Experiences of ending Prednisolone?

[BladesLover]

Hi. I'm into my second week since I stopped Prednisolone for GCA. This was a planned taper down following advice of Rheumatology Consultant. I'm still having tocilizumab injections every two weeks. I'm still experiencing quite a lot of fatigue / low energy. This doesn't exactly surprise me as I wasn't expecting miracles! I'm still off work and the Occupational Health doctor wants to review after I've been off Prednisolone somewhere between two to four weeks (awaiting appointment for this). Don't know if he sees the timeframe of two to four weeks as significant in some way or if it's just a randomly selected period of time?

I have a synacthen test 14th Feb to assess adrenal gland function. I had a blood test 6th Jan for cortisol. The score was 299, which my Consultant told me "is in the intermediate range but relatively reassuring." I have further blood tests to come - my neutrophils scores have been low but the Consultant tells me this can be expected on the tocilizumab.

Any insights / experiences / knowledge re life after Prednisolone and (hopefully!) recovery / improvement would be very much appreciated.

Many thanks and best wishes.

[SnazzyD]

It can take many months for adrenal function to return which is why it is suggested that one carries a medical alert in case of an accident for a year after stopping. I’d say it took me 18 months. A Synacthen test just tells you if your adrenal glands can work given a good amount of stimulation. It doesn’t tell you if they can do it to order all day, every day and in extreme situations. Your test result is as your doctor described, so your lights are on, but it isn’t a disco.

I suspect that your reduction plan was niftier than it would normally be if one were to be kind to oneself during the period of encouraging adrenal function. So feeling fatigued is not surprising.

Your fatigue could also be the Actemra and if your Pred was dealing with inflammatory substances not covered by Actemra, there might be some grumbling inflammation. Time will tell on that one.

[BladesLover in reply to SnazzyD]

Thanks SnazzyD. I like "your lights are on, but it isn't a disco." 😆 Reminds me of the Talking Heads song 'Life during wartime'.

Yes, from what I gather, my reduction plan was maybe quite quick compared to others? I started on the Pred in Feb 24 and finished the other week - 21st Jan. I was following the Consultant's advice - he thought it was okay because of the tocilizumab and I thought "well, I guess I'm happy to try being off steroids as soon as possible".

The thing that gets me with this illness / condition (whatever you call it) is how I can be relatively okay sometimes (go for a run, go on a night out etc.) but then feel knackered other times. It's inconsistent and confusing! And I think it confuses other people because it isn't always what they think of and understand as "illness". So, although I'm lucky that my work are very understanding, I kind of feel a bit of a pressure to either be fully "ill" or fully "well". But - as I'm sure you know - it just doesn't work like that!

I gather from your reply that you're off Pred now? Is that correct? Are you able to say a bit more about your experience of that? Do you mind me asking if you were/are still of working age and, if so, what happened with that?

Many thanks.

[SnazzyD in reply to BladesLover]

Tocilizumab targets Interluekin-6 specifically which seems to be shown to be holding a smoking gun with GCA. Rheumatologists do seem to vary as to how much they are willing to trust that a patient’s GCA is wholly due to it. Some people still need Pred though on a much smaller dose than would likely be otherwise. You are off Pred in just under a year and I was on it for 3.5, finishing August 2020.

As evidenced by my own experience and others on this forum, return of adrenal function can be overlooked or underestimated by rheumatologists. You wont be the first to find themselves like a limp rag at the end of their steep Pred staircase.

Boom and bust in this game is a common complaint. I think when we are doing something that we like or even just have to get through, some of our feedback is switched off. I find even now I am well into my overdraft long before I realise. It’s super frustrating but it is why I don’t have big goals any more, because it isn't worth it. Whilst I did feel broken after GCA, I think steps down occurred with repeated covid infections (imports from my family mostly) and nearly 8 years of ageing. 62 is very different to 54.

As for my history, have a read of my bio and then see if you have any questions after that. Saves me typing

[BladesLover in reply to SnazzyD]

Thank you. Yes, definitely feels at the moment like I have a very limited battery so have to think about what it gets used on!

[SnazzyD in reply to BladesLover]

Yep!

[DorsetLady PMRGCAuk volunteer in reply to BladesLover]

If nowt else, these illnesses teach you what to prioritise! Just takes some longer than others to realise.. 😳

[Perigrina in reply to BladesLover]

Just a thought (from someone who has been a manager of people who have been sick or with disabilities). For your employers, do a brief outline of the disease, symptoms and associated problems; explanation of current situation re medication and timescales; prognosis including the length of time before adrenals likely to fully function and something about remission; implications for day to day living and work; how your employer can help so you can do your best for them (including any early warning signs of a flare or how to manage bad days (a back up colleage?); timescales for review. Keep it factual, brief (but attach links to helpful documents), no complaining(!). The task is to help them help you.

[BladesLover in reply to Perigrina]

Thank you. This is helpful. I've done what I can for the above. But I think part of the problem is uncertainty about prognosis (although they know what some of the average stats are for recovery). Also, at what point I will have recovered "enough" is a bit of an uncertainty. I'm not really sure about the length of time before adrenals are likely to fully function? Although, again, they're aware it can be a significant time. They've so far been very understanding and supportive. I'm awaiting another conversation with the occupational health doctor. I've decided that - when I do go back - it'll be part-time (18.5 hours as opposed to 37 hours per week). I'll be entitled to a phased return so working even fewer hours than 18,5 for a while (normally 4 weeks). I've mentioned that - initially at least - it will probably be better for me to work a part of each day rather than a block of 2.5 days at the beginning or end of the week. Thanks again.

[PMRpro Ambassador]

Half of GCA patients have other underlying causes for the inflammation besides IL-6 as Snazzy mentions. If YOUR GCA is like that - TCZ won't be 100% successful, you would need some pred. Just don't be fobbed off.

[BladesLover in reply to PMRpro]

Thank you. I'll do my best! My Consultant did mention that I might need some pred again at some point. I guess reviews and blood tests will help to determine how things go but I can contact them at any point if I need to. I've got the synacthen test 14th Feb, blood tests 18th Feb and 13th March, a phone review with the Rheumy Consultant 18th March and an appointment with Endocrinology Consultant 1st April.

[PMRpro Ambassador in reply to BladesLover]

Blood tests don't tell you much - if you are on TCZ they should remain low so symptoms rule.

[DorsetLady PMRGCAuk volunteer]

Different scenerio, so not of much use to you really… but I have been off Pred and GCA free for over 8 years. Had already retired pre diagnosis.. but as stated just be use you are off the Pred doesn’t mean your adrenals suddenly spring back into life, which unfortunately many patients [and some doctors] seem to think. It can take anything up to 12 months for them to be ‘all systems go’..

My life [considerably older than you] is great thank you, just nearing the end of a 8 week trip to NZ…[2nd time since GCA, 3rd in all].

[diana1998 in reply to DorsetLady]

Hope you've had a great stay. I have family who live near Nelson. Moved there nearly 3 years ago and coming over for a holiday in July. A friend of mine travelled around there last year and said it's beautiful!

[DorsetLady PMRGCAuk volunteer in reply to diana1998]

We spent 5 days in Nelson [one grandson works/lives there] - and travelled around , it is beautiful and fantastic Airbnb with views over harbour.

Nelson NZ

[diana1998 in reply to DorsetLady]

Looks totally amazing in beautiful weather. Horrible here!

[DorsetLady PMRGCAuk volunteer in reply to diana1998]

It was -except for one day, rain am…but it’s been a bit hit and miss tbh… many days a bit overcast am, but then clearing up as day has gone on… we actually managed bbq in garden this evening….and had a few lovely days in Queenstown/Milford Sound beginning of this week.

[diana1998 in reply to DorsetLady]

Looks like a much more pleasant climate than my cousin has in Melbourne where the heat can be overwhelming.

[DorsetLady PMRGCAuk volunteer in reply to diana1998]

It is… but when it’s hot, it can be very hot…

[PMRpro Ambassador in reply to DorsetLady]

What sort of temps does it reach?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Low to mid 30s - so not as hot as many places, but there is less pollution which appears to make sun stronger and the Pacific Ocean makes it warmer and there’s often a drying wind… but it can be very variable… old saying “four season in one day applies..

[BladesLover in reply to DorsetLady]

Ah great. Hope you're having a great time (or had a great time if back now). Yes, I didn't expect my adrenals to suddenly spring to life - but I'm always trying to be optimistic! I get the feeling that the medics I'm in touch with know the likely score but sometimes are a bit reluctant to say because they don't want to influence me psychologically! I can see where they're coming from I suppose as I guess some patients can maybe get influenced by certain things - e.g. if someone is told it might take them a year to recover, they might very much have that in their heads as a definite instead of a probability?

[DorsetLady PMRGCAuk volunteer in reply to BladesLover]

In Singapore airport at present!