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[Sorop]

Hi everyone I have posted here before and had helpful advice, I reduced from 60mg last year and managed to get to 15mg but when going down to 12 1/2 mg had a flare and had to be put up to 40 mg . I know I have to go slow can anyone say if I have to go slow even going from the higher doses? I am now on 28mg and have been advised by rheumy to reduce by 2mg a week but went from 30 to 28 an then 26 as advised but now feel dreadful. Have put myself back up to 28 for the last few days but no change yet. Feeling so down after having done so well reducing first time round but now struggling to come down. I really need to get off the high dose as side effects already diabetes, shingles and cataracts. Help.

[HeronNS]

Reducing by 2 mg when you are at this level should be okay as it's still not more than 10% of the dose. But it looks like you are a candidate for one of the slow taper methods as you don't do well with dropping the dose all at once. Also I believe you need longer at each lower dose. Two mg per week is actually really fast. Have you looked at dead slow nearly stop (DSNS)?

healthunlocked.com/pmrgcauk...

I gather you must have GCA as well as PMR as you were started at 60? Obviously if you have GCA symptoms you mustn't reduce any more, you must get those symptoms under control. If it's PMR I imagine staying for several weeks at the dose where you last felt well and then starting a much slower taper could be effective.

[Sorop in reply to HeronNS]

Thank you heronNS for the quick reply, yes I have GCA and PMR. I wanted to check if DSNS was appropriate at the higher dose as the symptoms I am experiencing are more like PMR than the GCA , heavy dead legs, aches in shoulders and arms and such fatigue and spaced out sensation. It is so difficult trying to distinguish between withdrawal symptoms and flare symptoms. I will certainly stay at a given dose for longer as 2mg a week is obviously not long enough for me.

[PMRpro Ambassador in reply to Sorop]

I don't think a given dose for introducing DSNS matters - some people can even drop 5mg at a time and are fine. Others struggle with 1mg at a time. It is a question of finding out what works for YOU. The idea of the DSNS was to remove the problem of withdrawal symptoms - you challenge your body with the new dose only one day at a time. What you feel on those days is almost certainly withdrawal. I usually find my body protests for the first 3 times - and then it gives in and accepts.

[PMRpro Ambassador]

Personally I think weekly reductions are far too risky - 2mg every 2 weeks MIGHT work but every week isn't letting your body settle down at all. Heron has given you the link for a slow reduction that works. And most people can reduce more than 1mg at a time using it.

Shingles isn't necessarily the pred, you can help manage the diabetes problem by cutting carbs and cataracts are cataracts! They won't go away because you reduce the pred dose, you get rid of them with surgery. And trying to rush off the pred will, in the end, almost certainly result in you taking more than if you edged down slowly because then you reduce the risk of flares.

[Sorop in reply to PMRpro]

Thank you PMRpro as usual sound reassuring advice. I have looked at the link and work out a plan that is slower and try to look at the long term rather than week by week. I try to comply with the suggestions of the rheumatologist but it not working for me she did add if possible. I need to listen to people on this site who have are on the same journey.

[DorsetLady PMRGCAuk volunteer]

Hi,

You can use a slow taper at any dose, it what suits you that matters. I posted this a couple of days ago

healthunlocked.com/pmrgcauk...

[Sorop in reply to DorsetLady]

Thank you DorsetLady I have downloaded it and will try it at the next reduction. Feeling more positive about reducing now.

[HeronNS in reply to Sorop]

I'm venturing on tapering down from an increase over my lowest dose, but as I've been percentage-wise well above that dose for several weeks, not just a few days, I'm going to try Tortoise not Hare and see if it works, as an experiment and a change from DSNS. 😉 I don't know if that plan is posted somewhere. I got it by email from PMRGCAuk.

[PMRpro Ambassador in reply to HeronNS]

I've never seen it posted - just from the charity. In fact - just from PMRGCA NE (the northeast charity as opposed to the national one).

[HeronNS in reply to PMRpro]

Looked at the paper, yes, from NE.