To taper or not to taper?

[Hedgehogfriend]

Hi everyone, I am currently tapering Prednisolone and if I take it slowly I have not had too many problems. But now I'm down to 4.5mg and really struggling to get to 4mg. I've tried one dose of 4mg, then six days of 4.5mg. the next week two days of 4mg and the rest on 4.5mg. But I've started feeling ill again - pain in shoulders, horrible brain fog. Feels like I'm going backwards! Should I just stay on 4.5mg for longer or persist in a gradual taper to 4mg? I feel like I might have reached my plateau on 4.5mg but obviously I do want to get off steroids if I can. Any advice from the wise and wonderful people on this forum? Thank you and keep well

[SnazzyD]

As a rule of thumb, never reduce if you have PMR symptoms. The point of reducing your Pred is mainly to find the lowest dose that holds your inflammation so that you aren’t taking more Pred than you need. One day you get to zero, but for now it sounds like you have got below your minimum dose and need to go up to where you were ok and wait a couple of weeks at least. I’m sure more advice on that part will come so sit tight.

You may also be starting to feel the effects of low cortisol as well because 4.5 mg is not enough for the body to use to deal with life in general. Until your adrenal glands are told to work by the body they won’t make enough cortisol to top up the Pred. This can make you feel tired, weak and foggy. Do read about adrenal function from our FAQ’s. Low cortisol can make you feel fluey achey but I never got specific pain but I only had GCA not PMR. If the pain feels like PMR and you haven’t just swept the yard or some other job, the first paragraph stands.

healthunlocked.com/pmrgcauk...

[Hedgehogfriend in reply to SnazzyD]

Thank you, much appreciated x

[DorsetLady PMRGCAuk volunteer]

No point in trying to push through if you feel rubbish - just sit at current dose [4.5mg] for a month or so.

It’s probably a combination of too low a dose and adrenals struggling… so for both reason just give yourself a break, and give adrenals a chance to catch up.

See this re adrenals -

healthunlocked.com/pmrgcauk...

[Hedgehogfriend in reply to DorsetLady]

Thank you for your helpful and reassuring reply, I'll stick to 4.5 until I settle down again. What a complicated journey this is! x

[DorsetLady PMRGCAuk volunteer in reply to Hedgehogfriend]

Yep it is - and not helped when some doctors don’t ‘get it’ . 😊

[SnazzyD in reply to Hedgehogfriend]

It’s great on paper!

[PMRpro Ambassador]

You can't get off pred - however much you want to - until the PMR will let you. You aren't heading relentlessly to zero at present - you are looking for the lowest effective dose that manages the symptoms AT THE MOMENT. You will get lower - just not yet. And at this stage it DOES get a bit complicated because you must satisfy the PMR's needs AND persuade your adrenal function to wake up - which it has a habit of taking its time doing.

[Hedgehogfriend in reply to PMRpro]

Thank you, these responses are all very encouraging and I feel more in control x

[PMRpro Ambassador in reply to Hedgehogfriend]

That's what we hope you feel when you understand better.

[waltztherapy in reply to Hedgehogfriend]

Thankyou for your enquiry hedgehogfriend, and all the caring replies! I feel I'm in a similar position, only at 5mg, where I've been for two months. Will sit tight till I feel really ready to try dropping to 4.5. Don't know how I will know when this might be. Agree, it's so complicated and a bit scary.Thanks and good luck all. X

[Mimma]

it is around this level that it becomes more challenging to taper. Don’t rush stay on 4.5 for two weeks then try tapering to 4 mg to 2 days and 4.5 for two days. Do this for a week - then 4 mg for 3 days and 2 days of 4.5 for a week. Then 4 mg for 5 days and 2 days of 4.5 for a week followed by 4 mg all week. If you feel okay by then continue dropping .5 mg every week. Hope this helps.

[herdysheep]

After more years than I want remember, I did get down to 3.5mg without adrenal issues, but then had a flare! After 18mths or so I have got to 4 with all sorts of adrenal issues. So it's a balancing act all the time. Slowly as you can for the adrenals but enough for the inflammation. Whoever controls the balance scales needs to be a bit more humane and tell us what we need😂

[Shiv14]

The 4.5 mark is the exact point where I had my biggest struggle. I just couldn’t seem to make any progress no matter how slow until one day I was doing something and it suddenly dawned on me I actually feel great today. First time in three years. It did not last but it was the point when I knew that yes this will pass, I will have more days that I feel completely normal. I just have to be patient. I am at 3.5 now, six months later, it is slow progress but it is in the correct direction. I now try to look at what I can do now, that was beyond me in the earlier stages and not at what is beyond me now. It’s easier said than done but I know it’s what will get me to the finishing post. I am having far more good days in both my body and my head.

[Mazxstitch]

When I got to 4.5mg I decided to taper by a quarter mg. If you have 2.5mg you can cut it in half to give you 1.25mg. Also, cut a 1mg in half for . 5mg.A combination of 1.25 , .5 and 1mg works well. I am on 2.75mg now with no problems. I taper over a 5 week period using DL plan.

[Bedwell]

tapering us such a dodgy business! I took 1.25 yesterday and can’t function at all today! No flares… just can’t concentrate.. dizzy sweaty? !!! Blimey . Back to 1.5 today and for rest of well!

[Bedwell]

rest of week!!!

[Bedwell in reply to Bedwell]

Continuing… had an important physio booked for this afternoon.. so took 2 pred hoping that might just give me the energy to go. And ok to drive!! But no.. had to cancel app and the 2 extra didn’t make any difference! It’s the first time I’ve tried adding like that .. as it has seemed to help some of you on this forum. Was I stupid to think it would help in a few hours?!?! So an afternoon listening to the rain on my kitchen roof!! Thank goodness for mg little dog.

[PMRpro Ambassador in reply to Bedwell]

I think you are assuming a lot. It is very unlikely that one day or 1/4mg less would cause that much upset - unless something else was going on. Correlation is not causation!

[Bedwell in reply to PMRpro]

It has happened before.several times.. The day I take 1.25 in the morning.. no prob.. but the next day.. .. . I can’t function… still feeling very groggy now. Mouth very dry..

[NCStateLine]

Timing on this post was perfect. I have just reduced from 5 to 4.5. It has been 5 days and it is going OK but noticed my upper arms when I woke up today and it reminded me of that feeling…. My rheumy wanted me to go from 5 to 4 but thanks to you guys I convinced him 4.5 was a better plan. He wants we to go to 4.0 after 2 weeks of 4.5 but I think not. I am planning to stay at 4.5 until when I wake up a feel non-symptomatic. Can flares just mess with you slightly or do they feel like the pre-pred PMR days?

[DorsetLady PMRGCAuk volunteer in reply to NCStateLine]

Flares are usually a return of original symptoms- but as you are having issues after 5 days it could be steroid withdrawal that can kick in immediately or a few days after reduction… and does vary from nothing much to PMR type symptoms… that why it’s sometimes difficult to differentiate.

Just monitor things over the next few days, and if they get worse then you’ll probably have to assume it’s a flare- and return to previous dose sharpish.

This gives a bit more info - but as you know PMR and tapering is not an exact science 😊-

healthunlocked.com/pmrgcauk...

.. and definitely no reducing after 2 weeks…

[PMRpro Ambassador in reply to NCStateLine]

Depends how long you leave a flare unmanaged. If the dose you are at is now even slightly too low for the amount of inflammation being created, it will build up and, in the same way a dripping tap will fill the bucket and overflow sooner or later, you can end up pretty much back where you started. If any niggles stay the same or improve, it is more likely to be getting used to the new dose - but when they worsen, however slowly, then it is a warning you might have gone too low.

[singingloud]

I see it’s only been a year since you began your journey with pmr and prednisone. Give your body time to adjust. You certainly do not want to flare and have to return to the beginning and start again. I’m five years in and still working to get past 9.5 mg again. So go really slow or stay at 4.5 which is wonderful.

Hope all goes well.

[PMRCanada]

I wouldn’t go any lower at present. Around this stage I’ve had to repeat my 7-week taper twice (resulting in a 14-week taper). For instance it would be 1 day at 4, six days at 4.5. Then repeat that the following week. The 3rd week would be two days at 4 and 5 days at 4.5. Repeat. This amended taper helped me get from 6 to 5.5, and 5.5 down to 5 in a way that helped with the dreaded adrenals insufficiency symptoms, and no flare resulted either. I stay at my new dose 6-8 weeks before starting a new taper. These lower doses can be tricky and require patience. Listen to your body.

It is challenging to determine the cause of symptoms at this stage because pred withdrawal, adrenal insufficiency, and a flare symptoms can overlap. All the best.

[Sandmason]

I'm on 3.5 at the moment and I get impatient! I made an error loading my pill box last week, Just 1mg in the morning and 1.5 evening, when it should have been 2mg in the morning. It took several days to notice what I had done! Ouch!

Generally I go down by quarters, not halves. I'll try every other day on the new dose, or that failing, try the 54321 weekly thing. I'm a little flared this week but encouraged that my CRP went from 20 to 1 in the last 6 months.

Quarters are not as accurate, halves aren't perfect either.

[Bedwell in reply to Sandmason]

How do you go down by a quarter if you have tiny pills? Or have you got reasonable size ones?

[Sandmason in reply to Bedwell]

I cut them. If crumbs happen, I guess and use my eyes to estimate. The 1mg are very small, the fives bigger. Another error I just made was putting 5mg pills into my evening batch! I noticed before I took one though. Was trying to think of a way to dye the fives, maybe use food coloring mixed with cornstarch and shake it in the pill bottle. I would put the fives away but I'm going to refill them in case I need them in the future.