I'm dragging 'my you know what' Low pred? Adrenals?

[Grammy80]

Hello all, I'm down to 3mg of pred and holding at that until I return from an anticipated trip to Canada before tapering some more. I'll witness my first grandchild graduate high school and off to the University of Ottawa!

It seems we always need a rest here and there as we make our way through managing these....diseases. I didn't say what I was thinking.

Lately, it seems like going to a Doctor's visit, store, or ride! is kicking my backside. I sleep about nine hours per night and always have plans for tomorrow but am beat. I don't feel sickly at all, just whipped. I see my rheumatologist on Monday; any suggestions?

Or...Is this just the natural order of things? I've asked about the cortisol test, which he doesn't feel is meaningful at this point, and my NEW primary care physician agrees. It could be an insurance thing in the States.

I'm sure all of you wizards and Vikings will have an answer for me, even if the answer is...Hey, Marilyn, put your big girl pants on! 💞

[SheffieldJane]

I wouldn’t presume to suggest that you “put your big girl pants on”. You are the bravest girl already as you continually prove. 9 hours is a really good night’s sleep, do you incorporate a daytime nap? I properly go to bed and sleep for 90 minutes after lunch. If I don’t sleep I listen to an audio book in bed with my eyes closed. This restores me and makes the rest of the day much better. My adrenal function was within normal parameters, so I think I need to ride this bit out and carefully conserve energy as slowly as I taper. I’m no Viking nor am I a wizard, just a women doing her best, taking fairy steps towards the end of the rainbow as mindfully as I can. 🦄🌈

[Grammy80 in reply to SheffieldJane]

...and what a journey you have had to the end of the rainbow. Some days I have to nap..but if it is a good day (remember those😂), I don't really need it. A few months back, an afternoon nap was part of my routine. Now, I don't feel sleepy so much, as simply suddenly dragging. I know it will work out.

Another thing I'd forgotten until I read Heron's post was that I have a benign growth on my thyroid, but maybe affecting the mechanics of the gland??? I just saw a new primary care physician yesterday who suggested I consider having it removed though there are risks. I was scheduled for surgery but had an asthma attack that required hospitalization, and so it was taken off the table. It was my first attack in 13 years. She, Dr. Longstreet, suggested I go back to visit the ENT fellow, I will.

All in all...I'm in good company here, for sure.💞

[HeronNS]

I don't see why a morning cortisol test wouldn't be useful, as well as probably not terribly expensive. You probably shouldn't try tapering further until you start to regain some energy. If that never happens then the doctor really should order some tests. It's also possible it's not cortisol. When I complained to my doctor a few years ago that I was really tired all the time, expecting her to run a cortisol test, she actually did other stuff (I think thyroid was one) and discovered my iron was very low again. I now take another bottle or two of liquid iron supplement whenever fatigue seems to be worsening again. A morning cortisol test showed that I had normal cortisol level, although it doesn't reveal potential adrenal sluggishness in responding to stress.

Hope you enjoy your trip. Congrats to the grandchild! My husband did his doctorate in Canadian History at U of Ottawa. We both studied in Ottawa one year, I went to Carleton to do an MA in English. We then returned to Halifax and worked on our respective theses and started jobs. I really enjoyed that year in Ottawa, although they had record-breaking snow in winter!

[Grammy80 in reply to HeronNS]

Thanks...and you can see from my reply to Jane...until I read your post, I'd forgotten about my thyroid. It just seems things keep popping up to deal with; I'd forgotten that. It may play a role.

I wish they would do a cortisol test...just for me to know!! Yes, I'm so excited about Ella's choice. She is taking three classes in French and two in English; Forensic science and psychology. She's been in French emersion since the 7th grade. Proud grandma!💞

[PMRpro Ambassador in reply to HeronNS]

Hope you aren't been smoked out of house and home??????

[Grammy80 in reply to PMRpro]

My family in Eastern Passage, NS, has very poor air quality and one of my DIL aunts was evacuated from her home. I haven't checked today, but it was still standing yesterday. Smoke is worse in Boston, Massachusetts than Maine for some reason....just the winds off the water. My DIL said it will blow the smoke in and out...they are two blocks from the ocean. Like everything in life....it is lovely until it isn't.💞

[HeronNS in reply to Grammy80]

I was able to borrow a CO2 monitor from the library today and I'm not too impressed with the air quality in our unit. I closed the windows early, because the blue sky was starting to get white again, but the number has been creeping up all day. Of course we've been in here breathing all day, although I wouldn't have thought in a largish place like ours it would change so much.

Hope your family here is doing okay. It does seem like everyone knows someone who's been affected, either a simple precautionary evacuation, or losing their home. Heartwarming stories about rescuing pets. And I had no idea there were so many horses near here. As far as I know all the horses were safely relocated although some had to be rounded up again after being set loose originally in order to give them a chance to save themselves. The hardest were people who were at work and weren't allowed to get to their house to get anything at all, not even their pets, but I gather some rescue missions were staged. Could make a thrilling movie.

[HeronNS in reply to PMRpro]

Not really, but I went for a walk early, before it got hot, and had to put on my N95 mask because I was starting to cough. We are miles from the fire in our municipality, but the prevailing winds are blowing a much more serious smoke plume right along the coast from the largest fire ever in our province and I think that's the main source of air quality problems for us. I'm not complaining. Over 150 homes have been damaged or burnt to the ground here, and many more in the rural area with the big fire.

[PMRpro Ambassador]

From what you said last week - maybe trying to fit in too much too suddenly? You do have to get into training!

[Grammy80 in reply to PMRpro]

You are funny!!! I'm working on the combination of rest/get into shape. I'm letting my body be my guide and we can see how confused that gets me!!!

Seriously, some days I have great energy--of course I engage in only things I love. Then there are those other days I say....thanks, I know I'm so much better...but c'mon, will this ever end. When I feel like I can't take another step; it gets to me. Today's a good day, bone density test tomorrow...first in 15 years and a few cancerous lesions to be removed Tuesday. Maybe I will take a nap in there. Thanks xo💞

[DorsetLady PMRGCAuk volunteer]

Would say at 3mg a cortisol test is appropriate - but just rest as much as possible/needed, stay put at current dose as long as you want allowing adrenals a bit more time to catch up - and most of all, enjoy your trip,

[Grammy80 in reply to DorsetLady]

I knew the Viking would come!!! I think so too from being part of this great group. I don't understand their reluctance. I will just listen to my body and already had talk with rheumy about staying at 3mg until I return in July. Thanks xo 💞 I can't wait to see my family!!! and friends in Maine!!!

I'll be staying with my closest friend there who has GCA and has been maintaining on two injections of Actemra per month with success! She is 86~💞

[Pixix]

My rheumy said no cortisol test at low doses…wait. But then he also said to ‘tough it out’ however sick I felt…which I haven’t managed to do! Watch out for signs of adrenal inefficiency. I’d describe mine as symptoms I haven’t had through PMR. I was toughing it out when I had worse fatigue plus not willing to leave my bed in the mornings, & hip & shoulder pains…but I think there’s a limit! My doctors agreed & I went back to 5mg for a week, now 2mg, & a slower reduction to 1mg. Good luck!

[PMRpro Ambassador in reply to Pixix]

I really would hate to think of someone trying to tough out an adrenal crisis - and then you would feel half dead and risk being totally dead ...

[Pixix in reply to PMRpro]

Quite agree…had told Hubby what to do if I didn’t respond, or fainted or etc etc etc! 999!!!

[Grammy80 in reply to Pixix]

Thanks, Pixix, I'm really not sick at all but sometimes deep fatigue instead of something a nap would cure. Sometimes a walk around the block makes me feel better...if I feel I can stay upright.😂😂 exaggerating, just a little.💞

[Pixix in reply to Grammy80]

horrible…a great lack of energy!

[tempusfugi]

Honestly, Grammy80, I do just love the way you express yourself! I know exactly what you mean in your third para when you say everything just seems like one almighty effort right now. I recently made the mistake of overdoing things when my brother came to stay, even though I thought I had heeded all warnings to the contrary. I've been paying for it in the last 10 days😒 so it's a lesson hard learned. Today's the first day I'm beginning to feel slightly more normal, if there is such a thing when dealing with PMR!

All I can say is, well done for reaching 3 mg, and definitely stay there for a while, as you propose. As you said to me, on one occasion, QOC is all important. I agree with DL's thoughts. Am afraid I can't comment, though, on the cortisol test aspect but others have done so.

How lovely to be going to Canada and for such a special occasion too. Do hope all goes well for you (and your first grandchild). And I really hope you feel ok and that your appt with your rheumy goes ok.🤞

[Grammy80 in reply to tempusfugi]

Oh, thanks so much. I've always been a person who had to be doing something; if I was sitting , my hands were busy. It was almost easier to deal with when I had more brain fog!! Yes, quality of life is the key... and I've found I'm happiest and feel the best when I'm doing something I like. So, when I feel like it...I paint, sit and my computer, been writing a book for a year, and I personally want to thank whoever invented ZOOM!!

My opinion on the cortisol test obviously doesn't matter.😉I'd like it but....

Yes, that first baby is almost 18 and my grandson is 15.5....when you are fifteen, half a year is important! Who cares now.....my motto now is Invest in Me. I don't care if I wind up with an empty bank account as long as my body is willing...I'm going. xo💞

[tempusfugi]

'Invest in Me' - I like it. I think we all need to think like that! You Go For It, Grammy80💞

[Grammy80 in reply to tempusfugi]

We are all worth it, for sure! You'll never make a better investment than you~! It isn't selfish...you wind up being a better person, friend and happier. Just because I didn't get the memo until I was in my 70s....I don't want everyone else to waste time. Although, I never knew my self-worth was missing...until I found it.💞

[tempusfugi in reply to Grammy80]

SUCH excellent advise from you, Grammy80. Thanks so much☺️

[Louisa1840]

Well, I don't know about anything else Grammy but you gave me a good laugh and that's the BEST medicine! Thank you and good luck.....

[Grammy80 in reply to Louisa1840]

Oh, indeed it is!! My best to you!💞