Once again I have been asking myself what in the world is wrong with me? I have lost interest in my garden, which I love, love, love, and my pets seem to be quite a bother. 2 out of 4 have been sick and to the vet in the last few weeks with one going again for teeth cleaning and one pulled. I am now home two weeks from a vacation with lots of walking (which I could do) but there has been lots going on each day. Several late nights as well. I waited until this week to start a reduction and I am yesterday on a new dose. 6.5 to 6. After doing some reading this points me to the ever up and down adrenals. My pattern seems to be that the first few weeks I feel somewhat depressed, don't sleep well, and am irritable. Then the clouds seem to clear and I do ok. I have also started physical therapy which is improving my core strength and balance. I can't manage the balance ball, however. Just wanted to post because it helps to know you are out there in the same boat 
Oh those adrenals!: Once again I have been asking... - PMRGCAuk
Oh those adrenals!
I recognise all of this and I don’t even have any dogs. My garden is a little courtyard with pots and OH expresses himself there, these days.😕
It’s just the endless mountain of chores to do that seem never ending and you keep finding more that you don’t have the stamina for. Still my fury has filled a large skip full of the clutter of a lifetime - they took it away today - slight relief.
I am at 4 mgs and still can’t get out of a car without spraddling all over the place. Well done for all the efforts you are making, when I know you just want to lie down and pull a blanket over your head. May this malaise pass quickly. Xx
I'm impressed that you had the umph to clean like that. My son is doing Marie Kondo tidying and sent me pictures of his piles. I love the idea I just can't do it yet. Instead I'm getting rid of things that annoy me. No family members!!
😂 but what if nothing sparks joy? ( Marie Kondo reference). It was satisfying to see my junk disappear as someone else’s treasure before the Skip men came I mean.
Yes if nothing Sparks joy that's a problem right there. I do love other people finding pleasure in my discards. Usually I'm a second hand shopper but I don't really need much anymore.
My bric-à-brac days are over too. I enjoyed it while it lasted though. Now I send toys to my grandchildren in Australia. Storing up clutter for my poor daughters. I do not miss Lego.
My 35 year old son and his wife just bought reconditioned Lego sets to put together, like doing jigsaw puzzles I guess. I love Legos but not picking them up.
Is it for the same reason I wouldn't¿ I would wa. T reassurance they had been deep cleaned, sterilised, anti-bacted etc. Dread to think where they have been.
Ditto, my story is the same...garden, dogs, and stuff. Havent found the magic key to ease the bummed mood.
Carry on...J💃🏼
Can’t help chuckling over ‘he sent me pictures of his piles’ - hopefully not medicinal 😂
😂😂😂 I missed that one.
Oh, your description— spraddling— is perfect. Nothing “ lady like “ when I get out of my car. Consoled that it must go with the territory. 🤗
I think you sound like your batteries are right on the edge. I had a blip going to 6mg and couldn't even get lower. Try and do one really nice thing for yourself or someone else then try and rest a little bit.🐇
I like that idea! Thanks
I completely empathise with what you are saying. I was only telling my brother yesterday I feel like I've been taken over by aliens or something as I'm just not ME anymore!
likewise I usually love my spring and summer days making the garden look lovely and sprucing up everywhere. Not done hardly a thing this year, likewise interest in anything seems overwhelming effort. I'm really hoping this passes and our normal self is returned to us.
I've just started the taper to 4mg and hoping for a smooth ride, fingers crossed!
Overwhelmed is a good word choice. I recognize it frequently now and that is when I pull back with what I'm involved in. Even just thinking of taking something on (appliance repair) can make me feel that way. Sometimes there is no rhyme or reason but I respect the feeling. My garden is lovely but I've lost interest... Strange. I wait all year for Spring and Summer.
Hi bunnymom,
I think you are now in the most difficult time with corticosteroids. From 7mg on down it has been a pretty bumpy old journey for me but down to 1mg now with fingers crossed there won't be a flare up. I lost interest in the garden too which I also love but the love has returned and we have downsized to a much more manageable garden size.
Just take it very gently and enjoy what you can manage. Same with pets. I love my pets too but when my son's 2 cats came to visit for a couple of months I found the work involved not something I had the energy for anymore.
Over the last 2 years of this PMR/GCA journey I've learned to let go what I used to be able to achieve and adjust to the new lower energy level, always mindful that I don't aggravate the disease. Mozz
Isn't it interesting that Drs don't mention the battle to reduce and the side effects after the PMR has lessened. After being on the forum I learned getting off the predisone was no easy matter, so I retired.
The reason it's difficult is the Pmr is still bubbling. I am at 6mg and 5mg is a no go as pmr flares everytime. Some people get down to zero an think that's it....but pmr is still there and bites their bum again a month or so later. Then its back to a higher dose instead of a low dose for longer. I realise people have issues waiting for adrenals to kick in, but, in my mind, the slower i go the more chance I give my adrenals to wake up and contribute a small amount of support for ages then ask for a bit more for another long while. If I am at 6mg for another 12minths I don't mind as long as Pmr is controlled.
This is my attitude also...been at it for 6+ years, and dont see any quick end...
Must say I didnt anticipate my retirement to be filled with PMR!
🙏🏽💃🏼
No. Not the perfect scenario!
I would have loved to have done this far more slowly too Poopadoop but my Rheumy is insistent that I get off the steroids so I'm going down by .5mg a month on her instructions. So here I just have to wait for the backlash I suppose and start all over again..... Mozz
I will hope it all goes ok for you. They are inconsiderate and inhumane if they just keep pushing for zero.
Thanks Poopadoop. She has been excellent to date but I'm really edgy with this one so I haven't quizzed her on her decision. Considering the experiences of others on this site it isn't going to go away in a hurry sadly. She has said something about putting me on something else if I flare.
They certainly lack patience and seen to have the idea that bringing out the big guns is best.
She has to learn it doesn;t work like that - PMR/GCA is in charge, not her. And you shouldn't have to suffer for her insistence. And if slow reduction works - why add in another nasty drug and its side effects? Some of which are potentially pretty nasty and with no guarantee they will work any better than pred.
I would have had to retire too if I was still working. There is no fighting this disease with will power alone. It has to be the meds and taking life in small bites of what you can still manage. I think doctors could talk more frankly about reducing the meds and the deathly fatigue that comes with that. Where I was at with the PMR/GCA there was no other option but to take them as is probably the case with all of us.
I am dipping from 3.5 to 3 and CRASH suddenly and must nap a couple hours. It could ALSO be that my son and his wife and 20 month old baby boy and DOG are living with us!! Until they find a place. Which is wonderful and crazy and difficult and all the thing amazing. BUT exhausting. Fortunately they listen when I say. I have this DISEASE and I have to rest. I am a little poke my nose in everything too helpful and I suspect my naps are quite relaxing for them too!! And yes to Marie Kondoing everything thing. I am sick of it all. My husband however has his stuff from the day he was born I swear. BUT I will sweep my own side of the street only! I could live in a tiny tiny apartment and be happy. Except I do not have the energy to clean this big house enough to sell! boggles the mind! We are in it together!!!
If you had the tiny tiny apartment there would be no room for company 😀
Hope posting helped you. I'm down to 4.5 and want to go to 4 but dreading it. Yesterday evening I signed up for a "wellness" program at local gym in the hope that having a commitment and it is something new will give me a boost
I go to an exercise range of motion class at our hospital. We move to music. A year ago I could just do half a class. Now I'm there for the whole thing. Built a great new community of friends, most with some kind of health issues. Hope your new adventure works for you. We are all looking to help ourselves.
.
Down from 4 1/2 to 4 and every drop has its feel crappy lethargic days but if I stick with it I start feeling better around the fourth day or so...not easy to stick with it sometimes...those adrenals take their time that’s for sure..
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