Once again I have shown myself to be seldom right but never in doubt. I have read so many posts about exhaustion at different levels and thought, Oh, I won't have that!!!! And here I am at 6mg (had to go up from 5mg) and EXHAUSTED. I can do ONE thing and then I am on the couch or having a nap (after 10 hours sleep at night.) It's shocking to me. (Even though you all warned me sufficiently!) I really feel like I am sleeping all the time. Anyway.. my question (which I am sure you have answered many times..) is shall I continue going down.? would like to go to 5.5 next week. My ESR and SED rate are fairly low..lower than before.. so I think I should exhaustion be damned. But should I??????
Bonnie. began at 15mg 11/15/17 now at 6mg
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yogabonnie
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I know exactly how you feel. Tend this stage like you would a very delicate plant. Gentle yoga by all means, but tiny reductions, your body is confused.
I would stay put at 6 or go up to 6.5 until I got my feet back under me. If you haven't already, get a pill splitter and a supply of uncoated 1 mg preds.
I'm contemplating moving down from 7 to 6.5, and am looking at DSNS plans. I intend to go really slow - perhaps staying at each "week's" pattern for as long as 2-3 weeks or longer if I have to.
I have a full-time job and have what is known as a brutal, active commute (one of the longest in the USA) and I can't afford to take time off or lose my position. Napping is not in my Monday-Friday routine, and can't be.
We'd all love to be in remission. We'd all love our adrenal glands to come galloping back. Neither one is going to happen until our bodies are good and ready. If we've learned anything on this journey, it's to listen to what our bodies are telling us, and to listen to the whispers before they turn into screams.
I love your responses! They clearly speak to all of us. It is shocking you are so profound considering how hard you work and how much you do! Thanks for great advice.
It’s been a year and 8 months! I know PMR lurks in the background. The autoimmune part is evident when I wind down at 4:00 for the day! My sleep has been totally out of whack since the initial diagnosis. Go to bed early and get up 3, 4 or 5 for the day! I never nap. Not a normal body clock!
Sounds awful for you....10 hours sleep and still exhausted and sleeping on the couch... Sadly I have no advice to offer... But, maybe try Omega 3 Fish oil to help 'in the periphery'? Western medicine wants to view every ailment with a linear vision, when really everything is so very interconnected that many things can have a bearing; "many a mickle makes a muckle"... Add them all together and they will tip the balance over, so maybe assisting your body with Omega 3 fish oil might help to redress the deficit and push you a little back into the black?
I was very impressed with the words of wisdom spoken by Dr Mark Hyman and all the brilliant folk who contributed to his series; Omega 3 featured highly. I am currently on a strong course and already I am aching far less, I am sleeping better and have more energy...and the pain in my head and jaw (feelings of a pin pointed ice-pick with an electric current running through it) has diminished by 80%.
I am currently starting off on 3 capsules a day of 1,000mg. Aim to pursue this for a month...and then drop to two and maybe one as maintenance, depending on how I feel. Also currently combining it with an initial loading of 10,000 iUs of Vitamin D with chelated Magnesium.
I have been plagued with chronic fatigue from the start (semi diagnosed pmr in December) currently on 15mg hoping to start reducing in a month or two. I have given up full time work in the office of a secondary school for part time job in a care home. The latter will be more understanding of my condition than the former. I do what I can when I can by breaking jobs down into essential and non essential, taking long rests inbetween. I long for the day I can wash up, make a cuppa and vacuum my tiny lounge without taking a break. Hope you are feeling more energetic soon.
As DL says No, No, No
You can’t reduce further when you’re so exhausted, are you doing one of the Slow Tapers or simply going from one dose to the next?
Your/Our Adrenal Glands just do not want to wake up when we want/expect them to!
I think from about 7.5mg most of us struggle, I know l do & am at the moment!
Good Luck 🍀
MrsN x
Wow! Bummer. I am so sorry you are experiencing this!!!! I'm not looking forward to getting down to 7, 6, 5... maybe I'll just stay at 13.5!!!!
indeed. except for trips to see those grandchildren in alaska and sweden I don't need to function AT ALL! good reminder .. and somehow I married a man who 1. HATES a tidy house..would rather be surrounded by piles of books and newspapers and 2. scratches my back and hates to have his back scratched. and 3. cooks at least 1/2 time. so back to my couch!!! ha! (I will SPARE you his FAULTS but trust me....)
I would stick at 6mg and wait for your body to catch up.
Most of us experience the fatigue. I went with my choir to a showcase day yesterday. It was an earlier start that I am used to....on the coach at 7.40am. 2 hours drive to venue. We were first choir on stage, singing for 12 minutes. Then spent rest of day listening to other choirs and community singing. Not so taxing! My choir friends know I have the PMR challenge and the recovery from hip replacements, some with even a little understanding coming from a medical background. They were still surprised when at 3pm they were looking forward to a cuppa, and I said I need a nap! Back home for 6pm, I fell asleep for an hour. And in bed by 10pm for 12 hours of sleeps between bathroom visits. OK today, but will rest the whole day.
I have been at 5 Pred or below since early October. Circumstances keep interfering with my reduction.....latest being Cuba and S&D with hospital rehydration.
I had that too (twice) when I was trying to go to 4 1/2 using the dsns method--but in addition to feeling exhausted all the time, I felt like I had the flu--just a sick person all over, couldn't function at all. So both times I went back up to 6 where I felt so much better. I've done that twice now--currently trying to get back to 5 using dsns now. But in addition to the total exhaustion as I was reducing, i had the return of pmr aches and soreness which says I just can't reduce yet. Wishing us both luck!
I started Prednisalone for PMR a year and a half ago and am now down from 20mg to 6mg. I sympathise with your tiredness yogabonnie, but found it interesting because I've been berating myself recently for laziness. Just don't want to do anything beyond the daily routine, let alone go out in this cold weather in the UK . Maybe after all I can blame PMR, Pred - and maybe even already recalcitrant adrenals - instead of moral turpitude!
Snap! I feel that way too wondering if I'm just lazy. Just don't know how some folks can continue working with PMR. They have my sympathy. If I've been out and about for a couple of days, I need pyjama days afterwards 😣 Don't sleep well at night either so I blame that too. Such fun 😏
So pleased to read your post , I've been on this journey for 18months also and was beginning to think I had lazyitis as I can sleep for 10 hours , still wake up tired , don't want to go out , have zero energy and ache in all my joints , started on 15mg pred , went up to 20 and have tapered using dsns down to 8.5 , am now wondering if I should stick for A couple of weeks or try to reduce again , hope you feel less tired soon , gentle hugs X
Stick where you are - no point in reducing if you have aches and pains. At 18 months in, PMR still very much alive and kicking! Cold weather doesn’t help either.
SO frustrating isn't it ? Poor you, I empathise. I've been bowling along on the dead slow regime, eventually got from 6mg to 5,5 [its taken MONTHS !] but I patiently waited each time for adjustment, stayed there for 6-7 weeks and down by .5 mg, all fairly OK - BUT then .... down from 5.5 to 5 and crash! Needing longer and longer hours of sleep, waking exhausted, pain and total unpredictability of how each day would unfurl, I couldn't make any advanced plans as they frequently had to be cancelled - Things like too tired to pick stuff up off the floor when it dropped etc, and more or less brain dead.
I'm back up to 5.5 after a few days at 6 and here I will stay, and stay and maybe one day in April I'll give 5mg another try. SO please don't think of going down further, as everyone says .... go up a bit and stay there before you 'put your foot in the water' again, its no good fighting it - [which is a hard lesson to learn but no alternative] thanks to all the wise advice and support on this forum. Wish you well !
Dear yogabonnie,l am sorry you are feeling so exhausted,l hope that you will begin to feel better by staying on 6 mg of pred for now as has been suggested by those who have posted previously .l have been on 5 mg for three months now up from just 3 mg.My GP wants me to take 4 mg on alternate days but l am afraid to do that at the moment as the 5 mg is only just keeping me from having another flare.l had to go up to 6 mg recently because l had tried lowering .l think the cold ,damp weather does not help either. I find that a day out just food shopping means staying in the next day as even that can be exhausting,it is best to pace ourselves and try not to overdo things .The housework has to wait sometimes ,l only do what is absolutely necessary .l usually end up on the settee most afternoons ,l am more enthusiastic about doing tasks in the mornings and after that l only have to cook a meal in the evening after a light lunch.l wish you better days ahead xx.
Me too yogabonnie. Reached 6mg middle of January (DSNS) then hit a wall of exhaustion, tremors, the odd palpitation and occasional dizziness. So yes I am staying put til I feel a tad more human before the next exciting drop! All the best cc 🤗
Hello Yogabonnie, My doctor told me in July 2017 that the disease lasts 1 year ... started at 15 mg then slowly dropped after 1 year to 3 mg and then have to go back because no good blood results at 8mg then at 5mg and 4mg and 3mg and again to 7mg ... then see the specialist rheumatologist who gives 5mg for 3 months. I cheat and take according to the symptoms but no control of blood because my doctor is sick absent until the end of March.I have side effects of prednisone: palpitations, fatigue, dizziness, intestines, libido in the socks .. ..fatigue fatigue also. I look forward to receiving and reading Kate's book that summarizes the experiences of our friends. All the best for you.......Lea
Yes that'is what she told me and she was sorry to tell me that I will have to take Prednison 1 year....now I know it was not true ..... and ...of course life is not easy with this poison..... Thank you for your message, I appreciate not to be the only one ......
My dr told me 2years .When I reached the 2 years she wanted me off pred straight away and told me I didn't have pmr anymore!! I changed my dr and very slowly tapering still.
Wonder if it depends on the region - the standard German rheumatology textbook says an average of 5 years - and that was written long before Eric Mattison's recent study which says 5.9 years.
I’m struggling with exhaustion too. Besides fish oil, are there any nutritional or supplement suggestions from our experts who have been down the tapering road before? I am planning to go back to work part time in two weeks, but facing exhaustion while tapering (10mg now) will be a challenge it seems. Thanks.
I think NO SUGAR is huge for getting energy back. Now if I could only do it.I do GREAT all day then after dinner I eat COOKIES AND ICE CREAM. but I binge it a bit.. not just A cookie and A scoop. alas. but carrying on because seriously my arthritis and my mood and energy are better without SUGAR!
Yes, similar problem. Biopsy proven GCA -- later PMR. Went through the hell of reducing from 100 mgs pred to 2.5 mgs medrol/day. Cushingoid- like symptoms in the middle of the taper -- sometimes, these are still problematic.
I'm in a PMR flare, now, not wanting to get back in that medrol - then Cushing's symptoms --
Found a decent rheum at HSS in Manhattan + he is in agreement to raise to 4 per day for the PMR.
Yoga Bonnie, I like your posts and am in agreement with the naturalistic way you work w this. Will be getting some Vit k. Thank you. best, Whittelsey
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Taper 0.5 mg by alternating dose
My next taper - advice please 
So Tired all the time
tired
Prednisone taper and fever
