Taper again: Hello, I have been strugglng for a... - PMRGCAuk

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Taper again

Southmead profile image
13 Replies

Hello,

I have been strugglng for a over couple of weeks with a sinus infection. My doctor prescribed antibiotics. Which seemed to have cleared up the infection. However one the symptoms of the sinus trouble, was fatigue. I still have the fatigue, and I don't know if its still the infection or a PMR flare?

I'm currently on 5mg of Pred a day, but living with this deadly fatigue everyday is killing me, I'm not sure what to do. If I were to increase the Pred, what does the team think the dosage from 5mg of Pred should be? Thank You..

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Southmead
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PMRpro profile image
PMRproAmbassador

The fatigue is probably a result of the infection dragging on because you are also at a low dose of pred which isn't entirely covering the adrenal insufficiency that results from long term use of pred. Normally when you are ill the body normally produces a boost of cortisol which helps the body recover.

Did you increase your pred dose while you were ill - in line with what are called the Sick Day Rules?

Southmead profile image
Southmead in reply toPMRpro

No I didn’t increase the pre, stayed at the 5mg..

PMRpro profile image
PMRproAmbassador in reply toSouthmead

I think that probably accounts for the protracted fatigue rather than it is a flare, It is a stage you have to plug through I fear - the only thing that encourages a return of adrenal function so it produces a top-up of the lower pred dose as you taper is a low level of pred in the body. If you increase the pred dose, yes you will feel better but you are going to have to go through the fatigue at some point.

There are good explanations in the FAQs, the link is just below your post at the top of the thread.

Southmead profile image
Southmead in reply toPMRpro

Thank you, it helps knowing what’s probably causing the discomfort..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Would say adrenals struggling rather than PMR as such -partly due to dose of Pred plus the extra stress of trying to cope with virus -maybe have a look at this -

healthunlocked.com/pmrgcauk...

if you can cope, I’d be inclined to stay at 5mg and hope they catch up - many have been there and got through it, but we know it can be very unpleasant at the time.

Southmead profile image
Southmead in reply toDorsetLady

Thank you, unpleasant is the word, and it’s quite debilitating..

SheffieldJane profile image
SheffieldJane

I have had the deathly fatigue for so long now, I feel almost ashamed to tell people. I try to plough on regardless. I have joined a 24 week joint pain programme at my local gym. This has involved being taught how to use gym equipment and then the second day was circuit training, next week there will be mat work and Aquarobics. This is completely free and you can use anything in the gym for free including the pool. What has surprised me is the impact it has had on the deathly fatigue, I am definitely happier. I go home after the session and fall into a blissful sleep for around an hour, then I am good to go. It has somehow harnessed a lot more energy. I am sleeping better at night as well. It is making everything feel more manageable somehow. Like I have rejoined the human race. This is after around 8 years of PMR and then GCA/LVV. This is only week one (😂) but hope springs eternal. Everyone is our sort of age with something that is causing them significant pain.

Rugger profile image
Rugger in reply toSheffieldJane

Wow! Your gym sessions sound to be a lot more varied and adventurous than mine, which were all studio based. The only equipment we ever used was a set of weights 🏋️‍♀️ (I could manage only 500g in each hand!) and we never got down onto a mat! 🤣 I did use the pool, but in my own time. 🏊‍♀️

I hope you continue to gain real benefit from the programme. 🤞

SheffieldJane profile image
SheffieldJane in reply toRugger

Thanks Rugger, you too. I am not a great lover of machines, they tend to go wrong when I am around. X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRugger

Getting down is the easy bit -it’s getting back up again! 😂🤣

Rugger profile image
Rugger in reply toDorsetLady

Exactly what I was thinking. Rather Jane than me! 😉

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRugger

Well my excuse is too many replacement joints . I can get get up, but it’s not very elegant..🤦🏻‍♀️

PMRpro profile image
PMRproAmbassador in reply toRugger

It's the optimistic physios handing out exercises to be done on the floor that get me! At home as well ...

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