Down the rabbit hole.....

[hopeful-1]

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Background & PMR Question

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I have now been on Pred for PMR for 6 months: 6 weeks at 15mg, 4 weeks at 12.5mg, 4 weeks at 10mg, 52 days via DSNS dropping form 10 to 9mg, and am now on the last couple of weeks of 52 days via DSNS dropping from 9 to 8mg.

The main residual symptom of my PMR has been stamina, lasting power throughout the day and evening, which has continued to steadily improve.

The only other wrinkle has been an increased sensitivity to light, plus migraine in the early stages of the drops in dosage, I guess due to reduced Pred dosage.

However my stamina has now reached about 70% of what it was, and light sensitivity and migraines have been absent for the last month, so I'm wondering whether my current bout of PMR has run a good portion of it's course?

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7mg Pred Reduction Question

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I want to take the most effective choice of Pred dosage reduction from now on, where I will be reducing down from 8mg.

I am aware that the Adrenal gland comes into play gradually from about this point, and needs to be called on as slowly as possible in order to avoid upset.

I am also aware of advice on not reducing GT 10% at a time, of the possibility of .5mg drops, and of sticking to the current dose for at least a couple of months, all to avoid Pred withdrawal effects and resurgent PMR flares.

Against this however is the DSNS approach which I am following with up till now 1mg drops, and where each new dosage is gradually introduced over 52 days.

I have also till now been fortunate in the degree of effect my reduction has caused.

My approach has been to steer a course that I think is attainable, but be prepared to take remedial action when encountering problems, which in the case of adrenal/Pred withdrawal/PMR flares problems would be to step back to the previous dosage for a certain (suck it and see) time.

I would be grateful if anyone could offer suggestions on my approach, and give their opinion on whether my DSNS reduction plan deals with the 10%/.5mg/same dose for a couple of month concerns?

Thank's.

[DorsetLady PMRGCAuk volunteer]

Hi hopeful-1,

Would say that if your migraines and light sensitivity have gone then that's good - although with the DSNS taper you shouldn't really be getting any adverse effects, that's the idea of it.

As you say, 7mg can be a tricky level for lots of people, so would suggest that on your next taper you start going 0.5mg a time and continue to use the DSNS regime. It seems to be working well for you, so continue with it.

Just remember though the lower you get in dose, the higher each reduction becomes in percentage terms, so although you may feel you are nearing the end of your PMR journey you still need to be careful. Don't plough on regardless, don't spoil the good work you've already done.

[PMRpro Ambassador]

"I'm wondering whether my current bout of PMR has run a good portion of it's course?"

There really isn't anyway of knowing - PMR has gone when you can get to zero pred without a return of symptoms. I think the activity cycles and you do tend to get periods where you feel better or worse. Whether the autoimmune bit has gone altogether is another question.

I'd say carry on with DSNS as you have been. If your adrenal glands are sluggish then you will probably tell by increasing fatigue - people often seem surprised they feel MORE tired as they reduce.

It is also possible that if you are going to need a low maintenance dose at the end, you will be able to reduce really easily initially, being a long way from your objective. Don't get lulled into a false sense of security.

[TooSore in reply to PMRpro]

I always forget about the "activity cycles" part of this disease and tend to get upset when I go from a period of feeling relatively healthy to a spell of feeling poorly. I need to remember it's all part of the storm and not let it get to me.

[hopeful-1]

Does anyone know what drops in dosage the originator of the DSNS method of tapering used, i.e. was it 1mg till zero or 1mg till 5mg then .5mg or what?

Thank's.

[PMRpro Ambassador in reply to hopeful-1]

I envisaged 1mg as being the basic sized reduction - as you can see if you read it carefully: "My reductions are VERY slow. I use the following pattern to reduce each 1mg".

However - there are patients who can't even manage 1mg drops and the whole idea was to improve on the smallest sized drop it is obvious you can use. Most patients are able to get 1mg tablets. If they are unable to manage 1mg at a time they can cut the tablets to do 0.5mg at a time. But even that is a lot overnight for some people, especially below 5mg/day where that is now 10% of the current dose and increasing.

Everyone is different and it is up to you to experiment a bit - try the smallest OBVIOUS dose change, if that doesn't work, try to make it smaller somehow.