fatigue

18 months in and on 8 mg. When can I expect some relief from the fatigue? It seems like it’s getting worse not better.

[piglette]

You are just getting to the point where the adrenal glands have to start doing some work again. Sometimes they are none too keen and the deathly fatigue can come along. It is normally around 7mg though. Fatigue is part of PMR anyway.

[SnazzyD]

Hello from a sleepless person in the UK. Provided your PMR is quiet, you’re otherwise well and that you are not over doing it, it is likely you are entering the dose range where the adrenal glands need to start working. I was promised that under 10mg I would, “start to feel human” by the doctor. This all depends on whether your adrenal glands which have been switched off due to being swamped by Pred, need to start to make their own cortisol. I learned the hard way that actually at doses above 5mg but below 10mg, it is an awkward level where the Pred doesn’t always cover the body’s normal daily requirement for Cortisol. However, the dose is still to high for the adrenal glands to be triggered to work. The only way I got around this was to keep very slowly reducing 0.5mg at a time over weeks. Eventually, the body noticed I didn’t have enough cortisol and the adrenal glands started to work. It took me months and months but we are all different. Some people get through this without issue and some make heavier weather of it. There’s no quick fix for it, just time. If you are low in cortisol you can feel terribly tired with no go at all. Do read from the link below from Mrs Nails’s FAQ’s as it is essential reading for those dipping below 10mg Pred. Come back with any questions.

healthunlocked.com/pmrgcauk...

[Hidden in reply to SnazzyD]

Thank you two for answering in the middle of the night. Always good info here.

[PMRpro Ambassador in reply to SnazzyD]

Snazzy - 3 lines from the bottom - there's NO quick fix ...

[SnazzyD in reply to PMRpro]

😱 amended

[PMRpro Ambassador in reply to SnazzyD]

Ta!!!! Don't want anyone getting the wrong idea!!!

[PMRpro Ambassador]

The fatigue is part of the autoimmune disorder and not affected by any of the medications used. Then when you get down to about 8mg pred, adrenal function starts to be a feature. It is suppressed in terms of producing cortisol at higher doses of pred - and now the body needs to top up the pred to the level it needs to function well. That can take time and in the meantime, fatigue may well get worse.

[Gimme]

I would love to know the answer to this too. And I am just the same. I feel more ill now than I did 6 months ago.

[PMRpro Ambassador in reply to Gimme]

You have chosen to taper very quickly - that is your right of course but if that means you are on a lower dose than what is required to manage the inflammation, you are likely to feel worse when it may also be in combination with poor adrenal function.

[Gimme in reply to PMRpro]

Well "choose" might be somewhat relative. My reaction was so extreme to anything above 10 mg that I was told by my doctor to drop quick and when I saw him again a week later, he told me to drop again. Another day of how I felt on 15mg and I would have either flushed the whole lot down the toilet or thrown myself out of the window. I diddled along quite nicely on 7.5 mg and then 5 mg, until the problem with my eyes and my doc told me to increase to the highest I could tolerate and when I increased the dose was when all the fatigue and feeling ill kicked off. But on balance, I feel a lot more ill on pred than I did without it, but it does control the stiffness and pain. I did have a question about the adrenal thing, considering that I have never been on a high dose for long, but writing this has pushed me into a tearful poor me moment, so that will have to wait for another day.

[PMRpro Ambassador in reply to Gimme]

Maybe relative - but it is what has happened and if you are on too low a dose for the inflammation - you will feel bad ...

[Gimme in reply to PMRpro]

I wish now that I had never started the pred in the first place. Anyway, I am going to step away now.

[Gimme in reply to PMRpro]

Thanks, yes, you may well be right. I actually ignored the rheumatologists advice to cut down by 1mg each month after the first couple of months, as the GP wanted me to increase when the eye thing cropped up. After that, I've been on 5-6 mg for months, except for the brief excursion back up when I was waiting to see the opthalmologist. I have not been able to cut down. Though I was going by the pain and stiffness, not the tiredness. The tiredness didn't go when I increased. It got a lot worse and stayed that way. I've been thinking about the rheumatologist and I wonder if he wanted me off the pred because my markers aren't raised. Though he didn't say that. Unfortunately, the sheet of paper with all the doses and notes has gone AWOL, so I will have to try and reconstruct the dates from my diary, before I can have a meaningful discussion about it. I'm a bit stuck with the higher doses though, because of the anxiety and PTSD. Both the GP and rheumatologist are aware of that and know that I find it really hard to tolerate the pred. I've lost my way a bit with it all now. I should have been sent a follow-up appointment with the rheumatologist weeks ago, but there is a GP who is a rheumatologist at the surgery and he seems keen to take over my care. I'll have to wait until Monday before I will be able to put in a request to see him and I daresay that I will have to wait a bit to see him as he is quite popular.

[Blearyeyed]

Unfortunately Fatigue is one of those symptoms that is hard to pin point.It can come and go at various doses , and can often feel worse at the lower doses when the Adrenals haven't started to work as well to help your release of enzymes during times of more active need.

But Fatigue at any point in your treatment is subject to factors too. These can include Increased Stress ( not just bad things but any activity either mental or physical that your body or brain can't cope with at its current level of health) Effect of other health issues, side effects of medications, infections or allergies, reduced mobility, internal dehydration , vitamin and mineral deficiencies and the effect of diet and steroids on your insulin resistance or sugar balance, interrupted sleep patterns.

Often , unlike tiredness , Fatigue needs careful management to stop it becoming overwhelming, It helps to look to see what you were doing in the week prior to a flare of Fatigue to know what lifestyle, activity or diet options may have added to triggering it.

Often it can help to do a little gentle physical activity through the day like a few minutes stroll or a few light stretches in a chair to prevent the Fatigue from having an effect on your overall activity and energy levels.

Even though at first even just a little movement may feel uncomfortable or like trying to walk through wet cement.

You start at the amount of movement you can cope with and then find as the Fatigue begins to reduce that you can increase that activity by little amounts which you can keep up consistently each day as part of your self care and Fatigue prevention.

Getting a little fresh air and sunshine each day can help , even if you just sit by an open window .

Drinking the recommended water each day also helps Fatigue, even if you don't feel thirsty.

Get your vitamin B12, Folates, VitD, Sodium , Potassium and iron levels checked with blood tests at the GP just to be sure your nutrient levels aren't low or Deficient and adding to your Fatigue is very useful and can be requested by you.

Then you can increase these nutrients in your diet and have supplements if you need them.

Reducing processed food and sugar , eating smaller portions of complex carbohydrates instead of the " white carbs" , eating more protein and a varied amount of vegetables and fruit also helps to reduce sugar spikes and improve insulin release whilst taking steroids and getting that balance right also reduces flares of Fatigue.

Have a look at your sleep routine and your bedroom , creating a sleep pattern that helps you to relax your body comfortably in bed even if you have difficulty getting to sleep or your sleep is interrupted can have a huge effect on your daytime Fatigue. If you nap in the day , use an alarm so that you don't nap for longer than one hour and make sure you do get up and move a little when the alarm goes off.

Finally , balancing your day and pacing yourself , between rest and activity,both physical and mental can stop swings between action and fatigue .

Using breathing techniques and relaxation and brain training exercises can also increase your energy and reduce Fatigue,

Looking out for External triggers and environmental stimuli helps ( weather. Temperature in your rooms, comfort of your chair or bed, noise, light , family activity). You can identify what brings on Fatigue for you and then adapt your activity or avoid these things. It makes a big difference to do this, whether you have an illness like PMR or not .

Keeping a diary of your pain and fatigue levels alongside what you do for a month can help you pinpoint the Fatigue triggers.

[FRnina in reply to Blearyeyed]

Thanks for lengthy post. it's so important to keep rereading info as a reminder. Acceptance is probably the hardest part of this illness (5.5 years for me and counting). Gratitude as always for all the contributors- don't know how I'd get through without you all.

[HeronNS]

Has your doctor run the appropriate tests? I complained to my doctor when experiencing the "deathly fatigue" (incidentally at about 4 mg) expecting her to investigate adrenal function. She didn't do that, but did check other things, I only remember what she came up with, my iron was low, but I think she checked thyroid among other things, and that was normal. You say you've had fatigue for some time, and possibly it is related to the autoimmune condition, but it's probably worth ruling out other things in case, as was true in my case, there is something else treatable going on. I can't say that I became the Energizer bunny after taking an iron supplement, but it certainly didn't hurt and it was also good to know that there was no other significant reason for fatigue.

The rest, as the others say, is dealt with by pacing (enough rest after every period of activity) looking after yourself generally with good diet, exercise, etc., and the passage of time.