Hello, I wrote a post last week when I got a major GCA headache and felt incredibly weak and was having difficulty talking, finding words. I increased my prednisone from 9mg to 15mg three days ago but still feel very weak, fatigued, and major brain fog. Someone on here used the term "walking with someone else's legs" which is what I also feel like. Legs feel very heavy and uncoordinated. I'm wondering if I am experiencing adrenal insufficiency.
I went to my general practitioner and also contacted my Rheumy. I asked the Rheumy if she could test for adrenal insufficiency and she mentioned the ACTH stim test, so I asked her if she could order one for me and she said no, I have to have my general practitioner do that and that she's never ordered one before. What type of doctor usually helps us with adrenals? Do I need an Endocrinologist for that? It's hard managing our health while we feel so weak.
What should I do in the meantime until I can get answers? I would love any insight. Thank you so much. You all know more than the doctors do.
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potterylady
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There is no point in having your adrenal function tested as it will almost certainly be rubbish. The levels of Pred you’re on will be causing the glands to shut down simply because they don’t need to work with all the Pred sloshing about. Any function now is surplus to requirements so the body doesn’t bother. The “ACTH stim” test (Synacthen test) isn’t done until under 5mg for this reason to avoid an artificially low result. My Endo required 4mg and less. Your symptoms will be from whatever is causing the headache and possibly some of it will be the extra Pred if you are sensitive to it. If you did happen to be one of those people for whom 9mg is pushing the adrenal phase, 15mg should have got rid of it. Are your pills in date?
What did your doctor say about your head issues like the word retrieval?
I think I feel a little better this morning. I appreciate you explaining this. It really helps. My Rheumatologist is not very responsive. I need to change doctors. She didn't give me any answers. The Prednisone and Actemra got rid of the headache, but not the fatigue and weakness. Interesting to know that 4mg or less is required for the stim test. Thank you. My pills are good, not expired, but I'll keep an eye on that now! I hope my fourth day of 15mg will help me. How many days should I stay at 15mg?
Serious adrenal insufficiency effects are not so likely at the dose you are at although many start to feel fatigue about 10mg - UNLESS you are subjected to immense stress of some sort, Your pred dose is plenty for day to day functioning, it can't substitute for the spike that the adrenals would produce for major demands. You obviously got quite worked up over the possibility of GCA - that might have an effect like you described. But a flare of GCA or other illness could have a similar effect too.
A synacthen test won't show anything but secondary adrenal insufficiency so a bit of a waste of time and effort until you are below 5mg. And an endocrinologist can't "do" anything - you have to reduce the pred dose to a level that is lower than is needed to substitute for adrenal production of cortisol, again that is below 5mg, and sustain that long enough for normal adrenal function to reestablish itself.
I think I'm having a GCA flare too, as my head is really swollen on my right side like it was when I first got diagnosed. I'm SO glad to hear you say that serious adrenal insufficiency is not likely at this dose! And yes, this whole thing really scared me which is very stress inducing. The scare probably added to my fatigue, as I can't even respond to it with my normal system, right? Good to know that they can't do the test unless under 5mg. This whole thing started when I tried to go from 9 to 8.5mg. Do you think I should have just stayed on 9mg long term? (Along with Actemra) I really appreciate your response so much. This disease is so confusing, I don't know how I would handle it without you all. Seriously. Thank you.
Even with Actemra only about half of patients in the clinical trials were able to get off pred entirely. There are at least 3 mechanisms which create the inflammation - only one of them is dealt with by Actemra. If your GCA has elements of the other two, then you require pred to manage that inflammation and doses of 8-10mg are common. I am astounded at the number of doctors who are oblivious of this fact when using Actemra. It is clear from the study documentation - Actemra doesn't have a magic effect in days, it can take a few months to kick in and it isn;t 100% successful for everyone.
Yes, it took 2 or 3 months for the Actemra to start working for me. It makes sense that it doesn't take care of the whole GCA problem because it sure doesn't for me!!! But as you said, my doctor thinks otherwise. She seems to think I can just get off Prednisone with no problems. Thank you for the info about 8-10mg being common to handle the inflammation!! So, do you think it is reasonable for me to just stay at 9 or 10mg long term? Because I'm terrified to try to go below 9mg again. I read the paper that Dorset Lady linked about staying on 10mg a day for a year with PMR and then doubling that for GCA, so 20mg for two years. It made me feel much better about not being able to drop below 9mg. I appreciate your response and knowledge, thank you so much for writing!
I think your biggest problem is to educate the doctor that Actemra isn't always 100% the answer. I'm stuck at 8mg at presentand happy enough - I was on nearly 20mg and stuck there a year ago.
says clearly "After TCZ initiation, 46.6% of patients successfully discontinued prednisone." which is similar to the results in the Giacta trial. The mean pred dose at the end of the study was 5mg - which means some were higher. How long have you been on Actemra? It must be well under a year reading your previous posts. I think your rheumy is being too optimisitic regarding the result with Actemra - it is good but not that good.
The studies done show clearly that not everyone gets off pred, for some it can take 18 months or more and flares can occur during Actemra treatment. Your doctor needs to accept that she may be driving you too hard as yet.
Great information, thank you. I've been on Actemra shots for 6 months now. It makes me feel better to know you are at 8mg, stuck on 20mg a year ago is a bummer. I appreciate the link to the study. Yes, she was definitely driving me too hard to lower it. I was also excited to get lower, but for sure went too far and too fast. How long have you been on Actemra and do you have PMR and GCA or just PMR?
Must be nearly a year now. I've had PMR for 18 years, been on pred for nearly 14 years. I had to increase my pred dose to cope with being sole carer for my husband through Covid when there was no other option. But I then had a massive flare a few months after his death and there seemed no hope of getting the pred lower otherwise.
18 years with PMR--that's horrible. And having to care for your husband while battling PMR is unimaginable--no wonder you had a flare after his death, all that stress..... Did you ever try Methotrexate? My doctor mentioned it today as a way of lowering the Prednisone. I don't want to add another medication to the mix though. So that would be Actemra, Pred, and Methotrexate. Yikes. I wish you the best, I'm so sad you've had it for so long.
I did, I lasted a month before the fatigue became too much, I put up with the other effects - hair falling out in clumps, joint pain and constant hunger - but the fatigue finished me. I suspect it also made my arrythmia worse.
Wow, that makes me really not want to try it! My hair is already falling out big time. Joint pain and hunger and fatigue sounds like more side effects than it's worth. Plus the arrythmia. Good to know! Not doing that!
I am in a similar state, was on 5mg and seeing the endocrinoligist after first short synacthen test showed secondary adrenal insufficiency. Was waiting 6 months for next test. Also take azathioprine. Just had a massive flare of GCA. Weird and horrible headache more or less dealt with by 40mg. Like you I am exhausted, the stiffness has gone but so has my energy, pred wakes me up in the small hours but I just lie there, too tired to go back to sleep. I don't think the adrenal insuffiency had much to do with the GCA flare, that seems to have kicked off after I got some gastro virus, although I think it may have been lurking for a few weeks.
It is so difficult to disentangle which is illness which is med side effect etc. Or which illness is which!
I agree! I was really hoping that 15mg of Prednisone would take care of. I'm feeling better today, the 4th day of 15mg, but my head is still very swollen. I hope I don't have to go up higher because as you said, it affects our sleep along with everything else. I'm sorry you had a flare. I can't tell what is what either. For sleep, I take a CBD gummy, 2.5mg melatonin, and half of a Benadryl tablet. It's all low dose and does the trick for me. I had to do that when I was on high Prednisone dosage and I still do it now because I really need my sleep! I hope you feel a lot better very soon.
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