I've been on 7.5mg for nearly 4 weeks now and I'm just not coping, depression is awful no appetite, feeling sick, dizzy pain in my lower back, no pmr stifffness though.
I just feel as if my body just can not cope on 7.5mg and I need to increase back to 8mg.
It took me 7 weeks to get to 7.5 from 8 so I did it slowly so upsetting nearly 6 years of pmr.
This sounds very much like an Adrenal Issue if you are not suffering any PMR Stiffness.
If you felt better on 8mg please return to it & book an appointment to review some of these other symptoms with your Doctor.
This could be depression or simply too low a dose of Pred as your Adrenal Glands are not working. But l do think you need to discuss it with your Doctor.
Kind Regards
MrsN
Thank you for your reply.
I have been to Doctors a few weeks ago for the depression he just said go back to 10mg but I didn't as I thought I'd try and stick it out but now I'm changing my mind and thinking maybe go back to the 8 and see how things go from there.
I do agree with you I think my adrenals are not playing ball on this reduction as I've had problems here many times before.
Try 8mg for a few days & if no better, your GP has already given you advise, l know you don’t want to go back to 10mg but at least it’s an option.
You may actually feel a bit better for talking about it, but the nausea/not eating won’t help either because if your blood sugar levels are low, that will add to the problem.
You could go to 8mg & book a telephone consultation with your GP for mid week as he has suggested the higher dose.
I do hope you feel better soon.
MrsN 🌷
The symptoms you describe are usually associated with adrenal insufficiency - although some people do manage to get a little lower before it hits so badly.
As MrsNails suggests you need to seek medical advice, and maybe in the interim return to 8mg - that’s just above the physiological level of cortisol your body naturally produces - so that might help.
As you’ve been on Pred for 6 years it’s no wonder your adrenals are struggling to function again.
And there could be other issues, like low iron or some other nutritional imbalance. Worth having checked if it hasn't been done already. If something is found which when corrected helps you manage on 8 mg pred rather than 10 even that could be good.
I agree with the others and it sounds like my experience around 7mg. I got through by trying to reduce any demand which narrowed my life down to nothing much other than the bare bones like cooking and a few chores. I didn’t go out or involve myself in anything because it was just too much and by 5pm I’d be a jibbering wreck. I lost the summer of 2018 but started to see the light around 6mg and it got better from there.
I'm afraid I'm only just 60 and still having to work so find it difficult to slow down although I do try as much as I can and my husband does do a lot more around the house for me now.
Funnily enough I always feel a bit better after 5pm.
Thank you and best wishes to you.
I would certainly have medical advice about this. It really does sound like your Adrenals are protesting. It may be something to do with your personal absorption of Prednisalone. I hope you have a clever doctor. Maybe even a referral to an Endocrinologist? They do have a different take on it. I would also seek treatment for persistent depression, it’s not something we should just put up with. Good luck.
It does appear to be adrenal insufficiency at 7.5mg pred. see:
endocrine-abstracts.org/ea/...
Adrenal insufficiency in treated PMR: The tip of the iceberg
excerpt: "The mean time to adrenal recovery overall, from baseline test was 18 months. 18% of patients with evidence of adrenal insufficiency had their prednisolone switched to a shorter acting glucocorticoid. Despite having an abnormal SST result, 43% patients were not referred to an endocrinologist."
"Methods: We retrospectively identified patients seen in rheumatology outpatient clinics with a diagnosis of PMR, GCA or LVV, who had cortisol levels or short synacthen tests (SST) performed, between January 2014 and November 2017"
Then go back to 8mg, wait a while and try again. But DO talk to your doctor again.
It doesn't mean you won't get lower, just not yet. But anyone who has to work almost always needs a bit more pred.
I am down to 4.5mg. I did as much reading as possible in medical journals, not only about PMR, but also on how adrenal glands function. Several articles stressed the importance of exercise to stimulate adrenal activity. I have been working diligently to increase my walking capability to see if it helps. This morning at the river park over rough terrain, I managed over 2.5 miles with one short sit down on a bench. Don't know if it helps, but I will continue to try.
When walk is throu, I am exhausted, but do feel better as the day progresses.
Forgot to mention in earlier post. I found I did not do well on taking all the prednisone in the morning, when on larger dose, so I divided it between morning and evening. However now I am down to 4.5 am trying to get back to one dose. Over the last 3 weeks I have gradually changed, 5:30am and noon, now moved the noon dose to 9a.m. It seems to be working OK, so when I drop to 4 will try to take it all in a morning dose.
Thank you to everyone for your replies.
I have gone back to 8 mg this morning hoping and praying this will help me.
I can cope with a lot of things but the depression is crippling me, I'm already on 50 mg of sertraline for depression and cannot go any higher as I have a bad reaction to high doses.
I hope you feel better soon. It's not fun feeling low. I'm glad you have a good support system here...the human body is such a complex system! I haven't even fully got my head around adrenal function or the lack thereof! Please keep us posted as to how you get on.
Keep us informed how you get on. All best wishes.
You sound like I did awhile back. Got down to 4mg and was absolutely miserable, but resistant to raising dose out of stubbornness. I worked hard to get here, and I'm staying here. But eventually came to reason. Increased my dose and felt like a new person. Hope you will do the same.
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