I've had 3.5 years of GCA with classic symptoms of PMR. Have yo -yoed prednisolone medication and have been as low as 2mg recently. Situation was then confused by a very painful trapped nerve which has now been resolved. At the moment I am on 8mg with 7.5 weekly methotrexate and have little pain apart from that from a wrecked right knee which I hoped to get replaced one day. My blood tests are good so I seem to be progressing fine apart from some muscle weakness in legs. However I am still getting days of extreme tiredness and can't keep awake. Any suggestions to combat this tiredness, I am trying to exercise with walks daily but finding it difficult. I have spoken to my GP but he doesn't seem to be able to recommend any med to make me bright eyed and bushy tailed and boost my energy levels. HELP!
Tiredness days: I've had 3.5 years of GCA with... - PMRGCAuk
Tiredness days
How long have you been on methotrexate? And do your days of tiredness come after good days where you have been catching up? Or otherwise more active than usual?
Adrenals maybe? Slightly high dose of Pred - Adrenals usually cause problems when on a little lower, but worth considering.
Have a look at this - for info if nothing else -
Are you GCA only or both?
Both, I think’!
I find that taking a regular nap in the afternoon, whether I feel like it or not, allows me to have an evening. This is good because everyone comes home from work and I get to see them as well. I actually look forward to the sleeps and have some of my best dreams. There was a bit of a battle with myself at first ( sleeping my life away). I do however, look and feel much better.
Sleep does help, doesn't it? I try and have a couple of naps during the day (10 - 20 minutes usually does it)! As I sleep at least 9 hours a night - except for loo visits😂 - I'm sure the doctors would say "get up woman and go out". Now I'd smile and think "s-d you!!" 😂😂😂
Know the feeling! I have had GCA for just over 3 years now (but fortunately not PMR, yet, fingers crossed!), just managed after a two month taper to reduce by half a milligram to 7.0 - having stayed at 7.5 for a year. I just feel exhausted most of the time and if I can always rest in the afternoon for a couple of hours otherwise if I overdo it I feel grim. My Rheumi says it's still the GCA, be it at a much lower level causing it plus no adrenal function, as yet, having had the test done & adrenals still fast asleep. I have been advised to exercise as much as possible but for you with a bad knee probably v. difficult. I think I have accepted just still need to rest and Pace myself, not always easy.
I don't think, sadly, there is any magic fix, just one day we will be bright & bushy- tailed again!
Good luck.
I envy all of you who have retired and can sleep during the day. I still have to work full time and being in chemical safety, I can't afford not be alert and on the ball, even at 4pm.
I think that's a bit much. You could and probably should have taken some sick leave. I had to effectively retire at 46yrs old because of ill health. Dropping from 40 to 50k a year to under 10k, worrying every month that I would lose my house. If you feel jealous because you are suffering fatigue then maybe for your own and others safety you should take some sick leave. Not everyone who has retired takes a nap, some people with GCA on high dose pred probably don't sleep much anyway. Please be careful with how you phrase things and bear in mind that others may be suffering as well.
Before you reply to the forum it might be a good idea to think how your words might be construed. I retired at 45 to look after my husband when he broke his back in the fire service but didnt notice any chance for a daily nap! As a barrister I would also question your employers allowing you to continue to work in a safety position involving chemicals whilst on a drug known to cause fuzzy head symptoms!! Or gsve they not bern told?
I think you will find many of us continued to work after PMR and pred. And many worked and did nothing else because they couldn't. Being retired means we have worked all our lives - and many of us still work even in retirement. My husband and I chose to live on a lot less income rather than kill ourselves in the service of an employer who will never erect a memorial to say "He gave his all for us".
It is all about priorities and recently I saw a poster above a desk. The Dalai Lama usually hits the spot:
"The Dalai Lama, when asked what surprised him most about humanity, said: “Man. Because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health."
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