After 3.5 years on Prednisolone and 1 year of Toccilizumab for GCA including sight loss (late diagnosis), starting at 60mg, I got down to 2mg following a Synacthen test in June 23 which apparently proved my adrenal glands were capable of working. However I couldn’t function at all, extreme fatigue, aching joints, no energy at all and so I upped the dose of Prednisolone to 5mg pd and am still on that. I can function, still with tiredness but can manage short bursts of cooking, cleaning etc. Recently saw endocrinologist who explained about Adrenal Insufficiency, however my body doesn’t want to co-operate, my adrenal glands apparently don’t want to wake up and start working, endocrinologist discussed changing to hydrocortisone, 3 times daily. Has anyone else been at this stage with this history? Did changing to hydrocortisone help? How do you get adrenal glands to work otherwise? Am awaiting further blood test and follow up with endocrinologist. Not hopeful as there doesn’t seem to be a solution to my predicament. Any advice welcomed.
Adrenal insufficiency: After 3.5 years on... - PMRGCAuk
Adrenal insufficiency
How do you get adrenal glands to work otherwise?
Very slow taper, tiny steps, time and patience... if your test showed they are 'capable' of working then that's a positive.
Mine took about 9 months when I was reducing from 6mg to 3mg to really get a grip - but they can still take another 12 months after finishing Pred to be at 100% capacity.
Also ex GCA patient with sight loss... again late diagnosis
link re adrenals -
healthunlocked.com/pmrgcauk...
.. and you can also see related posts on subject.
Hydrocortisone mimics the way our own Adrenals work, unlike Pred. With HC you will take 3 or 4 doses a day so your cortisol levels will vary, like nature intended. My Endocrinologist was keen on it for me. At that time I was still experiencing PMR symptoms. I decided to stick with Pred because HC is not great with our symptoms. You ought to be ok though. In your shoes I would try it. HC can stimulate our own Cortisol production. Don’t expect an overnight recovery though, it takes time.
I felt pretty rough for months with low adrenal function. Although under 5mg was better, life was not easy with fatigue, the weak Wobblies and needing to sleep. It took me well over a year to feel I wasn’t going to crash at some point in the day and even after I was off Pred I had to be careful with sustained stress like being cold all day in town. I reduced very slowly at 0.5mg introduced over anything from 8 weeks to 14 weeks when I was under 5mg. At 4mg my Synacthen test showed they could work but they weren’t enthusiastic but by 1.5mg they were better. The main point is that it can take a long time.
However, I can’t say whether your suffering is at a point where it is time to try HC or whether you need a longer, slower reduction with smaller drops with a bucket load of patience. Also, your symptoms could be inflamed by or due to the Actemra or your underlying inflammation if there is any. Actemra only deals with one type and it may be that your Pred (a wider spectrum) is getting a bit low. Or it could be all three. Your Endo won’t know. Going up to 5mg will have shut down your adrenals a bit so you may need to start slowly again. It may be you need to try the HC to see what happens as some sort of detective work.
As Snazzy mentions - is the GCA gone entirely or was part of the problem at the low dose a bit of left-over PMR-like GCA symptoms? That probably is the crux. If part of the problem is PMR/GCA left-overs that aren't managed by tocilizumab - GCA has 3 different inflammatory mechanisms, TCZ works for only one of them - it may be hanging on and it is very difficult to distinguish between the PMR/GCA symptoms and adrenal wobbles. Just because the synacthen test shows they could work in theory, practice is a whole other world. With the test you know there was ACTH present - but they don't measure the natural stuff in the test.
Many thanks for all the comments. In reply to one or two, initially at sight loss diagnosis of GCA, inflammation markers were high, biopsy, PET scan etc. high dose of steroids brought these right down, apart from relapse 3 months later, when toccilizumab was started, markers have never exceeded 4. Was always advised to increase pred at first sign of headaches (to save other eye). Had a couple of blue light admittances to hospital but not for over 18 months now. So pred was up and down for the first 2 years, gradually lowering to 2 (unbearable). Have no other symptoms other than the mentioned sight loss, occasional headache (not severe). Most horrid side effects were due to toccilizumab - weight gain, hair loss, mood swings, exhaustion. I am not sure I should have stuck with the tocc. which finished in 2021, and was glad when it finished after a year. No-one now seems to be able to get me up and running, or at least living a half way normal life. Not sure changing to hydrocortisone will change anything but reading experiences of others, I may try reducing pred by 0.5 every 1-2 months and see what happens. Are there some people completely off pred?
Lots of them - DorsetLady is one, so is Snazzy. Are you sure those adverse effects were the tocilizumab? They are more usual with pred and I have had nothing like that with TCZ, The markers don't mean anything when on TCZ - they can't be used to monitor what is going on.
No, I cannot be sure it was the tocc. I took tocc with the relatively high dose pred, have been off tocc. for over 2 years now, markers were low while on tocc and now also.
I’ve been off Pred for over 7 years… and once on Pred I never had any flares. For obvious reasons, I was never rushed into tapering too quickly by any doctor, nor was I on TCZ - hadn’t been authorised for GCA in UK at that time.
I was on Pred for about 4 and half years, even with no flares … but as we know it does its own thing, in its own time… maybe I could have got off a bit quicker - but I’ll never know -and I did what I considered best for me.
Those all sound like Pred side effects to be honest.
I have to say that the effects of low adrenal unreliability came as a real disappointment and it felt like life was never going to resemble even a hint of before. It wasn’t helped by doctors alluding to or even saying I’d be feeling great under 10mg. Just when the end was in sight, I felt debatably worse with no magic answers. Not every drop down was as smooth as another so sometimes I waited longer. However, it did get better. I’ve been off Pred since August 2020 having started in March 2017.
I felt like a zombie for several months and stuck at 5mg for a long time and it slowly improved.
Huge thanks for comments, glad to hear some people are ‘off’ pred, gives me hope to persevere. I don’t write much here on this site but do read posts, all of you are so very helpful and do lift up from the depths of despair. Thankyou.
Many people are "off" pred - but they aren't here to tell you because most people sail off into the sunset to live life and forget this episode.
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