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 andrew 40577
Yes, i experienced dreadful fatigue, lethargy and could not summon up the enthusiasm to do the things that i used to enjoy before taking pred. It is one of the many side effects of pred which can last throughout your pred journey. I had B12 deficiency which added to my fatigue and made me feel 'wrung out' as you put it which is exactly how i felt. Perhaps you could get your B12 and iron levels checked, but even though my B12 was brought back to normal levels, i still felt 'wrung out' but not as much....i do hope you can get some energy back it is awful feeling like that day after day....
andrew45077 mary19068
Posted
Thank you for the reply. I did have my B12 level checked and it was normal. I take B12 supplements.
lynda62707 andrew45077
Posted
hi Andrew...I second everything mary said! I'm not sure about my B12 levels. going to find out tho!
I've heard several folks on this forum talk about the great amount of energy they have (or had) from taking prednisone. this hasn't been my experience.
In fact, quite the opposite....lots of negative side effects, and very FEW positives (other than relieving some of the joint pain).
I was dx'd w/pmr. approx. 6mo ago....started on 15mg and after bouncing a bit up and down, am STILL on 15mg....due to go to 14.5 next week....Whoopie!😣
faye05942 andrew45077
Posted
Hi Andrew
Yes I agree the exhaustion is quite a challenge, I am on 8mg pred at the moment, my pain is not completely relieved either, but I think the pred is a very nasty drug with evil side effects I have it only 4 mths with severe side effects it has ruined my life I feel like I am a hermit thats going stir crazy, my doctor has put me on mtx and it has helped me bring the pred down. I started on 50mg I'm hoping to see the last of pred within 2 months... I have been diagnosed with RA and I think once I'm off all the nasties I will try natural methods to control the RA and hopefully the PMR will never rear it's ugly head again.
lynda62707 faye05942
Posted
hi faye....I concur! from what I've been reading over the past few months ("you should think of prednisone as your friend, a new normal, etc.)....I've not found it to be so!
I now feel I've got myself caught in a "spider web", one that's gonna take alot to get out of!!
side effects have been (and continue to be) horrendous....weight gain, profuse sweating, an emotional wreck, severe fatigue.....on and on and ON!!
I don't know where all rhis goes from here....I just want to wake up from this nightmare!!
Vicki200252 lynda62707
Posted
Hi Lynda
Your description is spot on.
I shocking sweats all day, is yours the same. Also severe fatigue.
I had a sweating moment at docs earlier today and I brought out my fan and she assumed it was menopause, I told her no I have finished in that department years ago., she said oh, how long have you been like that and I felt like saying , "ever since you started mucking about with my medication"
My appointment with opthomologist was yesterday as I previously discussed the other day and good news, she is pretty sure I don't have GCA.
I finally have appointment for Rhumy November 16
All the best
Vicki
lynda62707 Vicki200252
Posted
Hey Vicki....1st, such great news you've not got GCA!!
2) yes on the sweats ALL day (and night). it's absolutely ridiculous!! I have my nails done once a month (in an air conditioned salon), and "my lady" STILL gets a small personal fan out and turns it directly towards my face as I'm always dripping w/sweat....sooo embarrassing AND uncomfortable!
3) I'll be having cateract removal surgery soon as I've git an extremely rapidly growing and complicated cataract due to the prednisone!!
4) I cry at the drop of a pin (and I'm normally a very happy, funny person)....
well, the list just goes on and on!
I should have listened to my "gut" when I was 1st advised I needed to be put on a steroid....too late now....but I'm afraid my life is now forever changed!
Vicki200252 lynda62707
Posted
Hi Linda
My heart goes out to you it really does.
Hope your eye op goes well, I would like to know how you get on because 1. I care and 2. yesterday I was told I had it in both eyes slightly.
It has to be PRED as I had an eye test in early AUGUST this year and no signs then, thats only 2 months.
DEPRESSION is one of the side effects , get that looked at as it will get worse if you don't.
Once you do that you will go back to the funny Lady your supposed to be.
margaret22251 faye05942
Posted
Hi faye, when did you start with pmr.
you say you are at 8mg, but started on 50mg ?
i have had pmr for over four years, and still on nine mg, also i take mtx, and have been on this for 18mths as i have RA as well.. Both might be nasty drugs, but they have given me a life back, i know i cannot walk the fells,and do the three peaks any more but i am alive, iknow its hard for us not to be able to do all we did when we were younger, but my way of thinking is theres a lot worse illnesses i could have.
i am sure Eileen will be along to advise you.
take care mad mags
faye05942 margaret22251
Posted
Hi Margaret
I was diagnosed with PMR in June this year, started on pred straight away, 50mg for three days then 25 for 1 week, then 20 for 3 weeks, I went back up to 30 . I was not displaying the normal for PMR so I Jumped ship and got a new Specialist who stated because of the side effects to the pred and a few other things that were presenting, he has put me on mtx for what he believes to be RA. He said that original PMR was probably correct but it is morphing into RA . Pred. has stopped me in my tracks, I struggle daily with an assortment of side effects and I still have pain !! so the quicker I get rid of the pred the happier i'll be. I wish I had known the side effects were going to be so bad I would never have taken it. But it is what is so I will fight on and win the battle if not the war.
Cheers...
lynda62707 faye05942
Posted
hey Faye...Lynda again.
I'm not a doctor, but I'm REALLY concerned about your first several weeks on prednisone. I believe in almost all initial dx of PMR, the initial dosage of prednisone is btw 15-20mg to start. then a VERY gradual taper for weeks (or months). if you started at 60(??) then went down to 25(??), that seems incredibly WRONG to me😱.
However, it is what it is....now you've got to deal with what IS! (I'm so GLAD you've got another doc, good for you!)
I'm in there with you my friend, trying to get off this nasty drug ad quickly, but SAFTLY as is possible!
good luck to you!🍀
faye05942 lynda62707
Posted
Hi Lynda
I hear you, I'm all for getting off the nasty drug, I wonder what it is doing to our internal organs especially when the side effects we see are awful.
good luck !!
EileenH lynda62707
Posted
Patients for whom there is any suspicion of GCA will be likely to be started at 60mg- because the ultimate risk of GCA is blindness. Once it has happened there is no way back. No pred side effect is worse than that.
Vicki200252 andrew45077
Posted
it is horrible to feel exhausted all the time, I am the same and I hate feeling that way also.
I have found talking to people on this forum so good, simply because I don't feel alone.
Apart from the doctors, if you try to explain PMR to anyone that doesn't have it they just don't understand.
andrew45077 Vicki200252
Posted
Believe me I understand. I also don't get much support from friends or from anyone to whom I try to describe this disease. No one I've ever spoken to has heard of it. I feel like I'm living alone on the island of the damned. I wish there was a support group where I live in the U.S. where I could see people face to face but I've yet to find one even though I live in a city of over 5 million.
lynda62707 andrew45077
Posted
hi Andrew...I too live in US, San Jose,Ca to be precise!
I'm w/you. I wish there was more information here, (and would Love to meet face to face) about PMR!
I hadn't heard of this disease (prior to being dx'd), much Less my family/friends....even my primary doc was kinda clueless and promptly referred me to a rheumatologist!
so yeah, how does one begin to explain what they're feeling, when this seems to be such an unfamiliar disease??😭