fatigue: I have got rid of the sinus and stomach... - PMRGCAuk

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fatigue

kingharold11 profile image
13 Replies

I have got rid of the sinus and stomach problem that I have had (see below) however I am left with overwhelming fatigue. I am on 5mg pred a day which is what my rheumatologist has told me to do until April but I am totally knackered (sorry) all of the time. Wendy

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kingharold11 profile image
kingharold11
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13 Replies
PMRpro profile image
PMRproAmbassador

Wendy - why apologise for using a term I bet we all use - and it expresses it wonderfully doesn't it!

Were you so tired before the infection too? And how fast have you got your dose down to 5mg?

You won't deal with infection quickly anyway and it will have taken it out of you - give it a few weeks to recover.

On the other hand - if you reduced quickly from about 10mg down to 5mg it could well be that your adrenals producing cortisol has not yet caught up. It is said it takes up to a year even after getting of pred altogether before the system works properly - it isn't just the adrenal glands themselves, it is the whole system involving hormones and other glands. An indicator of that can be extreme tiredness. That is part of the reason for very slow reduction helping below 10mg - your body makes the equivalent of about 8mg/day - below that your body has to stage a return to work.

kingharold11 profile image
kingharold11 in reply toPMRpro

this time last year I came off preds totally, a doctor at the hospital wanted me to have a short synacthan test which i had last April I had to be off preds before they could do it, the result was that they said my adrenals were working. Immediately after PMR came back with a bang so I was advised to go back onto 15mg for a week then 10 mg for a week and then onto 5 mg. This sounds horrendous I know but it worked, I was tired all of the time but no worse than I am now. the pains went away and I haven.t really had any since only fatigue and dizziness most of the time. Wendy

bowler profile image
bowler in reply tokingharold11

As a matter of interest, how many years have you been on Prednisolone ?

kingharold11 profile image
kingharold11 in reply tobowler

since May 2011

bowler profile image
bowler in reply tokingharold11

Nice that your adrenals are still working, I have been taking steroids for 14 years so I dont think i would be so lucky, however I have never been offered a test, probably because I have never been able to come off of the Prednisolone to get the test done.

good luck

AkselOlsen profile image
AkselOlsen in reply toPMRpro

Do I make about 8 mg/day if yoy weigh 60 kg (wish I was!) or 90 kg??

PMRpro profile image
PMRproAmbassador in reply toAkselOlsen

How much you make is more related to your lifestyle funnily enough - lots of stress, lots of cortisol! Normally, it is highest about 8am, shortly after waking, and lowest between midnight and 4am - that is what triggers the release in the early hours to prepare the body for the day. All sorts of other things stimulate the production of more: coffee, trauma, extreme exercise, sleep deprivation, very low calorie intake - and obesity.

AkselOlsen profile image
AkselOlsen in reply toPMRpro

Interesting, thankyou!

mickt profile image
mickt

I have addisons disease as well as type 1 diabetes and gca pmr,I normally take hydrocortisone for addisons and fludrocortisone .Im on 20 -15mg alternative day reduction for 2 weeks then stick on 15 til I see rheumatologist in another 2 weeks.My Rhuemi has stopped me taking hydrocortisone for addisons as he says all the pred in on will take its pace.I suppose there will come a time when im on lower dose of pred they will have to put me back on hydrocortisone for addisons.I too get fatigue badly as most do with these illnesses.

mickt profile image
mickt

sorry im on pred reduction 15-20 ,im also on methotrexate.

trish29 profile image
trish29

Hellokingharold 11. Let's hope you are feeling better this morning .The Fatigue is so hard to live with . It seems that you have had a virus type infection . I have been fighting one for 3 weeks now and on top of the pain life has been unbearable .I have been toing and froing to my GPs surgery and seeing different Doctors every time being made to feel very inadequate because I can't get down on the Prednosolone and I had to go back up to help cope with the Virus. Anyway I think that the Virus is coming round in full circle because on top of everything else I have gone down with a urine infection and have been given a 5 day course of Antibiotics and I already feel better this morning but the Exhaustion is still there .I am now back to 15mg pred and will stay there for a while until I feel that the virus has gone ..My GP made me feel guilty that nearly 10 years on I still have PMR and once again said "You must get off the steroids - blah , blah , blah ". I wish I could prove to these Medical People that the PMR is not in my head and I don't enjoy the Flare - ups. Everybody is busy around me all getting on with what they have to do yet I'm too tired to even get off the bed sometimes. Thinking of you and hope the Exhaustion lifts for you . Trish 29

jinasc profile image
jinasc

trish29

Can I ask this question, which might sound stupid.

Whilst on your pred, have you been reducing by more than 10% at a time, then experiencing a flare, going back up and then coming down quickly - in other words yo-yoing?

trish29 profile image
trish29 in reply tojinasc

Hello sambucca..no I have only been reducing half a mg a month as to my Rheumatologists instructions . I have Definetly had a Virus because I have had a lot of giddeness with it and also a lot of sciatic type pain in my spine and down my left buttock , thigh and leg . My GP now feels that I may have Myofascial Syndrome and that's why I can't get down lower on the pred . Let's hope they will get some tests done for that once that Virus has gone completely. Info feel better this morning so that Antibiotics must be doing something. I'm still waiting on a Pain Clinic getting in touch. I know about the slowly ,slowly motto to reducing but it all comes down to how you are feeling on reduction week . Thank you for caring Pat ( Trish 29 )

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