Problems reducing

[Kay45]

Hi my husband was diagnosed in March with GCA and started on 60mg prednisolone. He has been having lots of problems since reducing, bloods are ok, but fatigue, plus general feeling of always being unwell never goes away. He often has to go to bed for a rest during the day as he can’t carry on. At the moment he is on 7mg and is frightened to reduce. Any advice would be appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi Kay,

Two points -

1. think you husband has reduced too quickly so therefore is below the level of Pred he actually needs, and

2. Around the level he is at now his Adrenal Glands need to start working again (they switch off once you’ve been on Pred for more than 3 weeks and higher than around 7.5mg). That’s most likely the reason for his fatigue.

Can you give a bit more detail -

rate of reduction, other medication he’s on, his day to day activities, any other health issues, what he means by feeling unwell.

Then we can better advise.

[Kay45 in reply to DorsetLady]

Thank you very much for your quick reply, much appreciated.

He started on 60mg by infusion for 3 days in hospital. See below:-

12/04/201915/04/2019603Infusion

16/04/201916/04/201900

17/04/201908/05/20196022Tablet

09/05/201922/05/20195014Tablet

23/05/201905/06/20194014Tablet

06/06/201919/06/20193014Tablet

20/06/201903/07/20192014Tablet

04/07/201922/07/201917.528Tablet

23/07/201931/07/2019159Tablet

01/08/201908/08/2019158Tablet

09/08/201931/08/201912.522Tablet

01/09/201930/09/20191030Tablet

21/09/201901/10/2019931Tablet

21/11/201901/11/2019830Tablet

01/12/201901/12/2019730Tablet

Other Medication he is on:-

DAILY

Atenolol - 25mg - Tablet - Daily PM

Ramipril - 25mg - Tablet - Daily PM

Omeprazole - 20mg - Capsule - Daily AM

Prednisolone - 7mg - Tablets - Daily AM

Adcal-D3 Caplets - 750mg - 2 x Morning and Evening

Systane Balance - Therapeutic Eye Drops - Daily as required

Each Week (Monday Morning)

Alendronic Acid 70mg

Every TWO Weeks

Adalimumab - Imraldi - 40mg - Subcutaneous - Commencing 03/07/2015

He is retired and normally very active. The symptoms are akin to having a heavy head cold or flu and general fatigue, causing him to rest in bed for an hr a few times during the day.

Hope this is helpful. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Kay45]

So my understanding reduction has been as follows-

12/4 - 60mg

9/5 - 50mg

23/5 - 40mg

6/6 - 30mg

20/6 - 20mg

4/7 - 17,5 mg

23/7- 15mg

9/8 - 12.5mg

1/9 - 10mg

21/9 - 9mg

21/11 -8mg

1/12 - 7mg

Would say okay probably down to 15mg, maybe even to 10mg at a push, but after then he should have slowed down. See he had 2months at 9mg - was that because there was a problem?

Once reaching 10mg should only reduce 1mg per month at most, but either 0. 5mg per month or 1mg every 2 months (same result whichever is best for patient). Recommended taper is not more than 10% of existing dose - so at 10mg that would be 1mg, below that it obviously becomes less than a full 1mg tablet. Uncoated tablets can be cut.

I would say he is trying to do too much, he may feel okay, but he does have a serious illness and needs to pace himself better.

Bet he was also told by doctors that GCA only lasts 2 years as well - wrong.

Have a read of this, including the links - and you might find why he is having problems -

healthunlocked.com/pmrgcauk...

This explains a bit about adrenal glands -

Adrenals - Quick explanation-

Once you have been on steroids for more than 3 weeks and at a dose higher than 7.5mg (which is equivalent to the normal cortisol production by your Adrenals- called the physiological level) they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.

That means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena!

You must tell medical people you are on steroids so they don’t suddenly stop them - that could cause a steroid insufficiency problem and your body would really struggle.

When we get low levels (around 7.5mg) we need to reduce very slowly to nudge the adrenals into working again.

For the majority of people they do start working again - although it’s not like switching a light on - one day they’re asleep next day they’re awake! It takes a little while to recover all function. But there is a test (Synacthen test) to check if they are capable of working - not if they actually, just if they are capable of functioning. GPs won’t usually refer you for test until you reach 5mg and if you are having problems (fatigue, nausea etc).

**************

Cortisol and pred are not the same. The body normally makes about 30mg of cortisol per day though measurements of 300mg have been measured in patients undergoing surgery. 30mg of cortisol is approximately equivalent to 7.5mg of prednisone.

[Kay45 in reply to DorsetLady]

Thank you very much, he was thinking of putting the dosage up to 9.5mg today & reducing 0.5mg per month after. What do you think, would that be a plan ? Sorry to have all these questions!

[DorsetLady PMRGCAuk volunteer in reply to Kay45]

No problem - that’s what we are here for.

Try the 0.5mg per month, but- and it’s a big but- only if no symptoms return.

Slow taper will also help Adrenals.

[gifford7 in reply to Kay45]

Copied the last 4 months of pred dose with spaces or dashes

01/09/2019 30/09/2019-10-30Tablet

21/09/2019 01/10/2019-9-31Tablet

21/11/2019 01/11/2019-8-30Tablet

01/12/2019 01/12/2019-7-30Tablet

Indicates that below 10mg the taper of pred is 1mg/month.

This is an aggressive taper and may need to be decreased to 0.5mg/month

and/or suspended til extreme fatigue symptoms decrease.

[Kay45 in reply to gifford7]

Thank you for your reply, that’s what we have been thinking!!

[PMRpro Ambassador]

As has already been said, that is a very speedy reduction for a patient with GCA started at 60mg. The size step in the taper should be reduced as the dose falls - below 10mg the reduction should be no more than 1mg per month and even that is too fast for some.

However - why is he on Adalimumab? He was obviously on that long before GCA turned up to play?

[Kay45 in reply to PMRpro]

He has put the dosage up to 9.5mg just!! So we shall see how he goes on.

He has had psoriasis since he was 30 going onto psoriatic arthritis, so a long time, he is now 71. Loads of treatment too many to list over the years, methotrexate etc. etc. going on to adalimumab in 2015. It’s amazing for the psoriasis & arthritis.

Thank you for your assistance.

Happy & healthy 2020 🤞

[PMRpro Ambassador in reply to Kay45]

I suspected that meant he had another a/i disease -an almost universal component of a/i disorders is fatigue. He gets a double whammy and at 7mg there is the adrenal component too. Slow that reduction down a lot - not more than 1/2mg at a time and never more often than a 1x monthly.