Fatigue at 7.5 mg prednisone

[barbthy]

I have been slowly decreasing since June, started at 15 mg now going between 8 and 7.5 mg. I feel absolutely wiped out - could fall asleep standing up. Minimal pain but oh so tired. Should I stay at the 7.5 or what?

[PMRpro Ambassador]

I'd say yes - until your body catches up. How fast had you been reducing?

[barbthy in reply to PMRpro]

I've been reducing 0.5 mg / month

[SheffieldJane]

I felt exactly as you do when I reached that dose. Now I get days like that but better days too. I am assuming that my Adrenal Glands are (sluggishly) being required to start working. I got more out of my days when I factored in an afternoon nap, whether I wanted one or not. I didn’t increase my dose because I figured that I would have to face it sooner or later, it was tempting.

[Celtic PMRGCAuk volunteer]

barbthy, as you say you are going between 8 and 7.5, if it were me I would stop the taper at this point and return to 8 remaining there to see if the fatigue improves. The sooner, the better to make sure it nips any potential lurking inflammation in the bud although I would hazard a guess the problem points to those adrenal glands trying to kick back in again with their cortisol production having been suppressed by Pred. Rest as much as you can at the same time.

[markbenjamin57]

Hi barbthy

If it helps:

Yep, in my experience the DFF (Dreaded Deathly Fatigue) is a common experience at the best of times with PMR and when reducing the Preds - and especially at these lower levels.

As the others have said, it's possibly a combination of your having reduced a little too quickly / by too much, and / or a multitude of other factors that can put extra 'load' on a struggling adrenal system, e.g. injuries, infections, viruses, weather conditions, Stress, over-activity (in the PMR context).

And just to throw another variable 'spanner' into the woks, it has been suggested that the apparent random variability of PMR disease course and symptoms (the 'cycling' effect?) can affect symptoms too - regardless of our best efforts to manage them with steroids (e.g. DSNS or its equivalents), diet, etc. No wonder it's hard to make sense of Cause and Effect sometimes!

Again, and as the others here say, the best remedial action is probably either to sit-it out and rest up for a few days (if you can bear it!), or nudge the Pred dosage up a little to compensate. Either way, don't try to fight the DFF. As I well-know, it's the body sending you a message that it needs to REST...

Co-incidentally, I've also had the DFF this week - first time for ages although now at 4 mgpd. I put it down to my body's energy battery being 'drained' after the exceptionally Cold Snap in the UK + a hint of the flu (fluey-type symptoms) thrown into the equation too. Oh well.... On, and Forwards.... (or is it Sideways?)

On the positive side, you seem to have had a relatively speedy journey in reducing the Preds to where you are now (9 months?), so be patient and hang on in there. Things will improve...

'Uncle' MB

Dx PMR April 2015, Started on 30mgpd Pred, now oscillating between 2 and 5 mgpd (all depending.. !)

[Retailmonkey in reply to markbenjamin57]

If you are a crab is sideways forward?

[markbenjamin57 in reply to Retailmonkey]

I suppose it depends what type of gradient you're on...

[Charlie1boy in reply to markbenjamin57]

Yes Mark, I, too, am still experiencing bouts of DFF. You'd have thought it would have started to go away by now, but not so!

Seems quite a big gap to be oscillating between 2 and 5mg. How does that work for you?

Best wishes

Paddy

[markbenjamin57 in reply to Charlie1boy]

Yep Paddy, the DF seems to have a mind of its own sometimes. I had 2 days of it this week (despite staying at 5mgpd) but it's suddenly lifted today and I feel TOTALLY different - and that's at a cautious 4 mgpd.

I was down to 2 mgpd after Christmas but the pain / stiffness was creeping back gradually. So I upped to 4, then 5 and it seems to have done the trick. As the others say, it's a balancing act between gently reducing and 'toggling' back up or staying at a plateau if the symptoms are returning.

I've read a few times here (from the Aunties etc) that if you need to increase the Pred dosage temporarily to control a flare (for what ever reason the cause), it should be easy-ish to reduce back to the pre-flare dose quite quickly. I'm going to try 4mgpd for another week then nudge down to 3, then 2 at weekly / 2 weekly intervals depending on symptoms. Hopefully the warmer, milder weather and some sunshine will help but it really seems a case of Trial and Error at times...!

Best wishes

MB

[Charlie1boy in reply to markbenjamin57]

Totally with you Mark. Think I'd be doing the same if I were in your shoes.

My only explanation is that, as PMRpro once said in a post, PMR is not something that is static; it fluctuates all the time. You try to get it under some kind of control, but it is for ever escaping!!!

Good luck

Paddy

[markbenjamin57 in reply to Charlie1boy]

I think PMRpro's point about PMR disease activity (& symptoms) 'fluctuating' is a key part of the challenge in trying to manage it with the Preds!

I'll keep you posted - try to keep smiling in the meantime

MB

[Dobermanlover in reply to markbenjamin57]

My rheumy told me not to be surprised if I had to stay on 5mg for the rest of my mortal stay. Maybe that was just my personal circumstances, but worth bearing in mind!

[Hindags]

Me too. I've posted about my weird spells starting at about 8.5 enough so I won't repeat it here. I'm with ScheffieldJane. It is tempting to go up a bit. I've resisted because I'm thinking I do need to "face it" sometime or other. But I've been using a 38 day taper of 1mg for a while. Now at 6mg at 14.5 months.

[Suedeshayes in reply to Hindags]

Weird spells? What like? Or where will I find it. Thanks. Sue

[Hindags in reply to Suedeshayes]

I know I've said they started at about 8.5, but thinking over the time line, probably more like 9.5.

My spells were of feeling weak and wobbly on my feet sometimes a bit of nausea and low blood pressure accompanied them. (I've had spells of low blood sugar in the past and these were different, though both come with a sense of weakness for me.) These were almost always in the afternoons. Then in the evening I'd feel good again.

Could never figure out what brought them on except time of day and what helped me through them except time. After 8pm I was always ok. I usually just kept busy and stayed going as much as possible through them. I decided it was something to do with my adrenals. Probably not at that Pred level, but even so I kept talking to my adrenals (silently to self) telling them to come on board, get going, etc, like the "Little Engine That Could". Just magical thinking of course.

Then I noticed, somewhere, about two to three months into the Weak/Wobblies that they were smoothing out, not as strong, more like waves. Again the same time in the afternoon, no nausea, not wobbly, and not quite as weak. This was at about 7.5.

Then about 6 weeks ago I awoke one morning feeling altogether too good. A bit charged I would say. Kind of like the charge one can get from higher doses of Pred but without negative side effects. I decided my adrenals had awakened. I thanked them, truly and sincerely and told them they didn't have to try quite so hard.

Slowly since then, those waves have smoothed out enough that I've stopped worrying about scheduling things for the late afternoons. I might notice the time and feel surprised at how even I feel. There are days now that I don't even notice what time it is at that time of day. I'm sure as I type this I will experience "The Return of the Weak Wobblies" . Fingers crossed it won't happen.

I hope this gives you a better picture of what I experienced.

[paulst955]

You say you have been reducing slowly from 15mg in June that is not slow its fast. No wonder you are feeling like you are, if you felt OK at 8mg stay there for some time then try reducing again. The alternative is a flare up and back to at least 10mg, I had a flare at the end of last year and had to up to 12.5 before the pain went away. Please take it slowly.

[Hindags]

15 to 7.5 is good progress. 7.5 mg in nine months is good. And no flares that took you back up....? But if your pain is minimal and if you aren’t feeling the way you did when this all started, I’d guess it is adrenal fatigue and not the PMR that is causing your discomfort. Do you have nausea or low blood pressure too? Adrenal insufficiency can cause those symptoms as well as fatigue.

When I was really confused I had my ESR and CRP retested. I know that 20% of people don’t have a rise in inflammatory markers with a flare, but since my markers seem to be pretty reactive, I thought if they were still normal, they might give me reassurance to stay the course a bit longer and not go back up right away.

However, I’d hedge my bets for now and resist trying to go lower until the picture emerges more clearly. I bet you’ll know if you become inflamed and stiff as well as fatigued. That, for me, would be a sign that I needed to go back up to some higher dosage.

I don’t know how long you had PMR before it was diagnosed, but most of us have the underlying disorder much longer than 9 months.

[Rokerman in reply to Hindags]

Hindags- out of interest, What doseage had you got to when you had ESR/CRP retested and what were the results?

[Hindags in reply to Rokerman]

I thought I posted this reply several days ago. Sorry to be late with this answer. I have had my markers tested whenever I was about to plan a taper. My rheumy believes in monitoring them closely. She has a standing order at the lab, so I've actually gone there if I've felt off and unsure of how to proceed even if it isn't taper time. I always email my rheumy and explain why....

My markers have stayed low except for one flare at 14.

[PMRpro Ambassador in reply to Hindags]

The 20% not having markers that are "out of range" is ever - far more people don't find markers rising while they are still on pred.

And when I say "out of range" - you can have levels that are perceived as normal because they come within the range found in a large population of healthy people. That doesn't mean it isn't raised for YOU. My normal is 4-ish. It did reach 18 during a really severe episode 6 years ago. But no-one commented because it was still "within normal range" which ranges from 20 to 30 depending on the hospital.

[Hindags in reply to PMRpro]

Thanks for the clarification. I was running 20s-low 30s the last few years before PMR. At diagnosis my ESR was 107. After about a month on Pred it was well within the "normal range, but it was back in the 40s and rising fast in April of 2017, 4 months into treatment. CRP was rising pretty dramatically too. I wasn't sure it was due to a PMR flare, but things resolved after going up for a bit.

Since then they haven't budged, for whatever that signifies in terms of PMR.

[PMRpro Ambassador in reply to Hindags]

I wonder if you had a burst of the autoimmune disorder? But CRP will go up with chest problems - and ESR will shoot up with anything just about!

[Hindags in reply to PMRpro]

I'd had several sties but nothing else. I still had some shoulder pain that felt like the old PMR but no stiffness. Yet two weeks in a row it kept rising from the post pred onset lows. It set me back a bit in time, but soon afterwards, I felt a shift, as if the autoimmune disorder had calmed down. Can't say exactly what I felt, except healthier in some way. That hasn't changed even with accumulated aches and some growing exercise intolerance at my new, lower Pred levels.

An interesting journey. Are you familiar with the NOI Group out of Australia. Their mission is to explain pain, especially chronic forms of pain. I think of their work quite a bit as I cope with the various pains related to PMR and aging. You can find some of their talks on You Tube.

Thanks for the reply.

[PMRpro Ambassador in reply to Hindags]

Stick a good link up...

[Sandradsn]

I asked my GP why I feel so rough and wiped out.She looked at me and said 'Because your body has inflammation in it still ' I'm on 5mgs,I have good days when I feel fine and days when I feel dazed, fatigued and spaced out.

[powerwalk in reply to Sandradsn]

crikey my GP never acknowledges anything I say to her about fatigue! Very annoying to say the least when I'm barely functioning.

[Sandradsn in reply to powerwalk]

I changed GP as previous one was a little vague😳New GP seems to have experience of PMR👏👍

[Hindags in reply to Sandradsn]

How does your GP know whether the fatigue is from PMR inflammation or adrenal insufficiency?

[Sandradsn in reply to Hindags]

Good question,I don't know!🤔

[PMRpro Ambassador in reply to Hindags]

They can't really - although PMR inflammation would usually also be accompanied by other PMR symptoms that aren't typical of poor adrenal function.

[HeronNS]

Sorry, I'm a bit late to this conversation, just seeing it today. When I started 7 mg, after about the same length of tapering as you, perhaps slightly shorter time, I felt like I'd been hit by a truck. It took some time, and I am not my old self yet, two years later, but at least I can function now. You may want to slow down the taper even more, although your rate seems to be a very good one. As long as you don't have PMR pain as such I wouldn't think it a good idea to increase the dose as you really want your adrenal glands to start to respond, and they won't wake up if they don't need to. I find I still, after all this time, need to rest at least the same amount of time I've been active. I even find a pleasant social time with friends, just having lunch perhaps, wipes me out for hours. It took a while for me to accept that this had to be my new normal, and now I've worked out how to live this way. I don't know if I will ever get back to my old normal, but I also think my adrenals must be working to some degree as at the very low doses I've managed to reach I think I'd feel quite ill if they weren't. It's just all part of the PMR journey, patience required. And your feelings are normal for the level you are at.

[barbthy in reply to HeronNS]

Good advice, I am also going to physical therapy 2 X week for the C2 neck fracture from auto accident end of August. Try to do exercises daily at home. Can't tell if discomfort in shoulders and back of thighs is from exercise or PMR. But an afternoon nap really helps.

[HeronNS in reply to barbthy]

If that pain gets worse or doesn't ease up over the next few days I'd suspect it's PMR. But if it eases it's either you getting used to your exercises, or it was steroid withdrawal. Either way it does sound like you shouldn't taper any more until you're sure.