Reducing Prednisolone GCA - what symptoms to look out for?

[SomersetWife]

I started Pred 1st September, initially had 60mg Pred for 2 weeks, am coming to the end of my 40 mg Pred for two weeks, blood tests tomorrow to check levels and if okay, am to reduce to 30mg for two weeks. When I dropped 60- 40, headache worsened and I felt more fatigued - this persisted from day 2 - day 6 on new dose. No headache since (apart from that caused by having a TAB at day 25 from GP diagnosis - not heard anything from Rheumatogy yet but pretty sure this is going to be a negative result). I have a few questions 1. If I try to do anything much, I am so tired out (just went for an amble round a local garden yesterday - wiped out today) - is this ‘normal’? 2. Is 30mg going to be enough to protect my sight if I do have a flare? 3. What symptoms should I be on the lookout for and what should I do about them. Rheumy says I am ‘low probability’ for GCA as I’m‘atypical’ and although most of the jaw pain went after 1st Pred dose, headaches have taken 3 weeks to go.

[SnazzyD]

Withdrawal gave me headaches starting from day 1-4 but they a) responded to Paracetamol and b) lasted a few days. On high doses and early days for GCA prepare to feel wiped out. The energy burst that is often sited takes different forms and should always be eyed suspiciously. On high doses I’d say is like being an exhausted, one legged, insomniac chicken with its tail on fire. Medium doses like being a boring drunk who thinks they are a wit and who thinks they are more capable than they are. The lower doses are better but can be like being a toddler that doesn’t know it badly needs a nap until it’s too late. Adrenal phase is when you jump into your getaway car and find it has no petrol. Other metaphors are available, it’s an individual thing.

[SomersetWife in reply to SnazzyD]

Thank you- I didn’t take paracetamol last time for the headache so will do if I need to this time.

[SnazzyD in reply to SomersetWife]

I spent most of the first year, worrying if every single thing was a flair coming. The first four were the worst. After a while you spot patterns and subtle differences between symptoms.

[SomersetWife in reply to SnazzyD]

Yes, I think that’s my problem- I know when things are ‘out of whack’ but I don’t recognise their significance - yet!

[Rimmy in reply to SnazzyD]

Ha ha ha Snazzy - love these analogies - I think I fluctuate between the 'boring drunk' and the over-tired 'toddler' - currently on a medium dose (still) after heading for 4 years. But at least we lot have some 'excuses' I have seen similar behaviour from the 'Pred-free' population - so perhaps we are not quite as 'bad' as we think !!

[Rimmy in reply to SnazzyD]

I will add I rarely drink these days - even a glass of wine now quickly turns me into the exhausted toddler !

[SnazzyD in reply to Rimmy]

Now that’s tragic.

[DorsetLady PMRGCAuk volunteer]

Hi,

Answers -

1. Very typical I’m afraid, which is why us oldies keep banging on about pacing! ...it’s takes a while to get your head around, and it’s a very fine balancing act between doing enough to try and lead a relatively normal life, and doing too much. Have a look at this post -

healthunlocked.com/pmrgcauk......

2. You don’t know that 30mg will be enough to protect sight, but very unlikely - which is why normal starting dose with sight issues is 60mg. But a flare doesn’t automatically mean eye issues...but it is what people fear (naturally).

3. Any return of symptoms you had pre diagnoses/pre Pred. Contact Rheumy Dept, GP, or failing those NHS 111 or local A&E Dept.

60-40 is a big jump, so no wonder you felt rubbish, but it is resolved then probably steroid withdrawal rather than a flare. But if me, I would be negotiating for 5mg reductions from now - until you reach 25mg, then 2,5mg.

As I have said before “atypical” is bandied about too much - my GP even had me listed as that - and I certainly wasn’t (knowing what I know now) - just meant she misdiagnosed!

[SomersetWife in reply to DorsetLady]

Thank you, much appreciated

[PMRpro Ambassador]

I'm afraid the fatigue is "normal" - or maybe "par for the course" is a better description! It is part of the autoimmune disorder and accompanies almost all such illnesses. The pred doesn't have any effect on that, it is something to try to manage yourself with lifestyle changes and pacing and resting. For some people the pred adds to the fatigue - for others the high doses cause a Duracell Energizer Bunny effect which makes them do rather more than they should and then they hit a brick wall of fatigue.

healthunlocked.com/pmrgcauk......

has some links to useful and less serious looks at managing fatigue in chronic illness.

Is 30mg enough to protect sight? Apparently rheumatologist Rod Hughes thinks so - but if the symptoms return, it means the inflammation is probably mounting up so don't ignore it, speak to your doctor asap. There may be a point where the inflammation is too much.

[SomersetWife in reply to PMRpro]

Thank you- I guess that what you and @DorsetLady are saying about symptoms returning/worsening is try to get advice straight away - would you up the Pred to previous dose if headache not responding to paracetamol and problem arising over weekend with no GP /Rheumy to call? Not keen on trying 111 or A&E atm if at all avoidable!

[PMRpro Ambassador in reply to SomersetWife]

As I just said to someone else - you may not WANT to use A&E or 111 but what we want and what is sensible are two different things. If GCA is flaring you need expert care - just as you would with a heart attack or stroke. The loss of vision in GCA is only a stroke in a specific format. And they are taking all the appropriate measures in A&E - they don;t want Covid any more than you do!

A problem arising over the weekend is WHY there is A&E and 111. If the headache responded to paracetamol that makes it less likely to be GCA - doesn't rule it out though. And yes, I wouldn't be afraid of going back to 30mg for a day or two until I could speak to a specialist - but PMR flaring a bit is a totally different matter to GCA and that it something I really wouldn't mess about with.

[SomersetWife in reply to PMRpro]

Thank you for the sound advice - it’s just that my 78 year old husband was diagnosed with COPD at the end of last year and subsequently had a skin cancer removed - we’ve been so careful as I’m worried for him -..... I know what you’re saying makes sense though

[PMRpro Ambassador in reply to SomersetWife]

No more worried than I am about my husband - if he gets Covid it will be curtains because he only has one very dodgy lung, cardiac and renal problems and is very frail for other reasons too! But we are making regular visits to the hospital for outpatient appointments - it is probably safer than going shopping which I have to do as there is no online shopping here at all

Just remember that IF it were to be GCA, you might end up no use to him at all.

[SomersetWife in reply to PMRpro]

I’m so sorry to hear about your husband’s health problems- and what you say is absolutely true, thank you