how to begin a slow reduction from 20 mg?

[Tiredcat]

Following my recent post about the synacthen test I had done, I got lots of good advice and I concluded that the best idea is to go on a slow reduction from here on. Now I'm looking for advice on how to proceed with that.

I have reduced from 60 mg (after a GCA scare) at 5 mg per week, and am now at 20 mg. I am due to see my doctor again soon . However I am reluctant to see her unarmed with a good plan of my own, as I think she set up trouble for me by reducing me from an initial dose of 15 mg (for PMR, before the GCA scare) to 10 mgs after a month. That's when the terrible fatigue set in.Too drastic a reduction, too quickly, it seems now. I've had no pain since the first dose of prednisone. The fatigue has varied a little but really has been pretty much the same on anything from 10 mg to 60 mg.

The DSNS tapering plans sound very effective, but would you start on that at 20 mg, or go in bigger jumps to 15mg perhaps, and then more slowly? As I say,I've been going down at 5mg per week until now.

[SnazzyD]

I did 1mg per 2 weeks, but was on 18mg for 5 weeks due to a holiday which I think my body was grateful for because withdrawal wasn’t great. Then it was 0.5mg (same difference but smaller step) every week but at each whole mg dropped I often stayed on an extra week. From 10mg I slowed it right down. It does depend on the person and how it goes. Don’t underestimate how bad withdrawal can make you feel but don’t drop until you feel it has passed. I have also tried as hard as possible to rest and didn’t try to live normal life as I knew it before diagnosis.

[Tiredcat in reply to SnazzyD]

Thanks SnazzyD. That gives me some idea of how to go on.

The thing with me is, no matter what dose I'm on, I still feel pretty much the same which is exhausted. So I can't tell if I have adjusted to a new dose or not.

It's nearly 10 pm here so I won't reply to anyone else until the morning.

I do so appreciate your help.

[SnazzyD in reply to Tiredcat]

Ah, I didn’t stop feeling exhausted all the time until 10mg and below. The symptoms I waited for was even more exhaustion than usual and fluey type aches.

[Tiredcat in reply to SnazzyD]

I am so pleased to hear of someone else who really gets it about the exhaustion. When I think about it, yes, some days are worse than others, so I will know if a reduction hasn't worked. It's great to hear it improved at 10 mg, so there is light at the end of the tunnel after all!

[SnazzyD in reply to Tiredcat]

Keep an open mind because below 10mg it can get a bit worse for a bit when it comes to the point of the adrenal glands needing to work. You can’t hurry that bit either, especially if you start to push the lower limits of the Pred you need for the condition. Docs gave the impression that the clouds would part after 15mg and I would “feel human” again as they put it. Not sure where they got that from.

[Tiredcat in reply to SnazzyD]

Thanks, the clouds parting bit gave me a chuckle!

[jinasc]

I would stick to the 10% rule till you get to 10mg. But follow the pattern of DSNS, this gives your body time to adjust to the lower dose and if you feel it has not worked, just go back quickly to where you were and then try again perhaps a week later. It is not a race, it is to keep slowly dropping till the PMR goes into remission..............you cannot make it go, it has a mind of its own, comes when it wants and goes when it wants.

Do not let your GP yo-yo..............slow and steady........not a roller-coaster.

[Tiredcat in reply to jinasc]

Thanks for your reply jinasc. It's so good to have everyone's advice, What a difference it makes to know I'll have the backing of all you people's experience when I talk to the GP.

[Theziggy]

There are GCA tapering plans which you can adapt to suit your needs here steroidtaper.azurewebsites.net

[Tiredcat in reply to Theziggy]

This link is great, thanks Theziggy. Interesting to see they include DSNS and Dorset Lady's slow taper. Recognition and validation of the experience and seriousness on this forum.

[DorsetLady PMRGCAuk volunteer]

Hi,

Some can manage 20-17.5-15mg relatively easily, but I think that very often depends how their tapering has gone before. If it’s been straightforward then it’s probably achievable - however yours hasn’t- so I wouldn’t risk it.

Personally I would try 1mg tapering on a monthly basis (or 0.5mg every 2 weeks - as SnazzyD says same difference/smaller steps).

If you want to try 1mg tapers this may help - but most don’t need to employ a slower taper until lower doses - really to have to find what suits you best - but don’t let doctor rush you. Your body has had enough turmoil recently - and I doubt that’s helped the fatigue.

healthunlocked.com/pmrgcauk...

[Tiredcat in reply to DorsetLady]

Thanks for your reply Dorset Lady. I always appreciate your knowledgeable input.

[HeronNS]

Definitely not more 5 mg drops! In your position I might drop by 1 mg every week rather than 2.5 for a fortnight (if that's what the doctor suggests). And once you get to 10, if not before, a very slow taper where you remain on each dose at least a month, sometimes longer, before proceeding.

Your fatigue should be investigated, low iron one possible cause. At current dose it's not going to be adrenal insufficiency.

[Tiredcat in reply to HeronNS]

Yes, your advice sounds sensible HeronNS. Thanks for your input. I think I have probably been checked for iron, but will ask the GP when I see her. She is away for a few weeks, which is one reason why I wanted to get a clear idea for myself of how to go on.

[Cross-stitcher]

Dx of PMR in April 2019. GP said 15mg Pred for 4 weeks. All symptom were well controlled during that time. I then dropped to 12.5mg for 3 weeks, and then to 11.25mg (by splitting a 2.5mg tablet) and finally to 10mg where I stayed for a further 3 weeks. As I had no further pain and felt well, I then started a DSNS taper adapted slightly to reduce 0.5mg every 3 weeks rather than 1mg every 5-6 weeks. So far, so good - no flares or withdrawal pains. My lovely OH keeps telling me not to rush - it's hard when you're feeling well not to try starting the next taper too soon - and I know he's right. Slow and steady wins this race !!

[Tiredcat in reply to Cross-stitcher]

Yours sounds like a dream run, Cross- stitcher. i was diagnosed in April so if all had gone well I would be where you are.

[cranberryt]

How much were your previous drops? I wouldn’t drop faster than 2.5 until you reach 10 and then by 1 or 0.5. But if you were already dropping slower you may need to drop by less or use the slower taper method of new dose/old dose.

[Tiredcat in reply to cranberryt]

My drops from 60mg have been at 5mg a week, now I am at 20mg. It's been hard to tell if this reduction plan was ok or not,most of the time I have been very fatigued, walking with difficulty, needing at least one nap a day and some days just stuck on the sofa all day. I think things are improving now a bit though, it's so gradual as to be almost imperceptible.

I haven't had any pain since my first dose of Prednisone.

[cranberryt in reply to Tiredcat]

It sounds like you are doing as well as can be expected. I am new to all this but learning that even though my pain is controlled most days I still have a disease that makes me tired, often at the drop of a hat. The articles PMRpro posted below are really helpful. I just read through them and it gave me a lot to think about with regards to fatigue. Your taper seems to have gone well so far but I would maybe try 2.5 drops instead of 5 drops until you get to 10. And if that seems like too much then go even slower.

[jinasc]

GCA only moi ( 5 years and 8 in remission so far).

I was very lucky with my Rheumy and GP.................never more than 10% at a time and sometimes no drop for two months till I got to 20mg and then 1 mg a month, long before we met Ragnar and then two patient power drop plans devised.

Now we have more and if one does not suit another will and always listen to your body, it does tell you what it needs.

[Tiredcat in reply to jinasc]

Thanks for your reply jinasc. Yes, I am trying to learn to read the different signals the body gives me.

[PMRpro Ambassador]

You can use DSNS to reduce in any size step and it still will take only a month for each if you start at about 1 day new dose, 4 days old, just be gentler on the body. So from 20mg you could use it to do 17.5 and 15mg in 2.5 steps. Below 15mg I would not try bigger steps than 1mg at a time although if your end dose is well below 10mg it will be easier. The advantage of small steps is that you notice the effect less and identify the right dose for your PMR at the moment more accurately - it varies over time.

And if you are so exhausted - read this:

healthunlocked.com/pmrgcauk......

You may THINK you aren't doing much but you may be doing it all at once instead of bit by bit.

[cranberryt in reply to PMRpro]

Thank you for these articles. Very helpful.

[Cyclegirl54]

Hi there, I’ve just recently completed 4 weeks at 20 mg due to a flare. Now done 7 days at 19 mg and feeling ok( hurrah for a change). I will stay at 19 mg for at least another 2 weeks then go to 18 mg (all being well) for a similar length of time . Have a rheumi appointment on the 4th Sept and hoping for a positive experience!

[Tiredcat in reply to Cyclegirl54]

thanks for that Cyclegirl54. I concluded going to 19mg was the best to start with, have been doing that for a few days now with things going Ok.

[Cyclegirl54 in reply to Tiredcat]

All the best🌸