Fatigue...again...any tips please

[Temoral]

Hi Everyone. 3and a half years on pred now. Flared again at 3.5 and advised to go to 8mg, to control? GCA ,which felt much more comfortable and gave QOL. Junior Rheumy initially pressured me to reduce with MTX, but then usual Rheumy said just to try a very slow 6-8 week taper.Slowly crept down to 6.75...but...fatigue has hit with a vengeance, fuzzy head and a very low feeling...would love to be out in the sunshine. Any tips would be gratefully received as another day flat out is in store. Sorry to sound miserable...not my usual approach to life.

[piglette]

I never found the way of getting over the adrenal come back! I got to 5mg and turned into a zombie. It was an effort to even change the program on the TV. I gave in for a while and went up to 6mg and things improved a bit. It did seem easier coming down the second time, but I was a wet rag for quite a while.

[Temoral in reply to piglette]

Thanks Piglette...even if this isn't a solution, shared experience is cheering in a strange way😉...acceptance is difficult isn't it. X

[piglette in reply to Temoral]

You are not ALONE 🧟‍♀️🧟🧟‍♀️

[Temoral in reply to piglette]

😘

[DorsetLady PMRGCAuk volunteer]

No easy answer unfortunately very slow taper and tiny steps down - as you are doing - time, patience, (lots of patience) and resting when you need to.

[Temoral in reply to DorsetLady]

Thank you.....tiny steps are .25 over 2-3 weeks at the moment....and doing very little except for getting emotional about everything, big or small. Treating myself to a rewatch of series like the West Wing...🌞 and looking at daffodils in the garden.

[DorsetLady PMRGCAuk volunteer in reply to Temoral]

You could extend number of weeks between reductions -or just sit at current dose for a couple of months and let the adrenals catch up..,

Took mine about 8 months from when they first started to struggle at 6mg and finally got the message when around 3mg. Fortunately mine was only random bouts of fatigue which seemingly came on for no rhyme nor reason.

You will get there, but it can be debilitating some days.. enjoy the daffs.

[Temoral in reply to DorsetLady]

Thanks DL....wise and encouraging words as usual. Good to know that you are free from this...gives me hope. 😊

[DorsetLady PMRGCAuk volunteer in reply to Temoral]

Good it gives you hope -that’s my aim…

We must never give up on hope -no matter how difficult some days are.😊

[Groggrim in reply to DorsetLady]

Thanks for your encouragement to Temoral. I have also opted for just 0.25mg reduction at a time for now, instead of the 0.5 and I prefer it.

[bluecheck]

Hi, I am still on 9mg pred so am not so good for advice on lower than this, but just to say hope you feel better soon x

[Temoral in reply to bluecheck]

Thank you bluecheek...hope your reduction goes smoothly. X

[Angelsmummy]

Morning T,the dreaded fatigue and emotions,really feel for you.I got that at low dose,horrible experience when Mr Adrenal decides to poke his nose in ( or not!) Guess it is just a case of nice and slow reductions as has been suggested on here by the Wise Ones and realise that we will get better in time,we are not alone in all of this and just do what our body lets us.Impatience is my biggest thing,trying to get it into my head that the person I was 3 years ago is not here at present,but maybe she will return in a slightly different form in the not so distant future.Good luck,chin up and stay well.xx💐💐😜

[Temoral in reply to Angelsmummy]

Morning A...thank you for such a reassuring message to start my day! You do know how I feel at the moment and together with the Wise Ones, you will all carry me through. I know that I too have a battle with patience, and knowing I am not that 3 years ago person...but the new me will have hopefully learnt a few new approaches. Thank you again...very kind 🎉🌟

[Grammy80]

You are a member of an exclusive club~! I was happy to hear you went up a little bit and felt better. There is no prize for getting to zero; so much better to stay at a comfortable dose and taper slowly. My experience is that staying on the new dose longer helps; our bodies seem grateful. There is light at the end of the tunnel, you travel in good (don't mean to brag) company with lots of caring as you can tell from the responses. I think the extreme fatigue and feeling low (enough, already!! right?) is almost like a 'right of passage' to get to the end.

I'm just on 8 mg right now, with Actemra, and it has been five and a half years...and after some 'messy' flares, I'm ok with that. When you are tired, take a snooze or put your feet up...listen to your body because it is really smart! My best💞

[Temoral in reply to Grammy80]

Thank you for your wise and caring observations, Grammy. I am glad you are there in my club. ❤️I hope you are feeling good today. 🫂

[Grammy80 in reply to Temoral]

Thank you, I am~!😍 🫂

[Ann1A]

Hello, firstly to say You are not alone, and I sympathise. Originally I worked with a super slow taper but couldnt get to10mg, i felt a deep and disabling fatigue which sometimes went on for a couple of months . My my rheumy then suggested reducing by .5 on alternate days, with old dose in between, and MTX, and I found it helped a little... I still feel deeply fatigued and it takes me about 5 weeks to recover, and I often sit at that dose for a while before trying again.I mention the following in case you have similar strange time effect.. the only reduction factor that felt significant to me was that, always after a day of feeling dead, lacking interest or energy, reliably around 6pm I would suddenly perk up and feel interested , engaged and have the energy to do things. This pattern went on for over a year, the fatigue was sudden onset at 9.am and suddenly lifted at 6.pm.

Advice here was to switch my pred to evening dose, which I did with miraculous results.

(Unfortunately I also suffer from Restless Legs Syndrome and they were triggered big time, so I have now split my dose and I have less RLS and still no daytime zombie effect)

Hope this is of some help to you, at least the shared fatigue if not the weird timing effect.

Good luck and regards, Ann

[Temoral in reply to Ann1A]

Thanks Ann....I have to pace myself...not my strong point...and be more patient...another thing I don't do naturally...but setting small goals and resting instead of ploughing through is best. My tapering is now on 0.25 drops,,repeating another week when necessary. Building up short strolls when I can, combined with breathing exercises...all slowly does it. Good luck with your methods too...I may try the later, or slit dose regime soon. 💐