Flare Up after 12 months (and I was doing so well)

[Inertia]

Firstly, can I thank everyone for the great wisdom and advice gained through experience, shown by the writers on this site. I would just like to get a confirmation on my progress on PMR and a recent set back.

I was diagnosed in April 2018 following a sudden onset. Starting at 15mg I have moved progressively in stages to 4.0/4.5 in March 2019. All fine without any recurrence of any symptoms whatsoever or reaction to Pred. That is until a week ago when all the symptoms returned in 24hrs.

I immediately upped my dosage to 5.5 and then - having looked back through previous saved posts on this site - upped further to 8mg. I am 90% free of symptoms once again and this improves each day. I plan to carry on at this raised dose for a further 3 or 4 days and then return to 5.5 mg ie 1mg above where I left off.

Longer term I will maintain at 5mg for 3 months - to give the adrenal system time to stabilise and return to full function - before attempting a DSNS taper. Any comments advice on this plan would be really much appreciated, especially anything rooted - in personal experience or evidence based research.

[PMRpro Ambassador]

Sounds good to me - to get to under 5mg in less than a year is superb. You have found what is too low - it is difficult for me to know how fast you were reducing but remember it is possible that you crossed the line a while back and the seeping in of the inflammation has been very slow.

[Inertia in reply to PMRpro]

The journey headlands were:

Mid April - 15mg

June - 12.5mg

July - 10

August -10

Sept - 9

Oct - 7.5

Nov - 6 / 5.5

Dec - 5.5/ 5.0

Jan '19 - 5..0/4.5

Feb - 4.5

Mar - 4.5 / 4.0.

Its just the last week moving to 4.0 that I came unstuck. I should add I'm very fit, walk 2-3 miles most days and have no other health problems.

[PMRpro Ambassador in reply to Inertia]

Textbook - and your body is saying not below 5mg yet.

[Inertia in reply to PMRpro]

Yes, textbook thanks to great advice here.

I was aiming to stay at 5.5/5.0 for a while but wondered if there is anything you could point to from an evidence /research base that might help on the sort of duration. (I remember the Bristol research pointing to a longer stay at 10mg) Also is there any useful tests that I might reasonably ask my helpful GP to commission to verify my body's resumption of adequate cortisol levels?

[PMRpro Ambassador in reply to Inertia]

You are successfully well past the 10mg reasoning. Rod Hughes in Chertsey likes to keep people at the 5mg level for up to 9 months - it seems to allow for better tapering to the end, low enough to prod the adrenal function, high enough to feel well. I'd say the best approach now is to try 1/2mg at a time but wait a couple of months first - often just doing that will let you get down another couple of steps. Sometimes it takes 3 or 4 attempts to get over a hurdle. Just be patient and don't try to force it. As long as you feel well I wouldn't worry about asking for a synacthen test until down to 3mg - that is plenty low enough to get a meaningful result, above that isn't really.

[Charlie1boy]

Hi,

Yes - you have done well to get down to 4/4.5 mg in the time since you were diagnosed. My PMR certainly did not let me reduce at that pace. I am now at 2.5mg after over four years, but at least without a flare.

I would not presume to add to what PMRpro has written ( she is the one whose advice I have always followed! ). The only piece of advice I would give is that PMR is very good indeed at making a mockery of the best laid tapering plans, and it does get more tricky at the lower doses.

You might well plan to stay at a level for a given time, but, if the PMR is still lingering, then it much better to listen to your own body. Also, I have found that the PMR fluctuates. You feel fine for a period of time, then, without any change of pred dose, it can make itself felt a bit.

Good luck, and try not to be too impatient!

Paddy