Posted , 13 users are following.
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?
0 likes, 64 replies
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karen48559 wilma80366
Posted
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
donna60512 karen48559
Posted
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
wilma80366 karen48559
Posted
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.
karen48559 wilma80366
Posted
Totally agree Wilma, it's a very frustrating condition. I think the most valuable advice I got from other people on this site was always listen to your body and never be afraid to ask. Someone out there will have a suggestion for you based on their experiences. In amongst it, there will be something that works for you, You'll probably find as you work your way through the comments that most of us manage our own condition based on our body's reactions, hopefully with our doctors' blessing. Good luck.
karen48559 donna60512
Posted
Hi Donna, Some people use proton pump inhibitors, others seem not to. I did when I was on higher dose of Pred but don't any longer. Pred can be hard on the stomach in some people this is why it's also not advisable to take NSAID painkillers whilst on Pred. The duration of action of the type I took was 20 hours. I took it with breakfast. It may tell you that information on the data sheet which comes with the product or you could ask your pharmacist.
jeannae68307 karen48559
Posted
I found that manuka honey worked better for me than proton pump inhibitors because they dried me out too much. Manuka completely healed my gut when the pred had me on fire. Expensive but worth it and doesn't come with the side effects.
donna60512 karen48559
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wilma80366 karen48559
Posted
Hi Karen, I tried your suggestion. I woke at 3:30 this morning and ate a little yogurt, took my pills and went back to sleep. I slept a few more hours and knew when i woke up that my legs weren't hurting. When I got up, I was normal!!!!! No achiness, no soreness. I hope it lasts all day. This is wonderful.
donna60512 jeannae68307
Posted
karen48559 wilma80366
Posted
marian-colorado donna60512
Posted
That should be enough to line the stomach
erika59785 marian-colorado
Posted
donna60512 erika59785
Posted
erika59785 donna60512
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Oregonjohn-UK wilma80366
Posted
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
wilma80366 Oregonjohn-UK
Posted
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!
Anhaga wilma80366
Posted
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.
wilma80366 Anhaga
Posted
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.
Anhaga wilma80366
Posted