Hi to all who have been through this and survived.Do I continue to reduce through it or do I wait until some energy returns? Now at 3.5 for last 2 months, down from 15 six years ago.
Appreciate all experience as at the moment, although no PMR pains, am nervous about pushing adrenals too far, too fast.
Thank you
Now if my deathly fatigued pred head had thought that through I may have found an answer like ask doc for cortisol test. Will do when I have energy to sit on phone for 40 mins - it really doesn't help!
Do you get any routine blood tests? If so, ask them to add it.
Has anything changed in the 2 months on 3.5mg? Any improvement at all? It is certainly low enough to poke the adrenals some - are you managing to function otherwise?
Nothing really changed. Mother at 101 demanding (nothing new and am only child). Partner's health deteriorating slowly (inoperable heart valve and aneurism). I feel like wet dishcloth. Will call surgery on Monday. I am on autopilot for most of time, lovely neighbours but don't want to depend too much. Don't think present circumstances helping - life!!
No - I meant in how you feel. I accepted that in a similar position I needed as much pred as I needed to function.
Feel like wet dishcloth. Trying to keep as low a dose as possible as now have cataracts in both eyes which eye lady tells me are steroid induced. Will make supreme effort to contact invisible gp tomorrow. Blood tests good, told to drink more (think they meant water) and take statins (refused). Have been quite stoic but now maybe time to stop! Thanks for being there x
Maybe steroid induced - but there are a lot of eye people who will tell you they are steroid induced but ut us coincidence - unless of course they are the different once that ARE due to steroids. I've been on pred for 13 years and only just found very very early cataracts. But once they are there, they have arrived.
Oh PoshDog - perhaps they meant alcohol...?🤞
Yes, that is what I was going to suggest. Part of me thinks that this is something we have to go through and tolerate until our cortisol levels are satisfactory. First however, we need to know that the poor things have the capacity to work. An unsatisfactory morning cortisol test should lead to a more in depth Synacthen test. I have both failed and passed one at 5mgs and 3 mgs respectively. The 5 mgs gave me too much artificial cortisol to stimulate my own adrenals. 3 mgs was just right and I got a good result. This was with PMR only. I was then diagnosed with GCA ( extra cranial) LVV. Put straight up to 40 mgs. I am hoping my poor system can recover again. I feel much worse this time with unexplained, significant abdominal pain that may or may not be connected.
I have an endocrinologist now, triggered by my failed test and am awaiting the results of a cortisol kit he sent me. You need to get into the system. You feel safer once the endocrinologist is involved, it is their sole focus.
Who knew this hell was waiting at the end of all our struggles? Rest and sleep a lot, don’t fight it. This complete apathy is not your fault. It is a significant part of your illness. We had no choice but to end up here. Good luck!
Hell is accurate description. Your last paragraph was cheering in a strange sort of way, 'Complete apathy', perfect description. For you to be then diagnosed with GCA invokes a reaction I can't print here, not fair hardly sums it up.
Shall follow your advice, tlc is what I need, but perhaps a good endo would be the next best thing.
Thank you and good luck to you too!
But even a good endo can't actually DO anything - except put you on steroids as replacement therapy
That said, my endo's been wonderful about adjusting things, guiding me along the way, really paying attention, dealing with the steroid-induced diabetes. But, then again, maybe it's just her.
Mine loves his specialism, draws me diagrams and speaks to me like an equal. The bits I understand are fascinating.
morning Poshdog
I have had exactly same experience. Extreme fatigue. My rheumatologist is a treasure and really listens. She asked GP to do 9 am cortisol test - they dilly dallied but eventually gave me an appointment BUT DID NOT TELL ME NOT TO TAKE PREDS BEFORE ON THAT MORNING. Luckily I had read this on this wonderful forum. Result was low at 93 rather than base ok level of 133. ( see previous post of mine). Luckily rheumie insisted I saw endocrinologist who said I have adrenal insufficiency and I had a synacthan test in hospital last Thursday. Waiting for results but consultant will be working as a junior doctor this week so may be delayed. Good luck!
Hope results are positive.
Having personally hit the deathly fatigue stage, don’t try and reduce until it improves. You may have to stay at the same dose for some months. Ideally don’t increase either unless you have a flare, although my deathly fatigue was so bad I was in a semi comatose state and I did increase by 1mg.
Thank you for that suggestion and advice. Shall try not to increase and certainly won't decrease. I have thought quite a bit round all the messages and think that all the while I am functioning I shall follow the tlc route. Think that is the bit missing for me and providing it for others is hard work! So shall now set about spoiling myself. Don't have either energy or inclination to instigate a merry go round of appointments. So with the wise words from this site ringing in my ears I shall start my programme of self indulgence. Will let you know how I get on xx
self indulgence and tlc sounds like a good idea to me!
Hi I found 3 mg horrendous this time ( have been off steroids before) but feeling better at 2mg . I did have a low baseline cortisol test but between the rheumatologist and endocrinologist getting there facts wrong they declined doing an atch test , So I decided to try going lower after reading something pmr pro had written and I definitely feel better. We are all different but I thought I would let you know my experience
Definitely time to stop being stoic, be gentle with yourself 🥂
That’s my girl. Of course they are. We are all here for you,
I feel better already - thank you x
Good 🥂
forgot to say in previous post that endocrinologist raised my 3 mg to 5 mg to see if I felt better
And did you feel better? X
no! The endo did say if the 5mg didn’t work, I should wean myself back down to 3. But am hoping that guidance will come this week, even if it’s just a letter.
That's rotten! Be interesting to see what further guidance is offered.
I think it is the unanswerable question - I have been on steroids for over 6 years for GCA, have been on 5mg for over a year now & experience high levels of fatigue & still very much have to pace myself. This started at 8mg (the acute fatigue) did have the adrenals tested, no function which is not surprising at that level. Now at 5 had them tested 6 months ago & still showing very very minimal response. If I drop half a mill. I feel absolutely horrendous for 2 days, dizzy, body hurting, headache, even though I go back to 5mg the next day. I have almost given up trying to taper because the side effects are just too debilitating.
Was DHEA determined when your blood analysis was done? Mine was negative at the moment I could no more cycle uphills and my GP prescribed DHEA 8 mg/day. My rheumy agreed and my fatigue disappeared. At my minimal pred dose of 1mg/day I continue to take 4 mgDHEA/day. When last August we stopped DHEA for a month, it was clear I can not without it. So I continue with daily intake of DHEA 4mg/day and blood analysis shows that I really need it.
Being a bit dense, but what is DHEA?
Dehydroepiandrosterone DHEA is a hormone your body naturally produces in the adrenal grand.
Do you have breathlessness too?Drs are saying my fatigue could be carbon dioxide in lungs. Off t o hospital for tests today.
I do get breathlessness. It was worse on the higher dosage .
I went through it when hit 6mg Pred (albeit with 20mg MTX). Had to keep going because I work full time. It improved on its own as I kept reducing 1mg a month.
Wow that is going some! I was stuck on 4mg for 2 years - well done you
Thanks.I believe I manage due to MTX. At one point I was stuck and my reumy increased it from 15 to 20 (unlike Pred, side effects from it aren't depended on dosage).
Hi PoshdogMy adrenal insufficiency hit me like you at 1 mg.
When I got pmr over 7 yrs ago I read a study to stabilize for up to a yr at 10mg.
I know now it should be between 6-5mg because that's when they really kick in. I feel if I stabilize there for a year I may not have had such a hard time.
My Endicronologist wanted me a zero and I really suffered with adrenals. Felt like throwing up all day, couldn't move, stomach pains, worst sleep ever, constant napping.
If I had to do it again which I hope not I would stabilize for a long period of time for me at 2mg. For you it maybe 1 more mg allowing the adrenals to have time.
Everyone as you know is different.
Stabilised at 4 mgs for 2 years - all fine. Dropped very slowly to 3.5 but adrenals are not liking it. Have decided to persevere but adding tlc into the mix. Thanks for reply, the site is amazing.
First of all, what is your age? Cataracts are normal in almost everyone after the age of 72. My eye doctor told me that age 72 is the average age for cataract repair. Take a deep breath, and realize that cataract surgery is no big deal. My super healthy hubby, age 70 is having both eyes done this spring. I am 68 and probably having mine done this summer. I was prescribed glasses to buy me an extra year. They worked very well this past year. My eye doctor told me my cataracts were not prednisone induced. I have been on prednisone for 12 years. Being a caregiver is very hard on the person doing it. A doctor told me years ago: with prednisone always remember what it can do to you and what it can do for you. The dose you are on is not doing a lot of damage. The inflammation from the PMR is a lot more insidious.
I just want to express sympathy for you. My PMR journey has not included fatigue…so far. I can’t imagine how awful you must feel. Yesterday someone said that peeling an egg was exhausting. My heart goes out to you. Sending a hug from Alaska.
My first ever hug from Alaska - thank you. It is hard work but survivable especially when lovely people are on your side xx
I had to stop for a bit at 4mg and 1.5mg, but really, the fatigue has never really improved much at all, and if I had ever waited for it to go away, I would still be waiting! I'm still hoping that the crock of gold will appear when I'm off it altogether. But maybe you'll be luckier?
\"Deathly fatigue\"
Week 4 : 30mg dosage & Deathly Fatigue 
How long does the deathly fatigue phase tend to last when adrenals are kicking in at lower doses of Pred? 
