New patient, seeking answers
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
Anniecurd wilma80366
Posted
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.
reggie92967 Anniecurd
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Anniecurd reggie92967
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Yeah, I don't know why this tiredness suddenly kicked in
wilma80366 Anniecurd
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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.
erika59785 wilma80366
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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.
wilma80366 erika59785
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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.
donna60512 wilma80366
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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?
wilma80366 donna60512
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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.
kitsalley donna60512
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donna60512 kitsalley
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wilma80366 kitsalley
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I'm also in the US, and am so pleased to find this group. I haven't been able to go to the gym for several months but exercising in the pool sounds like a good idea. The gym I belong to has pool classes for people with arthritis. I might be able to do that.
wilma80366 donna60512
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donna60512
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I need to quicly correct what I wrote. I do not know why I said I had not found help here on this site as I have. What I meant is that those in the UK have a much better grasp of PMR. I find that I am floundering as I know that our system of medicine is different and our insurance plans dictate what the doctors can do. I hope that anyone who saw that I said it wasn't helpful see this. :-) Donna
donna60512 wilma80366
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I am what I consider to be a very young 79. I have always been very active. I was walking nearly five miles a day. Thanks to my Fitbit I just kept going. I have had to slow down sadly and my Fitbit is showing that. I would be interested in the ethnicity of others since finding this out. I have seen a couple of males on here, that's all. I do know of a couple of women who are much younger. My own children have some Hispanic in them, so I am hopong that they will be protected. LOL Have a good evening. Donna
erika59785 wilma80366
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jeannae68307 donna60512
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erika59785 kitsalley
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donna60512 erika59785
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wilma80366 erika59785
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track donna60512
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Found it interesting re Patients over 60 having European heritage etc with PMR. I read an article which stated the same possibility. I am in Australia and my Heritage was a gg Grandfather going to Ireland from Europe, then coming out to Oz in the 1800's. My DNA states, 100% European. Also I read another article of a Town in USA which is has mostly Scandinavian people living there, (sorry I cannot remember the town's name), and they all suffer from PMR, even the younger ones who are being born in this town all end up suffering from PMR when they become older. I found this very interesting.
So maybe some of us can blame our heritage and descendents .
kitsalley wilma80366
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And I'm in SC, Columbia and often at our moutain cabin where it's a bit cooler!
erika59785 donna60512
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I used to live in San Clemente and the Central Coast in San Luis Obispo. I LOVE California. I moved to the rainy Pacific Northwest because of family in Vancouver, Washington. There was a grandbaby to take care of which I have enjoyed very much.
Oregonjohn-UK erika59785
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Come on Erika you love the rain really!! If you don't think you get enough rain try England!! Drive to the other side of the Cascades it usually dryer there!
Regards, John
donna60512 track
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Oh, my that is very interesting about the town of Scandanavians. I am wondering if it is in Minnesota. I do not know of anyone else in my family who has suffered from this, however, I have made it to a very healthy otherwise age of 79. I have only had one great grandparent who made it to an older age. All of my family, sadly, did not make it much past 70, so would be hard for me to tell on that score. Oh, I did have one aunt who lived to be 90. She may have had PMR, I just don't know. My heretiage is mostly Scottish and Irish, with the one grandmother from Sweden. I have not done the DNA, I have been tempted to do so. Have a very nice day, Donna
donna60512 erika59785
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erika59785 donna60512
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I am on 7 mg of prednisone.....still have some lower back pain, but I do not want to increase prednisone. I have been on it for too long. My RA doctor tells me to reduce by 0.5 mg a month. She is good.
She told me to take Tylenol when in pain, which I did this morning.
I feel alright until late afternoon, but then I sit a bit more.....and then nothings hurts. :-)
erika59785 Oregonjohn-UK
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I like the cooler weather, but do not like the rain!!!
Oregonjohn-UK erika59785
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Well done if you are down to 7 - wow single figures!
I'm on the slow downward reduction, taking it very steady have just got down to 2 from 2.5 over a month. You know my motto - 'the tortoise and the hare, tortoise is the way to go'
Have booked to go on vacation in a weeks time so am sticking at 2 for a while, glad I booked some time back as the good old British pound has fallen a bit since Thursdays vote to leave the EU. Say no more it's very political here at the moment, people resigning from both the government and the opposition parties - a right mess!!
donna60512 erika59785
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I am eager to talk to my rheumatologist, but that is not until ealry August. I am on 20 mg. My wrists are just horrible at times, today is one of htem. I probalby should not be at the keyboard now. I am using a carpal tunnel mouse pad and that helps a bit. I am suppoed to start reducing by 5 mg. I am not going to do thas since the pain is so bad in the morning. I used to be a morning person and now I can't get much done until noon. Since I live in a hot climate, that just doesn't help much as I am less interested in doing things when it is hot. Well, I do have AC, but try to conserve energy when I can. Your view sounds amaing. :-) Donna
erika59785 Oregonjohn-UK
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donna60512 erika59785
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