I'm new at this PMR thing. Diagnosed in March. Have had days where I feel "almost" normal. Then get kicked back to feeling like a train wreck.
Now I have this swollen vein at the base of my right thumb where the pulse is. Looks like a small marble and is sensitive to touch. I have neck/clavicle/shoulder movement pain that gets really bad on the bad days. Is this the PMR or something else?
Im taking only 6MG Pred a day which I know is quite low, I feel it is a trade-off to have some bad -day PMR pain and discomfort in exchange for the lesser Pred side effects (which have been severe for me in the past when used to treat bad allergies).
I hate this. I just want to feel like "me" again.
I'm so sorry for all of you who are struggling with this. If I'm feeling this miserable, I can't imagine what you are going through.
blessings to each and every one.
Oh what a lovely thought, 'to feel like me again'!! After 4 years I'm beginning to wonder what 'me' is.
Very unusual starting dose of pred - the lowest I've heard of! After all this time I'm still on 7 mgs.
All the best. Constance
One thing I have quickly discovered is how individualized our symptoms can be but how there is at least someone else in the forum who has experienced that symptom. They skipped past PMR with me and went straight to GCA since I had Positive biopsy for GCA. I have had no symptom below the neck..all jaw and horrible headaches. Somehow I escaped the vision issue as well.. Got pred fairly quickly. I do understand your misery completely. I do not expect to feel normal for a year... Any sooner and it will be a gift. Take good care, Ann11195
Maggi, I'm sorry to hear that you have experienced severe side effects to Pred for allergies in the past. However, if you have a definite diagnosis of PMR, then the 6mg starting dose is unlikely to get and keep control over either the inflammation or the symptoms. If that inflammation is not controlled you run the risk of succumbing to the linked condition, Giant Cell/Temporal Arteritis, as well as many other serious illnesses. 15mg is the usual starting dose for the treatment of PMR, at the very least 12.5mg.
Were you someone who had raised ESR and CRP blood test markers at diagnosis? If so, these tests should be repeated to see whether they are improving, especially as it doesn't sound from what you say that your symptoms are improving.
Do your "really bad days" follow a day when you have felt a bit better so have overdone things? If that is the case, then you need to pace yourself and have plenty of rest if you wish to get better, especially as you aren't taking sufficient Prednisolone to reduce the inflammation.
Thanks MrsO. I did have a slightly elevated ESR (37) and all the classic symptoms of PMR. The rest of my blood work was normal.
The diagnosis remains PMR due to the dramatic relief response I had to the Pred (initially received two long-acting injections, one in my shoulder and one in my knee. Within 24-36 hours I was pain-free. Over the next 2-3 weeks as the injections wore off I began taking oral Pred. Because of my previous reaction (very very severe depression) I am trying to "get by" at the very lowest dose possible. So at 6MG I am just getting by and I realize this is a risk to ongoing inflammation and other side effects, but the Pred side effects for me are a known issue. I cannot risk the severe depression again as it is a far greater risk to me personally.
I have an appointment with rheumy on Friday. I will continue to hope and pray for a "magic wand" that will resolve this disorder for each and every one.
Peace to you.
PS - my good days / bad days seem to have no rhyme or reason. I've tried different scenarios (food, omitting food, alcohol/no alcohol) and the only consistent thing I've discovered is that the less (gently) active I am, the absolute worse I feel.
I relate to what you are saying. Don't know what feeling like me would be like. It is reassuring to know others are going through this too. Not that I am happy anyone has to go through this. I thought once prednisone therapy helped I would not experience PMR symptoms. But I do have good days and bad days. Some days I have to force myself to do anything. I do feel better when I take my walk. Slow as it may be. Sorry you had such severe reactions to the prednisone. Wishing you a good day today.
Maggi, I'm wondering if continuing steroid injections rather than oral steroids would manage your PMR without causing such severe side effects. I do know of one person who has spent the last 3 years purely on steroid injections into her btm alone. The problem is that the effect can wear off sooner in some people than others. Perhaps this is something you can raise with your rheumy on Friday? I found that daily walking within my limits was the best exercise - as Linda has said she also feels better when she takes her walks.
I do find I tolerate the injections better and discussed this option already with my rheumy. I am only allowed to have those 3X annually. The lasting effect is only a few weeks, so that is not an option. 
There are different sorts of injections - those into joints should be limited to 3x annually but there are depot injections, given into muscles, which can be used in some cases instead of oral pred. I don't know whether the side-effects are less, that will also depend on the dose level and the patient, but they can be used on a continuing basis where required.
Will check with my rheumy on Friday. Thank you :-)
Do any of you have to be careful about the activities you do so the stiffness and pain don't return even though on prednisone? I am finding if I do things using the muscle groups really afftected by PMR, I begin to to get some of the PMR symptoms although at a lesser degree. I also have never been a person to need naps, but am taking a nap/rest almost every day. Is this common with any of you? I am finding that even on Prednisone, I am having to alter my daily activities. I seen to fatigue easily and get out of breath ealsily. However, took a mile walk for the first time in months. Had only been walking half a mile a day lately, weather permitting. Oregon rain you know!!
Hi Linda82701,
I'm just over the bridge in WA State. Maybe the RAIN is our PMR problem! 
Seriously, for me (a PMR short-timer compared to others here) there is no rhyme or reason. My symptoms actually seem worse the more I am "still". I try not to overdo anything exercise wise, but I do try to walk every day (though I'm not always successful).
Hope you're soon better every day. From your neighbor to the North.
I am still on 50 mgs. per day so my side effects include extreme fatigue BUT two different docs explained that no matter what I had to walk one mile per day. So my husband got me a treadmill for bad weather days. So far,two months into GCA, I can only go for 15 min. at a time but get in at least 30 min. per day, almost a mile. Then I flop on the sofa! This is to help with osteoporosis which is a huge problem for older women on long term heavy doses. I will have a bone density test in two weeks and then every few months to check. Exercise is so important for all of us on pred for long periods.
My side effects are also worse when I stay still. When I overdo simple chores or do my walking, I perspire terribly, have to wash, and plop down to recover. So no fun but I feel more normal when I stay busy. I can finally read for more than a few minutes. Our worst enemy is becoming frail!
The pred doesn't cure the problem - it manages the symptoms by dealing with the inflammation so reduces the pain and stiffness but isn't perfect. Your muscles remain intolerant of acute exercise so you too have to take a role in management.
The underlying autoimmune disorder that causes the damage and the symptoms we call PMR is still there - and will remain there until it decides to go into remission. There is nothing we can do to speed that up - we have to manage life until it happens. The pred helps but we must do something too. Fatigue is a big part of almost all autoimmune disease - it isn't clear why but it is. Maybe it is simply our bodies telling us to rest - and by resting when you need to you will achieve far more in the day.
The worst thing to do in PMR is sustained or repetitive actions - both tire the muscles and don't allow them to recover. Such a task split into a few minutes at a time with rests for the muscles involved inbetween will allow you to achieve far more overall. Or doing something one day and then having a day rest to recover helps. A nap in the afternoon will allow you to do something later in the day that would have been impossible if you hadn't had that rest. Being "still" is bad because it allows something called myogelosis to occur - the muscles stiffen up and make it difficult to get moving again. It is a listed symptom of PMR.
So lots of short bursts are better than one long session - but not too "bursty"! Keep it all low key!
I often suggest googling "the spoon theory by Christina Miseriando" - someone has written a thread about it on here recently. And another good read for managing autoimmune disorders is Despite Lupus by Sara Gorman - especially her advice about resting and achieving more.
And I'm sorry - whoever it was said she'd been told by 2 docs she MUST walk a mile a day - I don't know what world they live in but it is certainly NOT the PMR/GCA world I have lived in for the last 10 years. With or without pred, the pain and other problems made that impossible for a very long time. For over a year I could barely walk the 300 yards from my flat to the village, even with crutches. My bone density has not changed - there are many factors involved in bone density and if you can't walk a mile you can't walk a mile. But it is wrong for a doctor to make you feel inadequate or risking your health if you can't. Realism is important.
I have been using the spoons theory since you mentioned it before. It works for me. I actually take more rests, and, of course, feel better for it. (Husband not amused - he's been telling me for years to slow down, but taking notice of 'spoons', well!)
I have docs pushing me to walk because they both know I would try to exercise in a less gentle way like try to run a marathon at 68. I feel so for those who have so much pain all over the body. On so much pred, I feel no pain, just awful side effects. Here is the catch, each time I taper the dose by 5 mgs. I run the risk of the giant cells inflaming again and going into another massive headache. During a few days after a taper,
I have to pay very close attention to any pain. I am a new patient and have only had one taper under my new rheumy. For those who have dealt with this for ten years and constantly have pain, I think about you constantly.
Try reducing in smaller steps - no reduction should EVER be more than 10% of the current dose and even that is too much for many people. Two reductions of 2.5mg 2 weeks apart achieves exactly the same result - and maybe will cause fewer ripples. At lower doses 1mg at a time is quite enough.
And no - I don't constantly have pain now. I'm on 4mg, it looks as if I will be there for a while but that's fine, I feel well. I had 5 years with no pred - uncomfortable but not hellish. Then it became really bad but was still a mystery to my GP. 15mg pred achieved a miracle in 6 hours but much later I had a major flare and severe bursitis. The fatigue went on for a long time though and the fear of getting stranded was always there. Now I can walk fairly well - but a few hours of wandering round town leaves me tired the next day.
MaggiGrace,
Hello, neighbor! I have only been diagnosed since January so am a short timer, too. Just takes time to realize the complexities of this disease and prednisone. But as time passes and with the insight of everyone on this website, I am learning and accepting what is going on with me.