I was diagnosed with PMR 6 weeks ago and am on 30 mg prednisone. I take it in the morning with breakfast and can't do very much of anything for several hours as my arms, hips and legs are so achy and sore. After lunch, I feel much better and that lasts until evening. Is this going to be my life?
I'm sorry you had to join the club. Usually, if you take the correct dose of steroids, you feel pretty normal. Actually, I felt great, and didn't have any side effects. It's only now that I am down to 3mg that I'm pretty tired. I'm not sure why because I don't have any pain. But this forum is great for us, especially if we have a doctor who doesn't know much about PMR.
Hi Wilma, I would split the dose of 30 mg.....take 15mg at night, and then the other 15 mg in the morning. You will not feel so achy in the morning.
I tried the morning dosing, and I did not like it. I am a morning person and want to get going and be active right away.
This is my second year of PMR, and I am on 7 mg of prednisone trying soon to reduce by 1/2 mg a month to 6 1/2. It is a SLOW process, but necessary to avoid a painful flare.
I wish you the best. PMR is tough to deal with especially the fatigue which goes along with the muscle inflammation.
Sorry to hear of yet antoher one diagnosed with PMR. I am not sure that I can help you, but there are a lot of people on here with lots of experience with this. I was diagnosed about the same time as you. I am on 20 mg daily and methotrexate once a week. I am beginning to wonder if my dose should be higher. I really never have a pain free day. Each morning it starts over, some days worse than others. I am curiouls abou the mornign and evening dose. I might ask my doctor about doing that. If that would mean that I would wake up in the monring feeling good, it woudl be great. I am also curiousl how so many of you reduce by 1 or 1/2 mg a month. I am thinking that you are all in the UK. Here in the U.S. it seems that doctors want to do it by 5 mg at a time. I am due to begin dropping by 5 mg in another week and a half. I cannot imagine doing that as I am still in pain, particularly my wrists in the morning. I ahve enough prednisone left before my next appointment to just stay on the 20 mg until then and talk to the doctor about it. I hope that you are feeling better soon, Wilma. I have a friend who was diagnosed about three weeks before me and she is down to 10 mg and feels great. I think that she is a very unusual case. I am sure hopiong that she doesn't have flareups. She is convinced that in a few weeks she will be done with all of this. I am hoping she is correct. I have not told her of what I have learned on here. Does anyone kniow anyone who has progressed as quickly as that?
Hi Wilma, Welcome. When I started on 40mg of Pred just under a year ago now, I too was told to take them in the morning with food. Like you, it took me until late morning to really get moving. As I have to work, I need to be firing on all jets by 9am. I tried splitting my dose as per the docs advice but neither dose was then high enough to do the trick. Then I read on this forum and elsewhere that the optimum time to take Pred is in the early early hours of the morning. As 4am (ish) is my usual toilet wake up time, I started taking my pills then. Then back to bed for a snuggle down for a bit more sleep. This has worked perfectly for me. I just have 2 or 3 spoons of Greek yoghurt, the pills and then back to sleep. By the time I rise at 7.30, everything is calm and pain free. I have also heard some people take it before bed but if you are one of the unlucky ones that Pred keeps awake, that's not such a good idea. On saying that, several hours of achy pain a day seems a lot and maybe you should have a chat with your doctor again. Especially as you are relatively early into diagnosis and on a higher end of Pred dosage. The thing you will find over and over is that we are all different. We react different to the pmr and also to the Pred. Good luck! x
I too have terrible fatigue, not sleep deprived tiredness, but low energy, fatigued, although 75% of all pain is gone. Drs. weaning down on 15mg. now, hoping down to 10mg. or lower, reducing by 1mg. per week.
Welcome to the club nobody really wanted to join! Others have said it already - We are all different - so when you find the correct dose at the correct time(s) stick to that. Don't let the MD push you to lower your dosage too quickly as you will likely end up having to go back to square one, just take it steady. A good rule of thumb never reduce by more than 10% at a time and even then do it over an extended period.
If you get any 'problems' there are lots of 'experts' here, we are not doctors but people who are or have been through the same concerns as yourself.
Best of Luck and welcome
This sounds so perfect, but I have one concern. When I first went on the Prednison, my rheumatologist was so adament that I really eat before taking it. He also has me taking Pepsic 15 mintues to one hour before my dose. He keeps saying that the Prednisone can really tear up one's stomach. My pharmacist seems to agree. I would love to take it when I get up for my bathroom break at night as I would probably avoid all of the early rising aches in my shoulders and wrists. Has anyone else taken it with just a few spoons of yogurt or such? I am very interested in trying this. Thanks, Karen
Yeah, I don't know why this tiredness suddenly kicked in
I feel normal in the afternoon/evening. It's just getting thru the morning that's tough. I think it will be a long time before I am to the dose you are on. Someone suggested I take my dose earlier, like 4am, and I'm going to try that. I usually wake up about then and then go back to sleep for another hour or two.
Thanks Erika. I'm going to try taking the dose even earlier in the morning. If that doesn't work, I'll try splitting it.
Hi Donna, I have noticed in this short time that some days are worse than others and I can't figure out why. I just know that most days it takes about 3 hours before my legs stop hurting enough for me to move around.
Hi Karen, I really like your suggestion and I'm going to try it. It makes a lot of sense. I usually wake up about 4 am and then go back to sleep So I will eat a little something and take a pill at 4 then go back to bed. That may do the trick! I sure hope so. I really am frustrated with spending half the day just trying to exist.
Thanks for the encouragement. The diagnosis was a shock, I didn't know anything about PMR! This all came after a bout of the flu followed by a 4 month ear infection which ended with the insertion of an ear tube. About the end of the infection, I started getting sore and achy and extremely tired. I thought it was all related to the ear infection. The doctor said he suspected PMR and a blood test confirmed it. At least the ear infection is gone, now I have to deal with this!
That's a bit odd as there is no blood test to confirm PMR. The key really is a prompt response to a moderate dose of prednisone. How long, I mean days, after starting pred did the pains go away? Have they gone away enough for you to live a normal life? If pred hasn't done that for you I'd be tempted to ask doctor to investigate further. Was your initial pain bilateral (equally or nearly so on both sides of the body)? Because that's also a good diagnostic indication that the pain is PMR. Elevated inflammation in the blood could be PMR but it could also be from the lengthy infection you suffered.
Sorry I used the word "confirm", I am so new to all of this. The blood test suggested that PMR might be what was going on. My sed rate was 130. My initial pain was bilateral and I also had a low grade fever for at least two months. I had/have fatigue, anemia, loss of appetite, weight loss (9 pounds) quickly, pain, it is worse in the morning. This was going on while I was dealing with an ear infection and massive head congestion, so I thought it was all related. I guess one triggered the other.
Oh okay, that makes more sense. I do hope you feel better soon.
I was diagnosed with PMR about one year ago. Have tapered to 7 1/2 mg a day but am having difficulty with hip girdle. I now waddle or toddle and balance is a problem. The hip girdle pain can be very severe. I am now seeing a rheumatologist who may switch me to methodrexate. I have found swimming in the morning and doing Tai Chi exercises in the pool to be the most helpful. I can actually feel almost normal after I exercise.
Donna, I too am in the US and have had trouble finding PMR patients to discuss problems with. Have been very discouraged at times. Diagnosed one year ago with classic symptons in arms, shoulders and neck. I can now move my arms normally but it seems to have settled in my hip girdle so that at times I cannot walk the pain is so severe. I have found exercising in the pool and swimming laps to help. Presnisone has been at 7 1/2 mg for several months and I have now seen a rheumatologist (switched from internist) to see if I can get more specialized help. Seems like UK is more up on this than USA!
Hi Kitsalley, When I first found out about PMR, I looked it up and found that most afflicted are females over the age of 60 who are of N. European extraction. My roots are primarily of the British Isles with one grandparent from Sweden. I am thinking that perhaps this is why there are so many on here from the UK. I think it is more prevalent there due to their populationg. Anyway, I have not found much support here either. I am going to look into the possiblity of pool activites and Tai Chi, that sounds promising. I do not have the hip pain. Mine began in my thighs, upper arms and shoulders. Now I have a lot of pain in both of my wrists in the morning. My arms are soemtimes a tad sore, nothing like they were in the beginning. My legs are fine. I do have restless leg syndrome, but I have had that for forty years. Not sure if others have that too or not. I also have a tear in the rotator cuff of my left shoulder. A cortisone shot a month ago took that pain away. I know that this may come back, I am sure that it will. I am trying to avoid surgery. I had a bad fall where I landed on all fours. That was when it all began. I really jerked the muscles in my back. They were sore for a week or so, then the pain began in the legs and shoulders. My rheumatologist said that this could have caused the PMR. I am sitll on my dose of 20 mg and taking Methotrexate once a week. I will take my second dose of that tomorrow. I am supposed to reduce the prednisone beginning next week to 15. If I am still having wrist pain in the morning, I think I will wait until I see my doctor on the first week of August. I am so sorry to hear of your hip pain. That has got to be awful. I am very grateful that nothing in my lower body aches now, just some pain in the arms, mostly the wrists for a few hours each morning. I hope you will be feeling bettetr. Donna