Overwhelming Fatigue

[Sho-Sho]

I am now on 7.5mg of pred having been diagnosed with GCA -August 2016 - I am more fatigued now than in the early months of the illness, if I try to be more active I end up feeling so unwell it's not worth it. I have been tapering using the DEad Slow method by half a milligram over 6 weeks since 10mg which I was at last January. My blood tests show zero inflammation although I know that doesn't mean the arteritis isn't still active. Feeling pretty low at the moment - any comments would be very welcome..

[SnazzyD]

Hello, I had the same around 7mg. I was looking forward to the glories of sub 10mg Pred life but as you said, I almost felt better in the early stages of GCA. Anyway, I felt utterly wiped out, especially by the end of the day when my legs would be like jelly and I’d weep making the dinner. I did get better as I got to about 5mg as the adrenals opened one eye, but I do find my days less predictable.The speed of this bit depends on the person’s response. I also had a Synacthen test which I think helped psychologically knowing my adrenals could get out of bed, I just hope the smell of coffee will make them want to.

[Sho-Sho in reply to SnazzyD]

Thank you so much for your comments - where are you now with your pred dose?

[SnazzyD in reply to Sho-Sho]

4mg for the next few weeks

[Daisychain12 in reply to SnazzyD]

Snazzy bless you for helping to prepare me. I am sure you’ve helped Sho sho too. I am rather dreading that part of the journey and knowledge is so valuable xxxx

[SheffieldJane]

Like you my fatigue has been “ swooning” since I hovered around 8/7 mgs. Of course you know that with any luck our own Adrenal glands are receiving the signal to start working at these levels. I go for a Synacthen Test on Monday to ensure that my Adrenals can still function. No Pred until it’s over. I am on 6 mgs and was diagnosed in March 2016.

Going for a gentle walk seems to help as much as endless unrefreshing naps.

It is very hard not to feel low when you are like this especially if you are by nature an active person. Acceptance does seem to help and a bit of cherishing. It’s another kind of pain.

At least in the U.K. TV seems to be surpassing itself.

[Sho-Sho in reply to SheffieldJane]

Love the word 'swooning' - so descriptive! Good luck with your test would be very interested to hear how you get on.

Thanks.

[SheffieldJane in reply to Sho-Sho]

Well it’s not like normal tiredness is it? It’s kind of “ quick get me a bed!”

[Daisychain12 in reply to SheffieldJane]

We visited our great aunt in a nursing home yesterday. I nearly shoved her out of bed so I could get in. ( not really)

[Daisychain12 in reply to SheffieldJane]

Jane so you have no pred for a couple of days before the test??? I am a bit worried about you. Are you coping? How do you feel?

I envy you Brit tv. Aussie tv is dire and embarrassingly bad. Our channels are rubbish and often the highlight will be the eighth re run of Doc Martin. I think no one in the world does dramas or docos like the Brits. Xxxx

How do you feel? Truthfully now! Xxxxxxxxx

[SheffieldJane in reply to Daisychain12]

No just 24 hours Daisychain. I know your TV is dire. I once watched the whole history of Australia made Holden cars whilst babysitting my daughter’s new born. I daren’t move as he was sleeping and a breast fed baby. Adverts every 5 minutes aargh!

I am ok. Monday might be different with no Pred and a chemical to stimulate my own Adrenals. I’ve been warned that I might feel sick. Not too worried. Thanks for your concern, I’ll let you know.

[Daisychain12 in reply to SheffieldJane]

Yes our tv is shameful and ads every few mins. It’s beyond disruptive. I wish I could help you get through the test. Please let me know how it goes. Good luck xxxxxxxxx

[Hidden in reply to SheffieldJane]

Don't you just love Blackstart Crow? Though I have to watch it twice as I seem to nod off, even when I'm interested!

[DorsetLady PMRGCAuk volunteer]

Been there! Between the level of 6mg down to 3mg, slow taper at 0.5mg like you, the faitigue used to come on, usually randomly- just threw me completely, if it had been after exercise I could have understood it.

It’s just a matter of hanging in in there, continuing what you are doing reduction wise.

Once you get to around 6-5mg, and if you still feel the same might be worth asking for a Synthacen Test to check adrenal are capable of working - bit too high at the moment.

[Sho-Sho in reply to DorsetLady]

Many thanks for your very useful comments, really reassuring to know this is all pretty normal and to be expected.

[PMRpro Ambassador]

This is the stage at which your adrenal glands have to wake up and do their job of producing the body's own corticosteroid, cortisol, for themselves. At doses above about here the body knows there is plenty of steroid available so doesn't produce more - it is excess amounts of steroid that are responsible for the side effects.

Now they have to top up the pred dose to what is needed and that takes time to get right. It is a very complex feedback system involving the hypothalamus, pituitary and adrenal glands and several hormones. First the adrenals have to wake up and feel the prods from everything else and then that balance has to be fine tuned. Even if they are functioning at the top of their game - which is unlikely - it still takes time to get it right. It is sometimes said it takes a month for every month on pred - but that is for short term pred. It probably won't take that long for most of us but nevertheless it doesn't happen overnight after 2 years of high dose pred.

You need cortisol for all sorts of things - but especially for the stresses your body experiences daily - starting with waking up and getting going in the morning! And maybe taking it earlier if you can might help that aspect?

healthunlocked.com/pmrgcauk......

[Daisychain12 in reply to PMRpro]

PMR pro you are just wonderful xxxxx

[MamaBeagle in reply to Daisychain12]

Isn't she just! It is fab to have a highly trained physiologist here to help us all understand our incredibly co.plex endocrine systems .although I am sorry for her that she is here because she is a PMR longtimer,..

[Daisychain12 in reply to MamaBeagle]

Yes. 🌺🌸🌼

[Lanakay in reply to PMRpro]

Thank you so much. 7.5mg is right where I am at just now. I’m following the slow taper. I don’t have any pain but the fatigue has set in. I am also quite emotional and I suppose that’s part of it. Thanks again.

[Sho-Sho]

Many thanks for your reply - good idea to try and take the pred earlier, will give it a go.

[Hidden]

Hi Sho-Sho

Ah, the Overwhelming Fatigue! From someone who slumped in a Throne Like Chair in a Bedroom Setting in a Department Store 😂

It’s always around the 7.5mg mark, I’ve had a Synacthen Test & seen an Endocrinologist but that’s another story!

There is no option other than to give in to it l’m afraid! I’ve had a busy month which ends tomorrow, it’s my Birthday on Tuesday & from then on l’m calling the shots, no running around after other people or trying to do what’s unachievable then suffering as a consequence!

Maybe go up 0.5mg & then take it as steady as you can, there’s quite a few of us at this level at the moment!

Good Luck 🍀

Mrs N x

[Telian in reply to Hidden]

Many happy returns for Tuesday! xxx

[Hidden in reply to Telian]

Thanks Terri 🥂

[Sho-Sho in reply to Hidden]

Thank you for the reply - agree taking it easy is the key (have done that for two years now!) - blessed with a wonderful garden to look at and potter around in, two very affectionate Scottish terriers and a v. supportive husband. So on the down days I remind myself how lucky I am compared to a lot of people.

[SheffieldJane in reply to Hidden]

🥂🍾😘

[Telian]

Having read all the other comments I agree and won't repeat...time to take each day as it comes. As has been said try .5mg from now on. I'm on 4.5mg and, considering I've been down to 3mg before, cannot do the taper as I first did it, no longer 1mg reductions, and took me 4 months to reduce by .5mg - I'm at my 6th week on the next taper to 4mg, reducing by .5mg once per week, during that time I had to skip one week reduction as my symptoms dictated it. Did me good and I am now carrying on, I was afraid I might have to abandon the taper but no, I don't care how long it takes. Just listen to your symptoms they know best.

[Sho-Sho]

Good advice - tapering, at this level, has to be geared to how your body feels - I sat at 8mg for 10 weeks because I wasn't feeling too good, before I started edging down again.

Thanks.

[Grants148]

Sorry that you are feeling so tired,l hope that you will soon reach a level where you will feel much better.ln response to Daisy chain’s comments about Australian TV,l tried watching an Australian crime drama on BBC 4 last night but eventually changed channels.l always enjoy Neighbours though and l loved watching Skippy the Kangaroo when my children were small.I would love to visit Australia as l know that there are many fantastic places there,and l would so love to hug a Koala bear. Enjoy your garden Sho Sho,being among’st nature really does help us feel a lot better ,l am so thankful that l have a garden.

[HeronNS]

I think a common name for what you're experiencing is Deathly Fatigue. We all know what it feels like and we hope it is temporary. Make sure for every period of activity, even a pleasant social time with friends, or a leisurely walk, you have a period of rest. This too shall pass!

[Sho-Sho]

Yes, a good description! But you're right, it will pass eventually, the trouble is two years of doing hardly anything seems for ever - hopefully on the home straight now.

Thanks

[dawnsgca]

I have been on prednisone since June 2014. I am on my 3rd reduction period. Each time when I got down to 2-3, my doctor put me back up to 10 or 15 again. This time I am doing a slow taper and am at 3.5 now. Like many of you, I am exhausted and do things only because I "have to", not because I feel like it most days. If I do anything that takes much energy, like going to the zoo one day last week or serving a chicken barbecue at church on Saturday, I have to take the following day to just rest all day. I feel like a can't even think clearly on the next day. Sometimes I think that I am just getting lazy. It is so encouraging to hear what others have to say.