Fatigue.

[Seaglassgirl]

I have PMR for 4 years now down to 5 mg ..started on 30 mg but can't get any lower , have felt good on 5 but recently have fatigue and dizziness for most of the day ,feeling better in the evening, do I need to up my dose to cope with this fatigue ? Thank you all .

[PMRpro Ambassador]

The fatigue is because you have reached a dose of pred that isn't quite enough to replace your normal adrenal function. Only sticking it out until the system governing the adrenal gland function wakes up enough to function reliably will get you back to normal. If you were to increase the pred dose again that would just delay the process because the only trigger is not having quite enough corticosteroid present in the body. It is best to taper the dose VERY slowly with long pauses between to give your body time to catch up.

It is strange you felt OK at first though - have you been trying to do more recently? And of course, Christmas is always rather stressful.

There is lots more detail about adrenal function to be found in the FAQs.

[Seaglassgirl in reply to PMRpro]

Thank you for your reply ,I have been on 5 mg for 2 years as wasn't able to get down to lower dose and felt good on that dose untill recently, I think I have been over doing it , cleaning my house so need to rest more as you say and just try and get through it instead of raising the dose ?

[PMRpro Ambassador in reply to Seaglassgirl]

Yes, sounds as if you have been overdoing things - but if you don't feel better with a bit of rest, I think maybe you should speak to the doctor about it. 5mg is a difficult stage - still high enough to suppress cortisol production and not necessarily low enough to start to poke the body to make its own.

[DorsetLady PMRGCAuk volunteer]

Have a look at this - and only way to get through it his slow tapering, small reductions, rest when you need to, time and patience -

healthunlocked.com/pmrgcauk...

[Seaglassgirl in reply to DorsetLady]

Thank you ,yes need to rest more and not push myself , will wait a while to taper .

[DorsetLady PMRGCAuk volunteer in reply to Seaglassgirl]

Really is the slower the better.., and although that can be disappointing it’s the only way.

You will get there

[SnazzyD]

Hello, You may well be suffering from low adrenal function. This is separate from PMR. You need a daily amount of cortisol (a corticosteroid) to basically survive a day in your life. When you are on Pred you are getting so much artificial corticosteroid (Pred) that your normal cortisol producing process stops as it doesn’t need to work. Once you get to somewhere below 10mg you need to start making your own because the Pred dose is below what you need for normal life. Often your adrenal glands are still sleeping and need to realise it’s their time to shine again. Until they get the message, you can feel totally washed out, dizzy, weak, emotionally unstable, sleepy, achey and flat. The only way for your adrenal glands to wake up is to keep presenting them with a call for cortisol. The moment you put up your Pred dose, they can go back to sleep and you’re back to square one with your re-education plan. If you are one of those whose adrenal glands don’t perk up instantly it is a real drag. It was for me but it came good in the end.

It can come as a real disappointment when you are lead to believe that low doses means normality if your PMR is quiet. Do have a read of the link below as all people on low doses need to know about it. This is making the assumption that your symptoms are not due to something els.e

healthunlocked.com/pmrgcauk...

[Seaglassgirl in reply to SnazzyD]

Thank you , yes I felt good on 5 but that all changed a week ago , been a shock to feel so exhausted,will be getting checked with Dr.

[SnazzyD in reply to Seaglassgirl]

Of course you should because it might be something else. If it’s not, what you have to do is slow down to stop your body needing quite to much cortisol until you can make your own adequately. There’s not much point in getting a cortisol test until you’re under 5mg because the suppressive effect of Pred above that can still be significant to give a poor result.

[PMRpro Ambassador in reply to Seaglassgirl]

If it changed so suddenly after a long period being fine, then you do need to get it checked out by the GP. Could be something as simple as a viral infection but it could be something else.

[Merryfield]

Dear Seaglass. Reduced to 5 Mgs methylprednisoline and got very dizzy and nauseated. Nausea went away and most of dizziness. But I slept for three hours yesterday afternoon. Have been fatigued a lot for months, so not sure it is poor adrenal function. Give your body a little more time to adjust to lower dose and best wishes.

[Seaglassgirl in reply to Merryfield]

Thank you , we all need to rest more .

[Ruthie64]

You could splitting the dose. If you have 1mg tablets you could take 3mg in the morning and 2mg in the afternoon. Might help you get through the day better. But definitely get it checked out.

[Seaglassgirl in reply to Ruthie64]

Thank you.. yes worth a try , splitting the dose

[Gimme]

I was stuck on 5 mg for months. I felt absolutely awful for about 3months. The dreadful lethargy and jelly legs made me virtually housebound during that time. Then I did something naughty. I bumped the dose up to 10 mg for a few days, which made me feel even worse, but the fatigue cleared and didn't come back until I got to 3 mg. Anyway, I got a rocket from the rheumatologist when I let slip what I had done, so I don't recommend that as a solution. They don't like it if you yo-yo for the reasons given by others already. It seems like a lot of other people struggle around 5 mg. This time I am toughing it out, meanwhile being mindful of other signs of adrenal crisis, though I seem OK. I've found that I have a couple of hours of energy after my morning pred kicks in and then I flag after lunch and need to sleep for a couple of hours, but once I am fully awake again, I seem to last quite well until later in the evening. So I wonder if you are perhaps overdoing and not taking enough rest?

[Seaglassgirl in reply to Gimme]

Thank you for that information, I felt I wanted to do the same and bump it up.Will try napping in the day and just wait it out . Hopefully pass over soon as it's not a nice feeling ..wish you well.

[Gimme in reply to Seaglassgirl]

I agree, it's not nice. When I was at my worst, I felt really ill with it. But I think it is the only way to kick the adrenals into touch, so you have to get through it somehow. I knew about adrenal suppression long before I started taking pred, but had I fully understood what it might mean for coming off the stuff, I'm not sure that I would have ever started taking it. I seem to be doing better at 3 mg than I did at 5 mg though, so I hope that means that I will get through it OK eventually.