PMR Exhaustion
Posted , 18 users are following.
I've had PMR for about 10 months now. I was started on15mg of pred and am currently taking 7mg/day. My pain is not completely relieved, especially in the morning, though it is not unbearable. My main issue is chronic exhaustion day after day. I am wrung out to the point where I just don't feel like doing anything and that has severely constricted my life. Has anyone else experienced this and if so is there anything that can be done about it. For me, it is really horrible to have to live this way.
0 likes, 72 replies
mary19068 andrew45077
Posted
Hi andrew45077
If you don't mind me asking andrew45077 how old are you?..the reason i ask is because if over 55yrs B12 supllements and food containing B12 rarely absorbs through the gut into the ilium and on into the system. This is due to a protein in our gut called 'Intrinsic Factor' which helps, along with 'Paletial Cells,' to absorb B12, begins to decline as we age. Also meds such as Metformin taken by Type 2 diabetes patients and PPI's for stomach acid , block B12 absorption. Did you view the results of your B12 blood test?.. if you are over 55yrs and they were below 500 then that is low. If your levels were 200-300 doctor will tell you it's normal, when it's not for over 55yrs. The levels for over 55yrs should be between 500-900.....Did you have your iron levels checked aswell?.....
Anhaga andrew45077
Posted
Ah, the deathly fatigue which strikes us when we get down to the physiological level of cortisol our bodies usually produce! I was completely flat at 7 mg. With some people it happens even higher level, like 8, and others don't seem to notice it as much, but it is a very common thing to happen at this level. The answer, provided your PMR symptoms are still in check, is to slow your tapering down to practically nothing. I tapered by about 1 mg a month, but I did it in two steps, by doing the first half of a dead slow nearly stop taper with a .5 reduction, then dropping a second .5 reduction for the next two or three weeks. As I got even lower I would only drop .5 per month or six weeks. I remember gradually starting to have fleeting moments when I felt nearly normal again but it took a very long time before the deathly fatigue was mostly in the past. I still get hit with it occasionally (after two years mostly at 2 mg or thereabouts) if I've been especially busy or stressed, but now I'm generally much better at pacing and don't let it happen. Provided PMR itself is controlled I personally think it's counterproductive to increase pred dose, because that just allows the adrenal glands to continue to slack off.
If you don't start to notice an improvement after a few weeks, or if your symptoms become more serious, then you must seek a synacthen test to make sure your adrenal glands are still capable of producing cortisol. Most people will be all right, but it can take a long time for these glands to get back up to speed.
lynda62707 Anhaga
Posted
hi Anhaga, when you're lucky enough to get down to 7-8mg (or even 2 as you have), do all the extreme negative side effects gradually disappear, ie, profuse sweating, easy weight gain, emotional rollercoaster etc??
I'm trying to be patient, but finding it very difficult!
Anhaga lynda62707
Posted
I had different side effects and yes, they do seem to have gone: increased ocular pressure, increased blood sugar, possibly bone thinning, wretched stringy hair, little purple marks on my forearms. Emotional roller coaster? Not so much. No sweats, no weight gain, in fact have lost even more than I had lost pre-pred. So there you go, we're all different!
henni05917 andrew45077
Posted
I was diagnosed 3 months with PMR also and started with 15 mg of pred. Now after 2 months at 10 mgs and I feel like a dishrag. In between this I had surgery and developed pneumonia to add to the mix. Just feel totally dead. So my sympathies are with you. I cant wait to be done with Prednisone.
vawils andrew45077
Posted
Nothing really to add to this stream of messages other than to concur with those of us who find exhaustion and physical weaknesses a continuing struggle. The descriptions of the symptoms already givin by Andrew, Raven and many others are very real to me. I am 4.5 years since onset and now at 4 mg day but struggle with exhaustion and lack of will power to do physical activity most days and sometimes severe exhaustion that comes and goes. I sometimes equate it to a roller coaster ride because then i will have a period of a few days to a week when i feel more energetic etc. Been trying to reduce below 4 mg for a year without success..
Relative to the exhaustion and tiredness my frustration comes with my rheumatologists who don't seem to understand or believe that it is a symptom of PMR or something to be concerned with and don't provide much support.
Anyway all has already been said on the other posts but it is interesting and supportive in its own way to see others dealing with the same issue and all of us doing the best we can.
EileenH vawils
Posted
At 4mg pred it is more likely to be poor adrenal function and you require a synacthen test to establish whether your adrenal glands are CAPABLE of producing cortisol. They may well not be and then you have to reassess the next process. If they can, then it is a case of patience although being able to produce cortisol and doing are so are two different things. 4mg is the dose at which it makes sense to do a synacthen test, the results are difficult to interpret at higher doses. If they can't produce it - then you may need to see an endocrinologist for advice.
henni05917 andrew45077
Posted
l too am exhausted. Do you get terrible headaches from the prednisone also. l can't wait to get off this garbage. l believe the prednisone is wearing me out not the PMR.
lynda62707 henni05917
Posted
henni, Lynda here...I too have constant, everday headaches! Am very lethargic and have a MIRYAD of other side effects from prednisone....INCLUDING a 47lb weight gain since mid-Aug!! my life is outta control!
henni05917 lynda62707
Posted
Omg how long and how much pred are you on? I started at fifteen and felt good. down to 10mg now and feel like crap. l did have pneumonia to complicate matters so it may be why l feel this bad. l eat a lot more on the pred but so far l have gained maybe 5 pounds. l can't wait to be off this garbage. l am following Doc's instructions on tapering.
A lot of folks on the forum seem to be doing their own way. Are you ?
lynda62707 henni05917
Posted
hi again henni...I started on 15mg in May this year...bounced up and down and have been Back on 15 (til tomorrow when I begin taper to 14.5).
I'm following exactly w/Rheumy...not at all on my own.
I've Never had a weight problem so this is BIG NEWS to me!!!!😱😱😣
I eat LESS than ever before cuz I'm so nauseous most of the time...go Figure!!
I've been told I'm Super steroid sensitive! Ya think???###?
all I know is my life has changed dramatically over the past 6mo...it's so outta control. I want off this stuff just like you!
please keep in touch....
EileenH henni05917
Posted
If you want to be off "this garbage" as you call it, then there is no problem. You can reduce steadily and stop taking pred altogether. What WILL happen if the underlying autoimmune cause of the symptoms we call PMR is still active is that all the symptoms of the PMR will return in force. The only successful way of managing the symptoms is the right dose of pred.
You always have the choice: take the right dose of pred or suffer the symptoms. No-one forces you to take pred - but I imagine you felt ill enough to seek your doctor's advice and wanted treatment? All the pred does is reduce the inflammation to allow a decent quality of life in the meantime, for 95% of patients the autoimmune disorder will burn out in up to maybe 10 years although well more than half will achieve that in 5 years or so. Bear in mind though that unmanaged inflammation is also doing damage to your body - and the pred does reduce that risk.
There are 2 sides to reducing pred: one is tapering the dose to find the right dose for you to manage your symptoms and that means you have to do it in small steps to identify the right dose more exactly. The other is to reduce the dose steadily and stop taking it - and if you want to stop, then you can do that and ignore the return of symptoms. You may have some fatigue problems until the adrenal function returns to normal and it does take at least a few months to get over being on pred - but you will be off pred if that is really what you want.
margaret22251 EileenH
Posted
Eileen, just read your reply to hennie, think i will stick to pred. I am having a hard time reducing from ten at the moment, i got to eight and the pain was awful in my neck etc, pain in right temple and ear aches, even a little jaw ache, but since i went to nine, and have been there a month its all easing, problem is i am now jittery about going lower. on holiday for two weeks in beautiful Northumberland, so will wait till i get home before trying to reduce again.
Anhaga margaret22251
Posted
That is wise. You are now below 10 so approaching the level where any side effects will reduce, and it would be a shame to upset things and have to go up again. I hope you will use one of the slow taper plans when you attempt 8 mg?
margaret22251 Anhaga
Posted
yes i will use the dsns method, many thanks