Hello all. I've got GCA / PMR / LVV, diagnosed last year. I've been on prednisone since last September, first at 60 mg, then at 20 for a good while, then at 10 for a while as well, before trying to reduce under that (0.5 every 2 weeks), and currently at 6.5. Also taking actemra.
After my last infusion, my aches and pains are not too bad (blood markers for inflammation are great), but my fatigue is off the charts. Generally feeling totally frazzled when I can get myself off the couch / bed. Other symptoms include diffuse headache, abdominal pain, weakness, and irritability.
To me, it sounds like adrenal insufficiency. At the same time, my blood pressure is high, no weight loss, no vomiting/nausea/diarrhea. Definitely no darkening of the skin.
What do you all think? Is there a test I can take to be sure? Thanks!
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winfong
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It does sound like adrenal insufficiency - you can go for an 8am cortisol blood test now that you're under 7mg of prednisone.
Do be aware that actemra masks your inflammatory markers, so there's no way to know what they really are while you're on it. For example, here is just one paper I just pulled from google. I've seen many more shared in other groups: ncbi.nlm.nih.gov/pmc/articl...
Most endocrinologists won't do a synacthen test until a patient is below 5mg and preferably down to 3mg - it just isn't worth it because you KNOW that the pred is suppressing the adrenal production of cortisol.
Yes, that's why I said an 8am cortisol blood test, which is not a synacthen test. I've had adrenal insufficiency for 4 years now.
The rheumatologist should start off by giving a morning cortisol test (preferably on a couple of occasions just to be sure) if you're at least under 7mg, and if that comes back as nothing or too low, then refer to an endocrinologist who can follow up with tapering the patient to the appropriate dose to do a synacthen test.
Would say it’s adrenals struggling to start working again for sure, it affects a lot of people, but they usually do get the message with time and patience. Have a read of this - healthunlocked.com/pmrgcauk...
My suggestion would be that while you were on the high doses of pred, your adrenal function was temporarily suppressed. Now you have tapered to close to the equivalent of physiological levels of cortisol, your adrenals are struggling to reactivate, but have not yet come to terms with the additional level of artificial steroid that remains. With a bit of luck, if your steroid dose stabilises, your adrenals will figure out how to function in the "new" environment. While they do this, you will experience periodic dips in cortisol that might give you symptoms of insufficiency.
For me, after the first few months of pred, I had terrible, recurrent periods of sweating, shaking, nausea and exhaustion, to the extent of being hospitalised on 2 occasions. After about 18 months, a pattern became established of waking in the morning with headache, nausea and extreme weakness. However, none of my medics were interested.
So I sent off for some saliva cortisol tests you can order from commercial labs such as medichecks. They showed that my morning cortisol levels were virtually zero
I eventually managed to persuade my endo to do a short synacthen test, which confirmed adrenal insufficiency. Since then, I've been on a maintenance dose of 6mg methyl pred. and the awful morning symptoms have resolved. My adrenal function has not been entirely extinguished, since I am able to function OK(ish!) even if I miss my morning steroids - I seem to have a kind of emergency reserve tank there.
I'd be fairly optimistic at this stage, because you still haven't been on pred for very long. It may be just a temporary adjustment phase?
Hi, l’m no expert in Actemra (TCZ) but the drug affects your blood markers so your inflammation markers will always be low, that is very important to know if you ever get a serious infection as it won’t show up on blood tests. DorsetLady has sent you the link about the adrenal glands & the effects of Prednisolone. Many of us struggle at around 7.5mg which is approximately the physiological level we need daily, so the reduction has to be slower to ‘wake’ the adrenal glands up.....
It's crazy that rheumatologist don't take that on board when they talk to you, particularly when they are the ones to put you on Actemra. When I say I have some symptoms returning they just say it can't be that as all my inflammation markers are normal. It's so frustrating.
I attended a Lecture on TCZ & it was one of the Points the Prof raised about Blood Markers for Inflammation wound always be Low & you must always point that out to any Medic if you are ill with an infection. I’ve never really studied it any further as l am not a candidate for it.
Do they not read the medical literature! Like the trial results? Where it tells you that ESR/CRP are not valid as a disease activity monitor for patients on Actemra and that symptoms MAY return in half of patients? Because there are at least 3 different mechanisms causing the inflammation in GCA and tocilizumab only works on ONE of them, the production of IL-6.
I can't find any of the others - but even at 52 weeks of TCZ, only half of patients have achieved full remission of symptoms without pred. TCZ may be good - it isn't perfect.
There is evidence that the disease process continues - despite TCZ
It does yes - and no, no test that is worth it yet. You need to be below 5mg pred before checking cortisol production won't be compromised by the dose of pred you are taking. Then a basal cortisol test makes sense to rule out it NOT being adrenal insufficiency and if it looks as if it might be, a synacthen test.
My third cortisol test in the morning. Since changing from 3 mg of pred to 15 mg of hydrocortisone, I’m showing signs of adrenal insufficiency. Waiting on results of this one to see what my rheumy does next. I intend on telling him that it’s ruining my quality of life after months of feeling fine on 3 mg.
Hi there, when you say 'do better' on pred, what does that mean? Better pain mgt, less fatigue? I am as you can imagine, confused. Both are steroids, one supposedly natural the other more powerful....
Nothing natural about hydrocortisone - except it is the same structure:"Hydrocortisone is a man-made version of a natural substance (cortisol) made by the adrenal gland. This drug is used to treat low cortisol levels caused by diseases of the adrenal gland (such as Addison's disease, adrenocortical insufficiency)."
In terms of side effects - you said " I intend on telling him that it’s ruining my quality of life after months of feeling fine on 3 mg"
Yes, the rheumatologist encouraged me to to keep reducing pred and once I got to 1mg then 0.5mg I felt on the one hand fatigued from low dose, a little more pain and stiffness, but on the other hand lost 6 kgs. I had put on 8kgs since taking pred.I've started HC at a dose of 10mg morning then 5mg/5mg at midday and around 4pm and that is, so far. working well. I do feel better, which is ultimately the important point. I guess I am just a little apprehensive as to what the side effects might be with HC and whether it will be like pred - insomnia, 'brittle muscles', weight gain / uncontrolled appetite because of intereference with leptin & ghrelin etc etc.
I am seeing an Endocrinologist in a week so that should help answer some questions and put this all in context as I do not understand Adrenal Insufficiency, it's full ramifications, the benefits & downsides of HC therapy, and AI/Addison's different degrees of seriousness. For example, the rheumy said 'you have Adrenal Insufficiency. ' I said 'so, I have Addisons?'. He said 'no you'll have Addisons if you dont start HC....' The cortisol numbers were low in the SST... hence my confusion.
Does DL's post not help? He isn't strictly correct - you DO have Addisons, secondary to long term pred. But the result could well be due to you reducing the dose too quickly for your body to keep up with after about 5mg. It isn't an on/off switch, it is a gradual process and allowing plenty of time helps. OTOH - being on HC is supposed to encourage the return of adrenal function as it is more like the natural pattern of cortisol than 1x daily pred which does the same thing.
While you are on a dose of pred above about 8mg, your body doesn't make cortisol because the pred does the job, Once you get to 5mg or so, your body must top it up so your body functions properly - it is essential to life. The other aspect is in an emergency your body would produce a spike of cortisol for the fight or flight response but with Addisons, primary or secondary, it often doesn't because the adrenals are asleep. For most people who have been on pred, adrenal function DOES return but takes a lot longer than most non-endocrinologists appreciate. Leeds did a study a couple of years ago and were very surprised at the results.
I have my specific SST scores now. So, the basal rate was 'Cortisol (fasting) 121.3 and the measurement after 30 mins was 'Cortisol (30 mins) 259.8' The second measure is the one that I understand is supposed to rise 430 nmol/l with an increment of 200 from base.
Any views on these scores? I will be sharing them with the Endocrinologist that I'm seeing next week.
Lowish - and I imagine the endocrinologist will arrange for you to get a rescue pack in case of an adrenal crisis. But he may just encourage you to wait - as we keep saying, adrenal function takes time to get back to normal, it can be up to a year after stopping pred altogether. There is a response which is a good start - it isn't as if your results show nothing!
Thank you, yet again, for objective and helpful thinking.I'm not alone on this forum in having a huge appreciation for your thoughts, feedback, expertise and knowledege.
I breathe easier (genuinely relaxes a modicum of ribcage tension ) when I read your responses.
Have to wait for phone call from Rheumy nurse who I shall ask if she can ask consultant to ring me. I just feel I’ve been changed and left to fend for myself! I wonder if transferring back to 3mg pred will put me back where I was 🤞🤞🤞🤞
Thanks, all. Very helpful. Sounds like it's early days for me yet, at least when it comes to the adrenals. Maybe it would be better for me to concentrate on the low-markers-but-still-many-symptoms angle.
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