My fatigue is turning into coma-like sleep. What's up?

[Grammy80]

Have I read on the forum about DF? Deadly fatigue? Something is quite different in my tiredness. With increasing occurrences, I abruptly feel exhausted, eyes heavy and body heavy...I just want to stretch out. Like today, I fell into a deep sleep for about four hours or so. I'm fortunate I can indulge in that. This is something new. Today I woke at 9 am; at about 11:30 while sitting at my computer; Boom...I was whipped and walking to that chair felt like I was walking my last mile.

I've been on steroids since August of 2019, along with Actemra. I've decreased to 8mg (taper every six weeks) and will go to 7 next week. This is the first time in these past years I have ever gotten below ten ~! I have not had Actemra, TCZ, for four weeks because I'm healing a wound on my leg.

I feel pretty normal and OK... I'm really curious. Am I entering the world of adrenal gland inaction? Is this par for the course?.....I really feel OK; it is just different for this big old body!! You will all tell me.💞

[DorsetLady PMRGCAuk volunteer]

Certainly sounds like adrenals- as I’ve said many a time, I succumbed to random bouts of fatigue when mine were struggling. Didn’t seem to have any other symptoms than that and they weren’t quite as extreme as you describe. Took mine about 7-8 months to really get going again.

SnazzyD had similar issues and I’m sure she’ll be along with her advice.

The only thing, so long as they don’t get worse, and if they do seek medical advice, is to continue reducing slowly -and rest when you need to.

Maybe have a look at this link which has a number of posts relating to the subject -

healthunlocked.com/pmrgcauk...

[Grammy80 in reply to DorsetLady]

Thanks so much DL, I did read quite a few of the articles. I see my rheumy August 3 which is good timing, dropped to 7 just today. Life is so much better for me when I know what is happening. I'm fortunate that I can rest anytime and have no hesitation in doing it. Audible books are great and put me right to sleep. xoxo💕

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

I switched to audio books long time ago -for obvious reasons - trouble is someone needs to invent a device so they stop if you fall asleep! It’s easier with an old fashioned book -it usually stays open on the page 😳Sure you’ll update us on next appointment.

[Grammy80 in reply to DorsetLady]

? How did I miss this? So true, back in the late 80's I bought my college bound hypoglycemic son a gadget to put over his ear when his head fell forward in sleep, it would buzz. But now, with hearing aids, masks, glasses...I have no room and my ears aren't tiny.💕🥀

[jinasc]

Methinks you need an Endochronologist for a chat 😘😘

[Grammy80 in reply to jinasc]

Methinks you are where you usually are....spot-on. My doctor had mentioned it and methinks I'll be discussing it with him 8/3. xo💕

[SheffieldJane]

I have felt the swooning tiredness. There are other things it could be, so mention it to all your specialists. Being a lazy person, I quite like surrendering to it - no choice etc and time out from feeling rough. I love sleeping, I get wonderful dreams. I suspect that I am leading a full, rich life in my dreams. Mention it dear Grammy. 💖

[Grammy80 in reply to SheffieldJane]

I hear you, Jane. I'm a dreamer too, maybe I'll see you for tea? 💕

[SheffieldJane in reply to Grammy80]

😊☕️☕️🧁🧁

[Grammy80 in reply to SheffieldJane]

Mmmm Snacks too!!💕

[PMRpro Ambassador]

I think it is very likely to be adrenal function lagging behind the lower pred dose. It happens at different doses for different people - something to do with the receptors on the surface of the cells I suspect. And you needed very high doses of pred pre-Actemra didn't you?

If your rheumy isn't up on it - maybe an endocrinologist but at this all they will say is slow down the taper or switch to hydrocortisone and I wouldn't choose that on the basis of better the devil you know!

[Grammy80 in reply to PMRpro]

Do you think not being on Actemra these last few weeks has had any effect? Yes, even though I was started on Actemra in October 2019 I was still on 80 mg per day for some time, then the lowest I could ever get without a real flare of the GCA was 40 as recently as last fall. After that got to 10 once, back up to 40 and this is my first time in three years in single digits.

He is a great rheumy and has already mentioned bringing in an endocrinologist ' at the right time'....so we shall see what he has to say 8/3, by then I will have been on 7 mg two weeks. I expect to feel the drop in a few days. Maybe when I see him next I'll suggest .5 drops---think it would help? 💕💕 I'll take the devil I know any day too.

[PMRpro Ambassador in reply to Grammy80]

It must have when you think about it - there is the possibility inflammation is building up and that can be fatiguing.

[Grammy80 in reply to PMRpro]

I go to the wound clinic Thursday....if its pretty clean, I'll call for Actemra....like 'Ricolla' That was a beautiful commercial..x💕

[piglette]

I found the real problem with DF was that I could never see a whole TV programme through. I taped everything in the end, then I would not know at what point I went to sleep. I would shut my eyes and oblivion!!

[Grammy80 in reply to piglette]

Wow....that is the truth!!! Anymore, when my head hits the pillow or I lay back and shut my eyes, I KNOW I am kissing a few hours goodbye and don't even bother with my favorite....Judge Judy~!💕

[Sharitone in reply to Grammy80]

My husband thinks she is great!

[Grammy80 in reply to Sharitone]

She amuses me for sure. Sometimes I think she is horrid, but I always go back for more.💕

[calicojoy41]

I STARTED INFUSION OF ACTEMRA YESTERDAY!! I AM ON 12 MG PRED, I WILL BE SO GLAD TO START TAPERING WHEN THEY GIVE ME THE WORD!!!

[Grammy80]

Oh, I'm so happy for you!!! That deserves capital letters. Even though I was a 'long hauler' for lots of reasons, I really think it enabled me to be where I am today. So glad!! All the best.💕💕