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.
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....
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!😣
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.
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!!
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.
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
Most of us have same issue - exhaustion. How do you handle it? Two methods - pacing yourself and not doing too much. If you have overdone it, then take a brake and rest - recharge. I can work in a yard for several hours, take a sower and then take a nap...After that I am ready for whatever is next on "to do" list. Some of the comments mentioned that pred causes "surge" of energy. It could be true, but everything is relative... Before dx I could not do anything and spent most of the time in bed. After I started pred, all of sudden I felt the pain go away and that optimism gave me surge of energy. It is common and usually people go overboard and do too much... and payback next day. So, pacing and rest is the key. Know your limits... As you reduce dose, for me 6mg and below gave me even more energy back, but still I take nap after hard(er) workout or yard job.
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!
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.
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
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...
Andrew,
Yes, the exhaustion issue can be very limiting and frustrating. I think that Nick's comments about rest and pacing ones self are very on target along with the rest of his message.
I've had diagnosed PMR for almost exactly 2 years and am currently at 8.5 mg of prednisone. I'm 63 and have managed to continue working a 5 day week. It hasn't been easy but over time I've adapted, taking more breaks, knowing my limits, etc. Over the 2 years I've had to be constantly adapting and adjusting my life to accommodate PMR and Prednisone. I've become very sensitive to what my body's telling me and not trying to be what I was prior to PMR.
"Prior to PMR" - the life I used to have. Yes, I occasionally mourn the loss of that lifestyle but more importantly I have accepted that my PMR life is what I've got. My exhaustion can be extreme at times if I don't behave and then it'll take days to recover to a "normal" level. Now days I sleep and nap whenever time and place allows. Sleeping isn't just for nighttime anymore!!
Everyone is different with PMR. Some have all the side effects from prednisone while others have very few. Some are able to reduce on pred quickly while others feel stuck at a high dose forever. I notice that when I start dropping my dose to the next level, that's when my exhaustion becomes more pronounced. After 2-3 weeks of gradually settling in to that dosage level the exhaustion doesn't seem quite as bad - IF I'm paying attention and not overdoing it.
Some people like Michdon are fortunate and are able to rigorously work out, bicycle, ski, etc. Others are exhausted screwing in a light bulb. I remember about a year ago that I noticed that Michdon and I were at the same dose level. I see now that he's around 6 mg or less while I'm still up at 8.5 mg. To me it doesn't matter how quickly I reduce - just so I don't flare up time and again.
Our choices are pretty few. First, we can accept that this is the new life. The old life is gone but hopefully it'll come back someday if the PMR decides to go into remission.
Second, we can take pred to deal with the pain, be reasonably comfortable and deal with the side effects as best you can.
Third, we don't have to take pred, so we don't have side effects, but be an invalid from the pain for the most part. That's about all the choices I see. Take care and good luck.
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!🍀
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 !!
Excellent description of what the life with PMR is... pacing, resting, adapting to new normal and listening to your body. Given the choice between side effect of prednisone with somewhat normal life or debilitating pain I choose to live with pred.
I second everything Nick67069 said. A really concise description of life with PMR, Raven. Would you mind if I printed it, It would be very helpful to show to some friends?
Exhaustion !!!! I think I might have found my cure for it !!!!!! I am so over the moon at the moment I am almost scared to talk about it in case it fails me. I have had Fibromyalgia for 22 years and Poly for about 3 and 1/2 years. I had been deteriorating for months again. We thought it was a Fibro flare. On the 22 anniversary of Fibro , I had a 2 year old tantrum, I went away for 2 months. I rested, did what I wanted, when I wanted. When I came home I was so frustrated, because of the pain (probably Fibro pain) and the never ending exhaustion. I decided that I was going to take pain killers every 4 hours, 24 hours a day, until I got the work done which I wanted to get done. (I have only taken these in the past when pain gets unbearable-probably due to fibro) It takes 3 doses over 8 hours to get any relief at all. 6 tablets and 8 hours of pain I took two pain killers before I started work !!!!!! I had intended to take them every 4 hours, but i got working and forgot to take the next lot. 6 hours later I was still working !!!!!! I had no extreme pain and I still had energy. A first in many years. I felt surreal. I could not believe it. I have been experimenting with this for a month now. Fibro came with exhaustion too, so I was going to post this on the fibro site, but when I saw Andrew's message I decide to put it on here too. Extreme, unbearable pain always has set in after a couple of hours in my garden. For a month now I have been doing about 6 hours work a day with acceptable pain, but without the extreme exhaustion. !!!!!!!!!! I am in shock I still wake up every morning feeling, stiff, sore, achey and unmotivated. The pain is within the bearable limit tho. I still have to talk myself into getting up and getting started every day. I take my pred, anti depressant, and 2 painkillers. 20 minutes later I start work. Even if I am not feeling great at the time, once I start to get more energy. It really is unreal. I do not need any more painkillers other than the 2 in the morning. I go to the Dr tomorrow to get her thoughts on the subject. It will be interesting if some of you try it and see if it works for you too. Just take 2 tablets before you start something which will normaly exhaust you. Fingers crossed that it will work for some of you.
Hi nick67069
That is good advice nick about pacing yourself, but in my pred days i couldn't summon up any energy to do anything anyway. So for me it was a question of trying to shift myself and doing whatever i wanted to do in the first place. So pacing myself didn't come into it. I'm sure for many others on the forum this is their case scenario. The spirit was willing but the flesh was extremely weak!...i really feel for all of you in that situation and sincerely hope you can all regain your energy as soon as is possible....bless you all..
What sort of painkillers are you taking?