I've been doing very well in the last few months, slowly stepping down. I'm at 3.75mgs of methylprednisolone -- I have to cut the pill to do this, but this has helped to make each taper easier. However, I've been having some odd symptoms lately and hoping others may shed some light... First, let me say, I'm have no return of pain, which is great. But, a couple nights a week, I wake up in the middle of the night anxious and nauseated -- I get a drink of water and try to fall back to sleep. When I do finally get out of bed in the morning, I feel "hungover" is the only way I know to describe the symptoms -- woozy, light headache, slightly dizzy and nauseated. I take my medicine right away (although in the past I could wait for an hour or so after rising). Some days, this feeling passes within a few hours. Sometimes it diminishes, but never leaves. But, this doesn't happen every day. Half the days in the week, I sleep through the night and wake up feeling great. The inconsistency is so strange. And I'm not sure if I should continue to taper or stay here. I will also note that as I got to 6mgs, I started to lose my hair -- and that symptom has continued. I had bloodwork done Monday, pending those results. Just wondered if anyone here had any thoughts or suggestions. Thanks!
Question about symptoms: I've been doing very well... - PMRGCAuk
Question about symptoms
Sorry -- that should read 3mgs -- not 3.75 -- apparently I'm having some brain fog too! It is basically 3/4 of a pill.
Hi sanRaphaela, I think it's reasonably common to get anxiety on lower doses. Someone asked a similar question the other day. Have a read if the thread then ask anything that isn't covered. Others will be along too no doubt.
Hi
Some of the symptoms you describe could be due to Adrenals not up to speed as yet. Might be worth asking for a Synacthen Test just to check they are capable of working - doesn’t show they actually are working - just able to.
Hello DL. When I was having some of these symptoms when on a slow taper from 8.5 to 8 you suggested it might be the adrenal glands trying to work, & to go back up to 8.5 for a couple of weeks. I did this & felt much better & am now getting on much better with the slow taper. (Thanks for your advice). I don't feel I enough knowledge to advise SR, but is going up a level of pred at her level of pred likely to help & a good idea.
Hi,
Yes it may be, it’s always worth a try.
As, has been proven many a time, and often quoted, just a 0.5mg can make a significant difference.
As can simply waiting a few weeks and trying again. It will work eventually - patience is key in PMR.
...and you know that more than most 🤦🏻♀️
In had much the same from about 7mg, not at night, but definitely in the mornings and often about 5pm. After being a morning lark all my life I felt hungover and disinclined. It was like that every day but became less so from 3mg where I think I hit my ‘sweet spot’. At 1mg I’m now feeling a bit half baked again. I had my second hair fallout during my worst adrenal phase last summer.
As DL says many of these symptoms can happen as your Adrenal System is taking over from your steroid dose.
You can have Anxiety ' like' feelings , wooziness , headaches and some sleeplessness and palpitations as the Adrenals adjust and sometimes do not produce enough Adrenaline for your needs , or , have little unprompted Adrenaline spikes because the Adrenal system has not settled in to regulating itself yet.
Increasing your fluids , especially drinking a cool drink of water if you are feeling Anxiety and no Pain , is important , as us using the methods you prefer to relax like Breathing Techniques or Relaxation Exercises.
Reading the link Poops sent will be useful for you , and getting the Synacthen Test DL suggested will be good for you too.
You should also request to have some Thyroid tests done if they weren't included in your recent bloodwork , as things like hair loss and these symptoms can also be linked to Thyroid issues.
Take care , it sounds like you are doing well , and give us an update when you know more .
Do you have any sensation of palpitations during those nocturnal episodes?
No, no sensations like that, thank goodness. And most gratefully, no pain.
Most likely adrenal function then.
Thank you all for jumping in an reassuring me. The blood draw Monday included thryroid, so we will see. But it does sound like adrenals. I'll reach out to the Dr. for the Synacthen Test too. Seems like my symptoms are consistent with what others have experienced.
Hi SanRaphaela, I have been having similar symptoms which I put down to the adrenal glands. My GP does not seem very interested. I feel rough and spaced out!
Hi, I wake up like that sometimes, just off. Slightly dizzy, cement head, nauseous. Off balance when I stand. I think having PMR is like trying to stand on a basketball bcuz of balancing all of the various factors. I recommend asking yourself if you had a strenuous day before and did you hydrate well enough. Sometimes I just sit on the edge of the bed, pump my heels up and down to get my lower circulation going, take slow good breaths, and stretch. Then get water and coffee while keeping my head level.
Hope it passes soon.
Thyroid is normal. Dr didn't feel Synacthen Test was warranted just yet. I'm happy to report that I'm doing much better since the weekend. Apparently, my adrenals have kicked in enough now. Thanks again for the information and reassurance.
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