCAuk volunteer in reply to Bobbiegirl]

Well they certainly need to be thinking about it - how quickly or slowly they’ll get there no-one can say-

healthunlocked.com/pmrgcauk...

[Daffodilia]

I have found it hard to reduce to 5.5 from 6 - will try the one day a week suggestion below - GP suggested Spring (when clocks go forward) and I usually try September too but not this year as husband recovering from open heart surgery and busy caring for him

[Bobbiegirl in reply to Daffodilia]

My last GP (we moved earlier this year and new GP not as interested!) said that it is harder to reduce steroids during the winter months and to take it slow. There may be something in that and you have your husband to care for too. We are all so keen to get off Pred (well I know I am) but also just want to be “better”! Take care 🙂

[PMRpro Ambassador in reply to Bobbiegirl]

There are a couple of rheumies who say the same and not to reduce until spring!

[DorsetLady PMRGCAuk volunteer in reply to Bobbiegirl]

The body has to work harder in cold climate -so most things become more difficult.

[PMRnewbie2017]

Ditto to all the advice above, but to reassure you, I've had PMR since Nov 2017. Now at 2.5mg.....again! Getting below 5mg proved very challenging and I also have a very short fuse during the first three weeks of a taper. It's got to the stage now that i warn my OH that I'm beginning a new taper as I have been known to get quite irrational which is not like me at all. Like all things, it passes.