Hi Everyone. Woozy and fatigued at 6mg...stick or increase?

[Temoral]

Managed to reach 6mg on DSNS , tapering by 0.5 mg over 5-6 weeks. However, have been feeling woozy and fatigued. Possibly family stress...should I go back up for a week or two, or just stick it out . No point in contacting rheumy...never replies. ...

[PMRpro Ambassador]

If you are under stress - maybe. But bear in mind, it is s stage you will have to get through at some time.

[piglette]

At 6mg it could be the adrenal glands waking up. If so it will slowly go away, if so stick it out for a while. I would be careful of decreasing as the fatigue can get worse. It is just a matter of time.

[Temoral in reply to piglette]

Thank you both for prompt replies...yes, just take it steady and journey on I think...but always good to have support on here. Hope you are both doing well at the moment. 🙏

[DorsetLady PMRGCAuk volunteer]

Would plump for a combination of stress and adrenals ….so stick where you are for time being. But just monitor things for next couple of weeks and make sure (if it’s stress) it doesn’t turn into a flare.

If adrenals then continue with slow tapering regime, rest as much as possible -and have patience.

[Temoral in reply to DorsetLady]

Ah yes...patience...not my best quality, but am learning to pace myself. However, I do take on too much at times and have to talk myself into afternoon naps. It's the Viking thing.. Thank you again...you are most probably right. X

[SnazzyD]

I was well under 10mg Pred and before my adrenal glands were working properly a trip to a small supermarket was about my lot. By 5pm most days I felt empty and weepy. It took until under 5mg for my adrenal glands to start to get the message that they needed to put in some effort because the Pred was no longer taking up the slack. I also had to take longer than 5-6 weeks to drop by 0.5mg for this reason. Not everyone is like that but posts complaining of feeling horrible (not PMR horrible) at this level is common. None of my Rheumy docs got it so I just tailored my activity and kept going rather than jacking up the dose in order to cope, unless the situation was truly unavoidable and not regular. Sometimes I stuck at a dose a bit longer if there was sustained stress that my body couldn’t cope with. However, do try to do what your body says rather than what you want it to do. You can’t short circuit this stage and the adrenal glands will work when they decide to which is sometimes difficult if life keeps throwing up problems.

[Temoral in reply to SnazzyD]

Very sage advice...thank you...I will stay on 6 for a couple more weeks and reassess. Thank you 🙏

[Viveka]

One week into 3mg I finally understood what deathly fatigue is. Luckly it only lasted 7 days and I feel reasonable now. My motto is if under stress, stay where you are a bit longer if you need to. Never go up unless it is a clear undisputable flare.

[jinasc]

Initial diagnosis Aug 2021. GCA only ?

This is November 2022 just over 1 year and down to 6mgs?

Are you on both Pred and Actemra?

[Temoral in reply to jinasc]

Yes GCA only...Only on pred so far...tapered by 2 mg, then 1mg each 4 to 6 weeks until reached 9mg, then stayed there for 4 weeks and started 0.5 reductions on DSN on the 5 week model...not really supported by rheumy, but encouraged by supportive GP. So far so good, but sticking on 6 for a week or 2 until the woozy fatigue settles. ..thanks for reply