PMRGCAuk
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DSNS method - quick query

Hi - I'm really seconding guessing my appointment with my rheummy this afternoon, where we will discuss coming off prednisolone. I have read all about the DSNS method and I'm guessing the rheumatologist won't be aware of it. Therefore - my question is - is this the recommended method even if you haven't been on prednisolone for very long (I started in July 2016, was down to 5mg by November 2016 and have had no problems since then - still on 5mg today). Or is it possible to wean off more quickly in my situation? Just thought it would be good to have an answer before I get in there.

Many Thanks, Sue

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Hi,

You may be one of those people who can do it more quickly than others, but 5mg can be a sticking point for many. However, as you've been on it for almost 5 months then a quicker reduction may be okay.

Depending on how you feel, you don't have to do the full DSNS taper - it was devised originally for patients who had great difficulty in reducing any other way.

You can try many slower reductions, from one that takes a couple of weeks to get from one dose to the next, to one that takes 4 weeks or the full DSNS. It's what suits you really.

The only thing I would say is because you've only been on Pred for less than a year, there is every possibility that your PMR is still active, so don't reduce too quickly.

5mg may be controlling things nicely, but 4mg may not! Trouble is you don't know until you try, so that's another reason to try a slower taper - either timewise, or by 0.5mg rather than a full mg.

Good luck this afternoon.

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Thank you for such a quick and helpful reply. I understand what you are saying about the PMR being active - the only thing is, my Rheumatologist doesn't think I have PMR but have reactive arthritis, caused by some treatment I had for Bladder Cancer. As I will no longer be having this treatment, I think he will say to stop the prednisolone fairly quickly (but I am second guessing). So I suppose, my main concern will be looking out for withdrawal symptoms. Unless I do have PMR after all ....... ;-)

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Okay,

Please let us know the outcome.

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My Doctor believes since my blood markers are normal I should try reducing old dose, new dose for 10 days and then new dose for 10 days. I told her I was trying your method and what was the difference if I took 6 more days to do it? She says she wants me to get to 10 quicker and we could discuss a slower method at that time. I asked about the rush and she cited damage of Pred and my severe osteoporosis. I had a flare going from 15 to 14 then went to 16 for 3 weeks. Friday I will be finished traveling and the holidays don’t impact my life. Chanukah is quite laid back!

Your thoughts, please.

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She wasn't listening was she? Ask her what about having to go back to a higher dose to manage a flare. You have to get to 10mg first.

Show her this

practicalpainmanagement.com...

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Your ‘normal” blood markers are only showing the level of Pred you’re on at the moment is correct, even 1mg less may prove otherwise. That’s another thing the doctors don’t seem “to get”.

As PMRpro says when you have a flare you have to take extra Pred, so why not prevent that in the first place by tapering a little more slowly? Another thing they don’t get!

I guess it’s her call, but for the sake of 6 days I’d say she being a bit intransigent.

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Just because you are fine at 5mg doesn't mean you will still be fine at 2mg - or even 3 or 4. And I have no doubt he'll have a reason for deciding it is reactive arthritis - though how he can tell...

But it is said it takes about a month for every month you were on pred to wean off successfully. If you are fine at 5mg then it suggests your adrenal glands are already functioning to some extent or you would be fatigued if nothing else.

I wouldn't agree to trying significantly more than 1mg per month. And the DSNS, starting at 1 day new, 4 days old, takes a month.

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Thanks to both PMRPro and Dorset Lady. As I suspected the Rheumatologist said, all is good and I can now stop taking prednisolone. I said " you don't mean just stop though, do you? Don't I need to stop gradually?" "No" he said, "you're on such a low dose, it will be fine" I did argue a little further with him, regarding withdrawal symptoms and pains returning. He then said i could maybe take 5mg one day and none the next for a couple of weeks. He's such a lovely man though :-) - I just decided I would work on my GP instead! Saw the GP just now and he has agreed to stop them gradually - he is suggesting 4mg for 2 weeks, 3 for 2 weeks etc and a review in 8 weeks. However, I do have enough 5mg left to at least do the first reduction using the DSNS method. So I will do that and see how that goes. If I encounter any problems whatsoever, I will be straight back to him.

I did smile to myself (must be feeling good!!) when the Rheumatologist dictated his letter to the GP stating that he suggests we stop the Prednisolone immediately and "we will see what happens". He wants to see me in 6 months. Rest assured I will be back to him before 6 months if I return to the pains I had before I began on Pred.

Once again, thank you to all on this forum. Your dedication to helping others is very admirable. I will let you know how I get on.

Regards to all

Sue

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We will see what happens? Adrenal crisis anyone?

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No thanks, I'm trying to cut-down ;-D

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Just for starters!

The more I read about Rheumies the gladder I am I wasn’t treated by one.

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