Stay on 10mg Pred for 1 year? Thoughts?

[Insight329]

62 yr old female, almost finished from 15-12.5 mg, Diagnosed GCA May, 2017, USA

researchgate.net/publicatio...

I’m about done with the jump from 15mg to 12.5 mg Pred and so far I’m feeling good. My Rheumy said once I get to 10, we’ll slow down. (Reminder, my Rheumy is one of the good ones, has listened to me before and said we’re a team.) i still have to get from 12.5 to 10 so this question is a bit premature.

The tapering schedule proposed in the above article has me intrigued at staying at 10mg for a year. Do the authors suggest this so that the patient sits at a dosage that is ‘safe and without fear of flares’ while the immune system continues to work on the underlying disease?

What are your thoughts on this? Pros? Cons? I have to admit that I think I like the idea - but I also admit that some of that could be driven by the fear of flares. Is 10 mg a low enough dose to be considered non-threatening? I wanted to get all of your thoughts before I see doc once I get close to 10mg.

Thanks in advance

[DorsetLady PMRGCAuk volunteer]

Hi,

I think the views behind the one year at 10mg is as much to assist the adrenal glands to start their work again, as well as addressing the illness.

If you get down to 10mg and have no flare within the first 4 weeks at that level, then I can’t see a reason why you should flare after that time - unless you are under extreme stress.

Not sure there’s any evidence to prove whether staying at 10mg for a year and then proceeding as suggested in paper, or whether using a slower taper, say 0.5mg per month is the most beneficial.

I thinks it’s a matter of - you pays your money and takes your choice!

[Insight329 in reply to DorsetLady]

Thanks, DL. I’d forgotten about the adrenal gland connection. Much to ponder. And my doc may have strong views on the subject.

[Charlie1boy]

Hi,

I think that, as DorsetLady says "you pays your money, and you takes your choice". Seems to me that PMR and GCA manifest themselves so very differently in each of us.

I've had PMR since Dec 2014. Started at 30mg, now at 5.5mg. I began 2017 at 6mg, and 2018 at 6mg! Didn't intend to stay at six for a year, and, as it happens, I did fluctuate from 4.5mg to 7mg over the course of 2017. However, if you'd said to me in January 2017, you're going to stay at 6 for a full year, then I don't think I would have accepted that.

What we all need to remember is that these illnesses have a mind of their own, and will leave our bodies (hopefully) only when they are ready.

Good luck whatever you decide, and always remember "slowly does it!".

Paddy

[PMRpro Ambassador]

I don't think they have ever said WHY they think it works better - it reduces the rate of flares from the 3 in 5 found with most suggested reduction schemes to 1 in 5 with theirs. I think it is just that they are being patient and waiting past the period where most schemes are into the dodgy area in the early stages of PMR. I think that for most patients it is most active in the first 18 months and then slowly fades away. Logically you therefore need more pred in that period. So this reduction plan is sticking at a dose that will work for most people - it has even worked for me almost the entire time - before setting off on the last 10mg where they ALSO only reduce 1mg at a time. And even then, they warn it must be tailored for the individual patient. So I don't think they are expecting a straight line to zero for everyone.

I don't think the 10mg bit is anything to do with the adrenal gland function either - at 10mg you are still above the dose where they have to kick in and start to top up the corticosteroid level. It is a low dose, only slightly above physiological, and a very typical PMR dose so probably comes under the coverage of this paper:

medpagetoday.com/rheumatolo...

Personally I see no reason for sticking at 10mg for a whole year PROVIDING you only reduce 1mg at a time at most, use one of the slow reduction approaches AND remain very aware of what is going on so that if a niggle appears you stick and wait to see what is happening, is it a flare, before continuing.

The DSNS approach has consistently helped people to get to far lower doses than they had managed before - which was the idea when it was worked out and tweaked repeatedly. At first we said "from 5mg", then we said "from 10mg" and then realised there were people who struggled with the size of reduction at even higher doses. The main concept of the very slow approaches is to distinguish between steroid withdrawal pain and a beginning flare. They can be so similar that people panic at steroid withdrawal pain and go back to a higher dose, many doctors panic more than patients and send them back to the start which is rarely necessary. On the other hand, if you assume everything is steroid withdrawal and give it 2 weeks you may be well established in a flare and really struggle to get it under control - and so you HAVE to go back to the start.

If you creep down the doses you become aware very quickly which is which. I feel "strange" for the first 3 or 4 days I try the single day of new dose then my body realises it is fine and stops complaining. That tells me that it is steroid withdrawal - if it were too low a dose it wouldn't stop like that. And that is why I start with 1 day new, 6 days old. It takes that long for me to be sure it is withdrawal. Others are nowhere near so sensitive and can start sooner or use faster versions of a graded reduction.

[Insight329]

Thank you! I think I’ve got some psychological fear of going below 10mg - it brings to mind a carnival funhouse with trap doors, mirrors that change perception, and halls that lead to deadends.

After I typed that, I sat and tried to ‘process’ that image and fear. Totally generated by my fear of flares. I think I’m going to have to do some self-talk. And give myself more credit in that I’m more informed and aware than the ‘scaredy-cat’ in me thinks I am. The first few days of this last reduction, I felt ‘flu-ish’, but I told myself ‘wait it out —I think this may be steroid reduction symptoms’, which it was as I’m fine now. (Thanks to this forum for teaching me about them so I didn’t jump to the conclusion that I was starting a flare. Also, thank you to everyone that worked on reduction plans that enable us to lower without flares!!!)

Yep, I’ve got some work to do in the pyschological department. So appreciate your knowledge and opinion — and for the use of your couch.

[PMRpro Ambassador in reply to Insight329]

Always there...

[altywhite]

Hi, I was told to stay on 10mg for a year after the rheumatologist 'scoffed' at my dose of 9.5mg!! That was February last year. I did actually end up going higher than 10mg as I had a flare but was soon back at the 10. I haven't actually followed instruction as I had a period of feeling really well mid year and very slowly I have come down to 8mg. I have just started trying to get to 7.5mg but it's not going well. I may stay on 8 until I have my next appointment next month. ( I may not tell them I am on 8mg either!!! ) Good luck.

[Insight329 in reply to altywhite]

Thanks, altywhite! I have no idea if I'll pitch it or not. Still am processing all of that fear - darn it!!!

I think getting down to 7.5 you'd be getting close to the adrenal gland problem. Isn't that about the time they start kicking back in?

[PMRpro Ambassador in reply to Insight329]

Sort of - depends on the person and how much they absorb of their dose. The ones who only absorb about half of their pred may have problems about 12mg or even sooner...

[Insight329 in reply to PMRpro]

Wow -- I had no idea about those that absorbed half would have problems earlier. I swear, I learn something new every time I'm here.

[PMRpro Ambassador in reply to Insight329]

Pure logic ...

[altywhite in reply to Insight329]

Hi again...7.5 seems to be the 'magical' number doesn't it? Just read PMRpro's comments about those who only absorb half of their dose...I never knew that. I just feel fluish and 'odd' if I reduce too quickly and I am soooooo tired!!! My slow method is REALLY slow.so I'll keep going for a while .