Extreme fatigue

[Miacaro45]

I have been taking Prednisone since October of 2020- 80 mg for GCA. I am now down to 10 1/5 mg.In between I was diagnosed with PMR. It has been a very hard ride but I managed. What I notice now is that I can be sitting reading or maybe doing something equally quiet and I become so fatigued that I must get on my bed or I feel that I will fall down. I find it takes a couple of hours to finally feel better. In the last month, this fatigue happened once a day and now I am feeling it twice a day. I am not sure what is going on now.

Thank you for always being here and offering your experiences and expertise.

[DorsetLady PMRGCAuk volunteer]

Although it’s a wee bit high for adrenals to start thinking about working - some people do find an issue before they get down to the lower doses we often quote … it’s very individual This might explain a bit more about them -

healthunlocked.com/pmrgcauk....

Maybe stay at current dose for longer than you normally would to give them a chance to get their act together, if that’s what it is… and really a very slow taper, small steps, resting as and when you need and patience is what is required to nudge them into waking up again.

[Miacaro45 in reply to DorsetLady]

Thank you DorsetLady. I am tapering very slowly(going down by 1/2 mg.) for almost 8 weeks. Patience is the watchword.

[piglette]

I got hit by the dreaded ‘deathly fatigue’ at around 8mg. As DorsetLady says 10mg seems a bit high, but we are all different.

[PMRpro Ambassador]

Are you trying to do more because you think being at a fairly low dose relatively speaking you SHOULD be doing more?

[Miacaro45 in reply to PMRpro]

Not at all

[Merryfield]

You are not alone. Sometimes I want a nap at 10 am in the morning. I hit the wall between 1:30 and 4 pm as well. Usually nap in the pm.

[Miacaro45 in reply to Merryfield]

Thank you

[KASHMIRI1]

Good morning also have had GCA since 2020 and am now down to 5.5mg of pred.I have experienced fatigue right from the start. I usually have lie on my bed about 2ish and listen to radio 4 with the intention of listening to the play but wake up as its finishing. If I try to read I am gone in about 15 minutes. I do at least sleep at night now. I used to get quite upset about it but now just go with it.

[Miacaro45 in reply to KASHMIRI1]

Thank you

[Gimme]

I don't have GCA, so I can't compare, but one of the features of my PMR has been the deathly fatigue more or less throughout. Before diagnosis, luckily I was working at home, so I was having to disappear for a couple of hours for a sleep in the middle of the day. Days in the office, I had to nap in the car at lunch time. I didn't need to nap so much when I was on 10-15 mg pred, but the fatigue came back as I started to taper. It has been intermittent since, and some days, all I want to do is sleep. I am usually flagging around mid afternoon. I can't be sure if it is the PMR, pred or the adrenals right now, but do not underestimate how draining it is to have an autoimmune condition. The systemic effects of the illness often seem to be overlooked and your body needs to be able to recharge with rest when needed. If work commitments are not preventing you from sleeping in the day and you feel that you need to, then I would do so. Sleep is restorative and taking rest is part of the recovery from your illness. Do not feel any guilt about it. Instead, congratulate yourself on great self care.

[Miacaro45 in reply to Gimme]

Thank you for your support

[Highlandtiger]

It was 6mg when the deathly fatigue was at its worst for me. Absolutely grim. Everyone is different.

[cranberryt]

I had extreme fatigue until I got down to about 2mg and it has eased up some. But I also make a point of going to bed earlier. It doesn’t help that I have to get up early to get my kids out the door and I am not a morning person. lol Even when my pain has been controlled, the fatigue has been a struggle!

[GCAinCarolina]

Dealing with the fatigue has been one thing (of many) that have been frustrating to deal with. My rheumatologist tested my vitamin D level and it was extremely low, so now I am taking daily supplements that seem to help with the fatigue. You might want to ask your doctor about this.

[Miacaro45 in reply to GCAinCarolina]

Interesting idea. Thanks