I’m GCA two years in and now on a very low dose of Pred after taking the reductions very slowly and carefully. I’m fluctuating between 2 and 2 1/2 mg a day.
I had the totally wired and sometimes euphoric feelings when I was on really high doses, I then felt particularly low at the 8-6mg stage. At 5mg things settled down nicely. At the dose I’m on now, my emotions are all over the place: one minute I’m thinking life is just fine, the next I’m holding back tears and hardly able to keep it together. Things are ok, nothing too dreadful has happened lately, so I’m thinking it must be the low Pred dose and poor adrenal function that’s the cause of the instability. I’m just surprised that I’m this low and now struggling emotionally. I have no aches and pains...for which I am unbelievably grateful, but I knowthings can change so I’m not counting my chickens just yet. I’m thinking I’ll just push through and eventually things will settle. Just hope it doesn’t take too long...I hardly dare see anyone right now in case I well up for no reason.
Has anyone else felt like this at this stage? Thanks for reading!
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Judy211
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I am at this stage Judy ( not as low dose I now see) and I agree with you about the low moods. We certainly are paying for that tiny flash of Euphoria at the beginning. I have had a short Synacthen Test and was found to have an inadequate Adrenal function. I had a good baseline and at least it raised to the low, low normal during the test. This was to be expected due to Prednisalone suppressing the natural function for 3 years. The job now is to stimulate my Adrenals so that they start working more efficiently. I have received conflicting advice. My Endocrinologist favours coming off Prednisalone altogether ( cold turkey) and switching to the gentler and more specific Hydrocortisone 25 mgs ( I am on 5.5 mgs of Prednisalone). That is an equivalent dose. Then a fairly rapid decrease of the HC over some months. This steroid is shorter acting and is taken 3 times a day, this mimics the natural action of the Adrenal glands. Hydrocortisone is apparently weaker and has fewer side effects. He is 95% sure that my Adrenal glands will normalise and that the pain and stiffness I experience is withdrawal from Prednisalone but can last for months. The two drugs are apparently interchangeable, so I can swop back to 5.5 Pred. If it doesn’t work. You would have lower doses of HC I guess.
My Rheumatologist on the othe hand favours my coming off Prednisalone with the aid of Methotrexate which will ( if I am lucky) soften the journey. There are also views that support 4 mgs one day and 5 mgs the next day to both stimulate the Adrenals and help the PMR.
I think this is the basis for my vulnerable, low feelings. Occasionally I feel symptom free, happy and optimistic. I imagine that it’s a little shot of Adrenaline.
Perhaps you should get tested?
Having a painful, long term, tiring disease is lowering in itself. We can all relate to that. Everyone says that fresh air and a bit of a walk helps - it does. Also it can take up to a year after zero Pred to feel normal. It’s just the stage you are at that makes me think this is something else. Let us know how you get on and I will as well.
I am not changing anything until I return from Australia, late April. Too risky!
Thanks for your reply, Jane, that’s really helpful. I’ve been wondering whether to just go cold turkey myself...though not just yet. Or if not cold turkey, then perhaps take 2mg on alternate days to kick the Adrenals a bit harder. I don’t suffer from fatigue and without any pain, I feel there there is no point hanging at this low dose for any longer than absolutely necessary.. I doubt my emotions could get any more unpredictable! I’ll definitely let you know if I do and how I react. Good luck to you too...hope you’re having a fab time away.
Similar pattern to me. 8-5 difficult, began to see the light at 5mg, great at 3mg. 2.5mg I get mizzy tired days. Although I’m better in myself I have gone from not needing sleep every day to needing it again, if only half an hour. It’s getting better but it does feel that my adrenals are playing catch-up again.
Hi Snazzy. I’ve been so lucky to date with very little fatigue throughout, but emotionally it’s been a different story and I think that’s been my real Achilles heel. Everything crossed that we will both be functioning as normal before too much longer...not that I’ve ever functioned that normally!
I think several people recently have said something similar. I never had the euphoria at the start - so if I ever get to a low dose heaven help me!
This time of year doesn't help much either - here they call it "Springtime fatigue". And have you had your vit D checked recently? It is always at its lowest at this time of year.
My bloods are all fine, vit D within range etc. I’m pretty sure it’s a hormonal imbalance... it’s just not like me to have these rapid mood swings. It’s not menopause either! I’ll hang on in here and hope for the best and, yes, Spring when it comes must help too!
I also have been in that 2-2.5 range for a very long time. I find attempting to go lower tends to bring on more pain although I'm currently testing that to see if it's PMR or simply all the other aches and pains my old body has developed. I've always been a mildly depressed sort of person, and how I feel emotionally now is actually pretty good, but I've physically been much more fatigued the last little while, more so than since those difficult days around 7 mg. I do think that prednisone has affected me in many ways, hard to be objective when inside the mind/body which has changed, but thinking about your post I do remember times when I could weep at the drop of a hat, and maybe now I'm so used to being like that I hardly notice. Just know this is me, and that's going to happen.
On the plus side this has elicited, quite unintentionally, more sympathy and at least a semblance of cooperation from the blokes I've had to deal with over months of renovations....
I’ve just tapered to 9mg but am finding that I too am very emotional. First it was me welling up with joy, and gratitude and a desire to be close to my family. So much to be thankful for...tears of joy.
Lately though, since a drama-filled return from a relaxing vacation, I find myself taking on my adult children’s woes (my son has plenty). So much so the stress is wreaking chaos with my PMR and the other day I got so upset I felt the inflammation literally climb up the back of my neck and shoulders and creep up the back of my head. Took an extra mg of pred, went to bed, got up the next day, and called my kids advising them that at this time I had limited capacity to hear about their problems. Felt like a crappy mom for doing so as I’ve always been there for them through anything....the good, the bad, and the ugly.
I’m 56 and had a partial hysterectomy 4 years ago, and had not gone through menopause at that time, so this may also be part of the cause.
Either way, it is an awful feeling not being able to regulate my emotions, so I empathize with you. It reminds me of when I had post partum depression.
Now my OH asks when I cry if they are “tears of joy” or “tears of worry” and quite frankly he’d be most happy without any tears (he’s one of those calm, happy-go-lucky, even keel guys with a great sense of humour).
Hope you get some relief soon, and this is just a “stage” in your overall healing. So glad you don’t have pain, perhaps your PMR is burning out and once adrenal function is restored, all will settle down. In the mean time we are here for you!
Hi. I’m so sorry not to have replied to your lovely message sooner. I suffered an AFib attack and ended up in A and E and was then in hospital for 24 hours after a bad drug reaction. Total drama but fine again now! Just want to say good for you putting your foot down and telling your children that you cannot always help shoulder their problems.
My grown up daughter is lovely but she can be difficult. When I was sat in A and E the other evening (having driven myself to hospital) I rang her just to let her know where I was and her immediate reaction was to tell me how pressurised she felt and why couldn’t I have called one of my sons. Normally, I walk on eggshells but something just snapped and I said ‘I really can’t cope with you right now’ and I cancelled the call. She got the message!
I think we, as a generation, have tended to over parent and as a result some of our children haven’t taken full responsibility for themselves. A wake up call now and then doesn’t do them any harm.
In the meantime, it’s nice to know I’m not the only one who can’t keep control of her emotions! I hope things go really well for you.
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