I have been on TCZ injections since December2021. I was reducing pred at the rate of 1mg per fortnight, according to rheumy's instructions. I had cautiously gone down to 3.5mg 11 days ago, when I felt a bit sick, had tummy cramps and hot/cold shivers. Lots of muscular pains, but that has been the case for some time. It felt like a mild GI infection, but 3 days later I felt quite ill - 2 sets of deathly fatigue! - bad enough that we had to cancel our first holiday in 3 years!
So I went back up to 5mg for a couple of days, then 4mg ever since. Over the next few days it has gradually felt a bit better. I informed the rheumatology nurses, and they told me to miss last week's TCZ until I got over the mysterious infection.
Early this morning I had a light bulb moment and it occurred to me that it might not be an infection at all, but adrenal gland problems. Looking at the Adrenal Gland section, it seems possible. Do you more experienced people think it likely?
If so, then should I just continue reducing pred, only more slowly, say 0.25mg at a time, or is it actually preferable to do DSNS, from the point of view of getting the adrenals to step up again?
It matters, because if it is adrenal glands and not an infection, then I need to resume the TCZ as well.
It doesn't seem possible to rely on the hospital for managing this, so I'll be very grateful for any advice - thanks.
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Sharitone
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My immediate thought was Adrenal deficiency. Any chance of you being referred to an Endocrinologist? Mine has been a great help, and explains everything, as well as doing tests. I think symptoms like yours would justify a referral.When I was on Tocilizumab, I seemed to get a lot of infections, like UTIs and chronic ones like nasal and Blepharitis and then just feeling dismally viral. I honestly didn’t press on with a fast taper after I reached 10 mgs of Pred I also experienced PMR type pains and this stalled my taper. It has taken me ages to creep down to 7 mgs. I have run out of time for Tocilizumab and wanted to stop because of diverticulitis symptoms. I don’t feel that Methotrexate is justified in my case, so I am managing with Pred alone. Sleeping my life away. My Endocrinologist will step in again when I reach 5 mgs.
Thanks for your thoughts. If I can be fairly sure that it is adrenal insufficiency, that is a good start! I suppose I could try the GP and see if a referral comes out of it, though there were no appointments when I rang last week. And I'm really not sure whether this is an issue for the GP or the rheumy helpline. I have always found this primary/secondary care thing very difficult. On Wednesday I have to decide again whether to take TCZ, and I really don't know whom to consult.
Like SJ - my immediate thought was adrenal insufficiency. I wouldn't accept "infection" alone unless it were proved - and as Dad2Cue says, if it is an infection the adrenal problem is an even greater risk. Over 2 years pred, at GCA high doses, you have definitely had adrenal suppression and no-one can forecast how quickly it will return. And it is generally accepted that your adrenal function is not reliable for up to a year after stopping pred entirely - and you aren't there yet.
I doubt the nurses have enough background knowledge, even the rheumy may be struggling. The new steroid ard was introduced because they realised healthcare professionals of all sorts weren't adequately aware. And I've heard a few stories recently that show the problem hasn't disappeared!
Thanks. It occurs to me that I had blood tests the day after this started - coincidentally, for denosumab - and they showed a CRP of less than 1. I guess that suggests there wasn't much of an infection.
This sounds exactly like an adrenal crisis. This is worth going to the ER/AE. I have adrenal insufficiency (AI) and the rule is to double my dose for the day if I am experiencing something stressful that can cause a crisis. If I find myself in a crisis I have to double my daily dose or inject steroids and head to the ER/AE. One thing about dosing for AI is that it works better to spread your dose throughout the day rather then take it all at once.
Agree with others. Would place my bet on the adrenals. Once on Actemra I took 6 months to taper to zero once I was below 5 mgs. 1mg a fortnight seems fast. Some folks needs both low dose Pred and Actemra. Need to go slow enough to let adrenals wake up and to sort out if Actemra alone will do it.
That confirms what I feel. I'll take it more slowly, depending on how I feel. If I'm not off pred by the time of my next appointment in August, then so be it. Thanks.
Thanks for answering; it's very useful. Do you think in the long run it was easy to drop the pred at 3mg, rather than reducing slowly? i have been told to reduce by 1mg a fortnight, but simply do not have the courage to go further at the moment.
You have been given excellent information here, from people who know more than I, so I will just add that, although my Rheumatologist was Gung-Ho about a fast taper on tcz, I remained cautious because of my adrenal concerns. She was amused but supported me and on the DSNS, I'm down to 1.5mgs pred with relative ease. I get anxious occasionally, but that is improving. Regardless of tcz, take it slowly. All the best.
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TCZ and chronic fatigue
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