Hi everyone. I have at last, got down to 6 1/2 after struggling on 7 for some time. I used the dead slow stop method. I have been on the new dose for 5 days now, but am feeling very unwell. I have no energy whatsoever and am having the occasional dizzy spell.
I wonder if you could tell me if this is normal please.
Thank you x PS I am not having any pain or stiffness at all.
Hi Attic,
Could well be your adrenal glands not working properly yet. I was very fatigued once I got below the 7mg mark, if fact it took me until I got down to about 3mg before they started going correctly. I also got some dizziness - might be idea to get blood pressure checked. People worry about high BP with Pred, but I find the opposite!
If you're not getting any pain or stiffness then I'm guessing that's what it is, but monitor things for a week or so. Even doing the DSNS plan at these levels you still have to be aware of extra stress on your adrenals. I used to stay at each level for a few weeks longer if I felt a bit grotty.
Hopefully, it's nothing more, but as we always say- if in doubt, talk to doctor.
Thank you Dorset lady. I had my BP checked on Thursday and it was on the low side, but that is usual for me. I plan to stay at 6 1/2 for at least four weeks now to see how it goes. Do you think that will be long enough?
Thank you, Attic x
Hi again,
Would have thought so.
It just gets a bit frustrating when you are reducing slowly and without any flares, but you still get these episodes of fatigue.
Unfortunately some of us have lazier adrenal glands than others, and there doesn't seem to be a lot you can do about it as individuals, except reduce slowly, as you are already doing. I didn't get it all the time, but on occasions, so I wasn't really worried about them not going to work - eventually. I put mine down to being on Pred for 4 years and starting at 80mg, but I don't really know whether that is a factor.
If you find after a few months, your fatigue really doesn't get any better, or you have it all the time, then you could ask for a test to check they are capable of working.
Good luck.
Hi DorsetLady - great advice as always and am I right in understanding that one needs to stop their meds for 3 to 5 days before a blood test can be completed to check for adrenal in/sufficiency?
Blessings 
Hi Megams,
Not sure about stopping meds prior to test, as I never had one. As I said, I wasn't fatigued all the time, and having posted about problems, I assumed my glands were capable of working, just a bit on the slow side.
The fatigue only seemed to affect me after I'd eaten a snack for lunch (never have a big meal during day) and only if I tried to do anything too soon afterwards. Perfectly okay if I sat down for half an hour and let it digest! Strange.
This is interesting DorsetLady - it almost sounds as if every workable part of our body struggles to a degree with tapering, digestion no exception.
I guess the secret is continuing to listen to the body as we go remaining focused to changes that's if the brain hasn't turned to cotton wool in the meantime like mine this morning.
Blessings
No - no pred is to be taken in the 24 hours before the test if you are having a synacthen/ACTH stimulation test. That is enough. It would be dangerous to stop for 1-5 days if the patient had no adrenal function.
How interesting PMRpro - so pleased I tacked my query on the back of Attic's question as saw Rheumy last week & asked him the above question :- "is there a blood test that can test my adrenal in/sufficiency? I asked this of him at time as I was 4 days into a 2.25mg (hydrocort) taper which he was pleased to hear. Remembering 2.25mg (hydrocort) equivalent to 0.50mg pred). Rheumy said that I would need to stop steroid for 3-5 days for accuracy............ My comment to him was that I wasn't ready to try this yet. Not due to see him now until August. I am feeling a little like Attic yesterday & today with fatigue, no appetite again & nausea. Will push on as we do. I am now presently 5mg morning, 7.5mg evening =12.5mg (hydro) = 2.5mg pred.
My appreciation once more & will place a new post for an update of my goings on in a week or two after seen Gastro.
Blessings
Hello Attic
If it helps, I've experienced very similar symptoms at different thresholds of Pred reduction. First, at around 10mgpd 6 months ago, and then again at 6.5 mgpd about 6 weeks ago. Now, steady does it at 7-ish mgpd for a while and feeling more stable (fewer yo-yo bounces of fatigue / pain etc) until 'feeling' ready for another gentle, graduated reduction.
From experience and with the help of much wisdom from others here, the 'deathly' fatigue (as opposed to feeling just tired) seems to be the body's (adrenals') reaction to too-much-of-a reduction and / or too quickly: regardless of what the best of tapering 'plans' suggests. And, yes, you feel truly rotten during this part of the process.. :-(.
Again, and from experience of the PMR / steroid reduction process, I think that recognising the probable cause of flare-ups of any particular symptoms (e.g. pain, stiffness, fatigue) is key to what action to take, or not. Of course, whatever the symptoms are (as above) also have to be considered in the context of external factors such as stress, over-exercise, or other health issues.
My interpretation of things from the various experts here seems to be that managing the combined and conspiratorial symptoms of PMR and steroid reduction are, at best, a bit like walking a very long physiological (and emotional?) tightrope. To stay 'on the wire', you have to keep a steady head, be aware of what's going on physiologically / how your mind and body are reacting to it, and to try to have some faith that the tough bits are part and parcel of the process. Easier for some of us than others..!
To quote an old saying, 'the best of plans can always be modified'. Without denigrating the very sound methodology around the most successful of tapering plans (which are, essentially, mathematically linear in concept), I do wonder if a more 'symptoms-led' methodology around analysing people's reactions to PMR / steroid tapering would be worth some thought?
More of a 'Symptoms-led' approach has helped me when struggling with the (even loose) maths of steroid reduction vis a vis managing PMR symptoms: but it does require a different thought process for those of us who are tempted to 'stick to the plan' at all costs. I'll be interested to know others' thought about this.
Hope this helps
MB
Most of it has been said. Don't be in any hurry to try the next reduction - even if it is only 0.5mg and done as DSNS! Your adrenal glands can take a long time to catch up.
That has helped me as well, I started on 15mg in April, down in 2 weeks to 10mg with a flare up! Back to 15mg and going down slowly, now on 12mg for 2 weeks, some pain back but so very tired again! I am working and falling asleep at work! I am meant to go down to 11mg today, but think I will carry on with 12mg for another week and see what happens.
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