I have had PMR since NOVEMBER, 2014. Have been down to 3 and 1/2 mg. Up and down over 5 years. HIGHEST was 40 mg. Currently back up to 10 due to a flare. I also have fibromyalgia among other things. I seem to be able to do less physically every year. I have good days , my life has a new normal which has taken me awhile to adjust to, and bad days. Do any of you who have PMR feel you go down hill with each passing year or is it just me? THANKS ....Linda
of course the mgs I refer to is for prednisone.
Hi Linda I certainly feel that way. I have been diagnosed for 3 years, and spent 2 years before on and off Prednisone as they were unsure what was wrong. My tolerance levals for even taking a shower and washing my hair are bad some day. Bad days I spend laying on the couch and sleeping, good days I can manage to do perhaps to activities. Going out is pretty well non existent, especially on my own. I just get too tired. My new normal has had to be relearned, and it is staying at home, going to Drs. appointments, and now considering a retirement home. \\i am on 15mg prednisone, and decreasing it slowly. Seems to be going okay at the moment. Adjusting has been difficult but their is no choice. I have other health problems as well.
'Fraid so, but maybe it's because since PMR onset about about five years ago I've transitioned into my early 70s and it's old age....
YES! This is year 6 for me and its my worst year. My first 3 years I was able to stay around 5mg, Prednizone. The last 3 years I range between 10-20mg. Ive always been very active. Walking, cycling, swimming and kayaking. Well 2019 has brought on more than i can handle. My left hip area is so painful I'm in tears. I had gotten my pred down from 20 last fall to 10 in Feb. Then the hip kicked in. I cant seem to do anything except sit around to keep from hurting later in the day. Ive been to a physiotherapist, and upped my pred to 30. It seems to be ok for a couple days then all hell breaks loose. PAIN! I will return to my rhumy asap and see what he suggests! I totally understand your issues. I cant do anything at all right now, I just want to cry. Nothing is working!
YES! This is year 6 for me and its my worst year. My first 3 years I was able to stay around 5mg, Prednizone. The last 3 years I range between 10-20mg. Ive always been very active. Walking, cycling, swimming and kayaking. Well 2019 has brought on more than i can handle. My left hip area is so painful I'm in tears. I had gotten my pred down from 20 last fall to 10 in Feb. Then the hip kicked in. I cant seem to do anything except sit around to keep from hurting later in the day. Ive been to a physiotherapist, and upped my pred to 30. It seems to be ok for a couple days then all hell breaks loose. PAIN! I will return to my rhumy asap and see what he suggests! I totally understand your issues. I cant do anything at all right now, I just want to cry. Nothing is working!
Your situation runs almost parallel to mine Linda. I started on 40 mg March 2014. Thanks to a couple of flares and having to drop by .5 mg on the DSNS plan I've only managed to get down to 9.5 mg. That was in June last year. I didn't succeed in stayin there thanks to a minor flare, which I got under control fairly quickly. Then, thanks to a major flare earlier I had to increase from10 to 15 mg earlier this year. I only stayed at that level for 10 days and have made it back to 11 mg so far.
As for my ability to do a variety of activities, that's definitely deteriorated bit by bit. However, it might be from lack of effort on my part more than anything else. When I was diagnosed with PMR I was doing water aerobics three times a week. I was able to continue with that for more than a year. Then our local pool was closed for over 5 months due to a union strike. I know now I should have done something in terms of an exercise routine to maintain my level of fitness,. My muscles became much weaker. I have yet to get back to a constant routine to build them up again. I know it can be done.
When I reached about 15 mg, fatigue and lack of motivation held me back. It was a struggle some days to reach for my glass of water, let alone keep up with the activities of daily living and minor household or cooking chores. Fortunately, I have a husband who understands what I'm dealing with and is very supportive.
I still enjoy life to the best of my ability, but feel very frustrated at times with my new normal.
yes yes and yes. its kinda shocking. i look at my same age friends and get teary eyed. the longer im on pred, the harder it gets. and it aint for lack of trying or lack of motivation. to put it simply: i would if i could. some days, most days, its impossible to do even the basics. i just cant move at all. 2 years and 7 months since starting pred, currently at 5, but who's counting?
Thank you for responding. I REALLY appreciate it. MAY NOT be fun, but at least I know it is not just me.
THANKS! I am 73!
PAM, I always feel I may need higher doses. BUT at least prednisone helps!
YES, we sound very similar. FATIGUE can be overwhelming.
TWOPIES, I know what you mean when you compare yourself to friends your age. THEY can do so much. Ican do so little.
It's early days for you Twopies. Keep on trucking! Don't fret, it causes too much stress.😍 Too many of my friends are no longer alive to fight anything. I count my blessings as often as I can. Mind you I'm 70, so loosing friends is to be expected I guess. Sadly.
Hi Linda, as we get older we would normally slow down, I question myself constantly is it the PMR slowing me down or is it just my age. I don't have the answer. 🙂
No, it is not just you! Erika (USA)
Pam my hip was very painful for most of 2017-2018. My Dr. kept ignoring it until I finally insisted on an MRI. Prior to an MRI here they want a current x-ray. I went for it and the next day my Drs. office called to say that they had heard from the MRI clinic. The x-ray showed I did not need an MRI but that I needed a new hip asap. In Aug. 2018 I had a hip replacement and have had no hip pain since recovering from the surgery. I am 72 and I do not feel our age is the significant factor in our gradual decline in abilities. I think it is a consequence of the PMR causing such debilitation. I see many of my friends who are my age and they have much more energy and get up and go than I do. I am trying my best to enjoy my new normal.
I had an MRI last fall. It showed a possible tear in the labrum, nothing else, which the ortho dismissed. I saw a chiropractor and he ended up working on my piraformis. Now the hip pain is intense after a long day. I've never had morning pain with my PMR. I find it unusual. I calked my rhumy and insisted on an appt. and see him tomorrow. I asked for an xray and bloodwork before I come in.
Hi Pam, like Carol-Ann I had hip pain and my GP kept saying it was the PMR. In the end I went privately to an orthopaedic surgeon who said it is your hip even before he x-rayed it! Have you had your hip x-rayed at all? As Carol-Ann says you do not need an MRI scan.
I have an appt today and im asking for one! Let you know what is said.