Hi wonderful PMR/GCAers!
I’m successfully tapering g down using the DSNS schedule. What I am experiencing is a strange slump in energy/go pale/feel drugged/ episode every day. It starts roughly an hour to an hour and half after I take my single dose of Prednisolone. It lasts for about 20 to 30 minutes. Does anyone know anything about why this might be and have tips to deal with it? Thank you so much x
I'm no expert and others, with more experience, will be along shortly. However, I have struggled between 7mg and 5mg three times now and part of that involved your 'energy slump.' Twice I also had a flare - the third time no flare but just that horrid drugged feeling and the deathly fatigue. I am now decreasing .25mg at a time and hoping to creep past this level and reach 5mg where I shall rest for a while. So far so good and am at 6.25mg.
I have also started taking slippery elm powder for IBS, principally, and it seems to help but I did read in one article that it was thought to help with adrenal function. Whether that is true or not I have no idea but I do know that I have plenty of energy at the moment - sometimes more than I expect. Time will tell - I am keeping my fingers crossed.
Good luck and wait until PMRpro or DorsetLady come along as well as many of the others.
Thanks Misere! That’s helpful to know. To have extra energy is such a gift. Hope you continue to do well with the Slippery Elm.
Would normally say it’s your adrenals stuttering at this level - see link - and slow taper, small steps and time will resolve that.
healthunlocked.com/pmrgcauk...
As it coincides with taking Pred, have you had this effect at any other dose?
Yes I had much more of them when I was on 60 mg. Then it was a much more pronounced drugged effect.
Can fully understand getting them at 60mg -so maybe it’s a combination of both things then.
Wonder if taking Pred either just before bed or if you wake up during the night might help. Then you’d sleep through that 20-30 minute phase. Trouble is, if everything else is okay, you don’t want to upset the apple cart by changing routine.
Maybe just see if you can get through it -might just be a temporary thing as body adjusts to new lower dose.
Sometimes it just a suck it and see situation.
It’s a tricky one. So the exact timing suggests it’s the Pred getting into the system. I certainly had that issue but from day 1 of taking Pred and it got better with lowering the dose since it was a direct effect of the Pred being at its highest in my bloodstream. I would expect therefore that if this is new on a lower dose it isn’t the Pred. Your post suggests that it is a new phenomenon that has occurred at a dose below 10mg. slumps due to to adrenal insufficiency tend to come either randomly, after a burst of activity /stress or some people get their regular low points in the day. If say, you take your Pred early and then do something active, it might be the Pred isn’t getting through soon enough for your body to cope when your adrenals can’t.
If this is a new thing, perhaps your symptoms are due to your cortisol level being very low by the time you take your Pred and that your Pred hasn’t hit its peak yet. Perhaps change your time by an hour or so and see if it shifts the timing of these feelings. Or if some activity is being done, try avoiding that and see if it helps.
Thanks so much. You’ve given me lots to think about. I altered my timing today because of helping at a birthday party and the slump indeed did occur earlier.
So it is more Pred linked?
When I got to low doses and didn’t have the drunk feeling with Pred any more, I could still feel it ‘coming in’ from the sheen of sweat on my top lip or forehead and a vague light headedness if I thought about it.
Did it happen at the higher doses too?
Like Snazzy, I had a strange effect a couple of hours after taking prednisolone if I was trying to do a bit extra - if I was at home doing nothing much I was fine. If I had headed out to do food shopping (about all I ever did!!!) I'd feel very dizzy and unwell. I just made sure I didn't try to be more active in that time window. Back then I was on just under 10mg and still able to taper so it could well have been adrenal-related. However, some people experience it with the pred entering the system.
Yes PMR pro , I remember strange slumps whilst on the much higher doses 60 and then 30 mg.
Always? I wonder if brand of pred may also play a role - different fillers in them.
This has happened to me so many times while tapering. I find it especially at 7mg and I have found the only thing to do is just go with it while it lasts. Trying to work through it doesn't work for me. It happens about 30 minutes after taking Pred. I now just settle down with a cup of coffee and a crossword and let it take its coursel. The fatigue usually wears off after about an hour but I usually try to have a quiet day and not push myself too much. I am currently tapering again and am now down to 8.5mg so I expect to be in the same situation again in a week or two. Good luck with your situation. I can only say that it does go away eventually.
Thanks so much for that! It’s such a weird thing but it helps to know that it’s just part of the tapering process. Interestingly it didn’t happen at all today and I had a super active day celebrating my son’s Birthday. If I get a few more days without it, I might be game to say that I am adjusting well to the 6 and 5.5 mg mix.
Something else that you might like to think about it. Could it be related to when you eat in the morning? For example, could it be that you eat at the same time as you take your pred and it coincides with the slump you can get from raised blood sugar? If you have a sweet sugary cereal for breakfast, it may be as simple as a dip in your blood sugar after the initial sugar rush, when the insulin kicks in. Or alternatively maybe that you just need to eat, if you haven't already? For myself, I try to keep my meals evenly spaced, since I have been taking pred, and most of the time, I manage to keep to a low carb diet. I try to keep my blood sugar on an even keel, but I am often at a low ebb first thing in the morning.
I have gone from 15mg daily to 7mg 3 times but my symptoms started to come back.
I am now back on 8 mgs but I cannot
Understand why 1 mg can really change the side effect profile. This does not make sense to me. Anyone got advice?
I'm sorry, I don't understand your comment: "I cannot Understand why 1 mg can really change the side effect profile". What you are asking about isn't anything to do with side effects.
You are not reducing the dose of pred relentlessly to zero. You are undertaking a process called titration to identify the lowest effective dose, the lowest dose that gives the same symptom relief that the starting dose did. For you, this appears at present to be 8mg, possibly 7.5mg if you had tapered in 1/2mg steps. 8mg is enough to control the inflammation created by the daily shedding of cytokines in the early morning, 7mg is not,
Once you go below this lowest effective dose, the inflammation that isn't mopped up starts to build up again until it gets to a level that causes symptoms. You don't usually need to go back to the starting dose - just to the last effective dose, possibly with a few days at a higher dose to clear things out. Pred has cured nothing, it is a management strategy to deal with an ongoing inflammatory state to allow a better quality of life with less pain and stiffness until the underlying autoimmune condition that creates the inflammation burns out and goes into remission which may take anything for a year to 18 months to several years - half of patients need up to 6 years, the rest of us need even longer.
If you’ve struggled at 7mg three times-then that is telling you that’s not enough.
It’s very possible that 8mg is enough to control your illness - and 7mg isn’t.,,
You are not relentlessly reducing to zero, you are lowering your dose to ascertain the correct dose that gives you same relief as initial dose did.
Suggest you return to 8mg or 9mg and then reduce much more slowly -preferably only 0.5mg s time and maybe using one if the slower tapers we talk about. See here -
Half mg Pred
feet problems - on 3 mg Pred
5 mg Pred
Reducing from 6 mg to 5 mg
UGH...UP TO 60 MG PRED
