I was diagnosed with PMR back in December. The entire story is long and drawn out; however, suffice it to say that it is a far better result than initially expected.
I have an appointment with a Rheumatologist later this month.
Starting December 17th, my GP put me on prednisone to get me through the holidays. I was on 30mg for 5 days, stepped down to 20 for five, then 10 for five and now one every other day.
I have to be honest, I have a high pain tolerance due to other medical issues I have had to deal with in the past. Two hip replacements, avascular necrosis in both knees and shoulders among other things.
The prednisone has allowed me to resume a more normal schedule and get back in to normal activities. The problem I have is knowing the difference between pain from PMR and "normal" muscle soreness from increased exercise.
My strength has returned, and I have resumed hiking and so forth. Still short hikes due to being out of shape. I went bowling last night for the first time in over a year. My legs are sore, feel like muscle soreness, but honestly that was where much of this started to begin with.
I am trying to get me prednisone intake down as low as possible so don't want to increase just because. When I was reaching the end of 30, 20 and 10mg I started to get anxious and fidgety, which is highly unlike me so reduction was a welcome relief at each stage.
I am interested in what other people’s experience has been around soreness and differentiating between just plain old muscle soreness and PMR pain.
Thanks,
Tony
PMR is distinguished by peaking in intensity at night, largely resolving during the mid-day in most cases.
PMR is usually symmetrical about the body, i.e. both hips, both shoulders.
PMR symptoms tend to be most active in the hip and shoulder regions, but can affect knees, wrists, feet and thumbs for example.
PMR symptoms often occur in response to NO increase in physical activity.
PMR symptoms respond to corticosteroid treatment.
Blood tests can further indicate pmr, with elevated sed rate, etc.
Hello Tony, you were diagnosed with PMR 3 weeks ago and yet within those 3 weeks you have had 4 reductions!?
this treatment regimen is most irregular and far from gold star treatment of this condition.
it is customary to be on 15mgs for 6 weeks, 12.5 for 6 weeks then 10mgs for anything up to 6 months.
pmr is due to the auto immune condition we have causing inflamation in the joints and we take the steroids to help reduce the inflamation and in turn the pain that it causes. We can endure this condition for 2years if we're lucky, but more often we take the preds until the autoimmune condition burns itself out and that can take years and in some unfortunate patients it never burns out and therefore they will be on the preds at some dose for a long, long time.
if your GP has recommended this reduction program then I have to say that it is most unusual and contrary to the established treatment plan for this condition.
the doses you have been on have not been given enough time to get any inflamation under control so I do wonder?
Most of us who had to endure this condition for months prior to correct diagnosis will tell you that the pain of pmr is not like any pain they had to endure, therefore can easily tell the difference between pmr pain and other pain, although I do concede that it can be difficult to differentiate.
did you have a blood test that helped your dr diagnose pmr? I admit that this test is not always 100% but nevertheless it helps dr's with their diagnosis.
do let us know w more. Regards, tina
It's a bit of a 'how long is a piece of string' question. Not only as individuals each have their own version of PMR, so do individuals have their own reaction both to the steroids and the condition.
Generally speaking, PMR pain is usually bilateral, so if one side only is sore then it might be due to overdoing it but not necessarily. I have always had a weakness on the left side, and it is that side which always hurts more anyway.
With the best will in the world I could not hope to carry out any of your activities - a walk to my local shops is a hike for me! However, I can still overdo it on occasion and mostly I know that I am overdoing it anyway, so expect payback.
Not sure why you are so anxious to be steroid-free so quickly? I think I'm going into my 14th year with it but have lost the plot, it might be 15.
so my GP put me on prednisone dosage I outlined to get my by until my rheumatologist visit later this month. it was more of a stop gap.
This all started with what they thought to be Cervial Spinal Stenosis. I ended up with a doctor in NY who specializes in Cervical spine who was able to recognize it was not stenosis, but rather PMR.
That all being said, my issue is that my symptoms, at least best I can tell started right after a total hip replacement. The pain and reduction of strength began ~2 to 2.5 years ago but hard to pin down.
I expect the longer term treatment to be far more than a few weeks, based on what I have read so far.
hope that makes some sense. I am not new to pain, but more to differentiating betwen being out of shape and related to a condition. Joint pain such as I have from AVN in knees and shoulders I know that but where muscles are concerned less much so.
Thanks Dan. my sed rate was high back in Mid December, I don't remember the number right now and don't have it handy, but was several times what my Dr. said was normal. seems like 3-4 was normal and I was like 20+, but I could be wrong on the numbers. I know it was considerably higher than what he said was normal.
within hours of taking the prednisone I was seeing relief. I went from pain walking at all and not being able to sleep to being able to walk normally and get a full nights sleep.
thanks for the information.
Thanks, that was what I suspected.
Being able to spend time hiking and in the outdoors is crucial. It has been the greatest loss over the last couple years. I was hilking 20+ miles per week before this started. longest I have had in the last 9 months is 2 miles and that was Jan 1. pitiful hike for me, I didn't even carry my day pack which is in excess of 30 lbs.
As far as being steroid free, it is not os much being free, but not wanting to take more than I need to. The anxiety is not a welcome side effect, plus I eat like a horse not on steroids, don't need anything encouraging that 
.
I would be most interested to know how many of us PMR victims succumbed to the disease after some sort of trauma, whether physical or emotional. I think I had rumours of PMR about eight years ago, but did not know what it was, and it went away. I did not become virtually disabled until not long after recovering from a broken leg. Often this is the story people tell. They succumbed to PMR after an illness or injury or a particularly horrendous psychological upheaval.
Peter if you are taking 1mg of pred every other day after three weeks and are feeling better and can go bowling, one does wonder if you have PMR, although I may be talking rubbish. As the others say, to get down to that level of steroids for PMR can take around two years and for many a lot longer. Even carrying shopping can be a problem to a lot of us. On the other hand 30mg is a very high dose for PMR so you may have had something else that also responds to a higher level of pred. Most people start at 15mg which tends to work like a miracle which gives a good diagnosis of PMR.
Once the majority of the pmr patient's symptoms are being controlled by pmr, it can be difficult to distinguish muscle soreness caused by exercise from muscle soreness caused by pmr's primary symptom, that being vasculitis.
I believe that you can have soreness caused to varying degree by both pmr and by over-exertion beyond one's comfort level.
In fact, pmr reduces the threshold of whatever level of exercise one can perform without resulting symptoms of over-exertion.
So you are managing two causes of muscle soreness, each with it's own remedy.
I recommend being creative in devising an exercise routine that includes a gentle warm-up, followed by resistance exercises within each joint's tolerable range of force level and range of motion.
It can make for very boring exercise, but it is very good for maintaining circulation, strength and range of motion.
A record of one's progress with each exercise is quite useful for staying within limits of discomfort the next day.
The warm-up period is needed to allow comfortable range of motion during exercise.
I meant to say "...the pmr patient's symptoms are being controlled by corticosteroids" in the first sentence of my above posting.
That is 10mg every other day. I just reed my post above, it was misleading. Sorry. I was told to ween down until it stopped helping then increase and find a happy place. The truth is I have had leg pain for most of the last 22 years and the last 3-4 have been increasingly worse. I finally got to where even walking through the house was not an option.
Ah that makes more sense, although still quite a drastic reduction in a short time. Whose idea was it to take the 10mg every other day? It is unusual for PMR although it could work for some people. It is more normal to take a daily dose. eg 5mg a day.
I find muscle soreness after exercise totally different from the pain I get from PMR. Perhaps I am unusual.
That was another question I had, which was better take 5 every day or 10 every other. I don't mind splitting pills, but just lazy in general
My pains are not muscle at all.
My pain is in the tendons and bursa of my hip flexors, groin, hamstring or butt bursa, shoulder blade bursa, big toe tendon. The tendons are tender when I press on them. And of course if I use them. I read the initial inflammation could have damaged those areas, or it is the blood vessels being constricted by inflammation that causes the pain, either way, not a sore muscle type pain for me.
I used to be a trialthete so I know muscle pain due to soreness, we used to say hurts so good.
Now the pains make me exhausted when I use those areas, and painful to sit on for very long, or lie on, such as shoulders, hip, ...
oh, and hip bursa in right hip, which is probably Trocanteric bursitis, either due to PMR or old injury come back.
Oh, and lower back, middle back, upper back localized joint on spine pain, has subsided with Bowen work.
Year later I'm on 6 mg Prednisone, mornings still in 50-70% pain, depending on activity day before.
I've had pain in much the same areas and I also know from being very athletic and knowing my body, that my pain is different from muscle pain you normally feel after strenuous exercise. I really suspected mine was myofascial pain syndrome, & luckily I was referred to a massage therapist who specializes in treating it. I had tried 6 Bowen treatments & unfortunately, it didn't work for me. I was in such misery last summer that I went for treatments once a week for a month & a half, then every two weeks, then 3, then a month, & now I'm trying a month & a half this time. There was no massage involved--it was finding the trigger points (not tough to do, since they all were extremely painful to touch), & working on those. I was his first patient with PMR, so he's been fascinated with seeing how my body reacts, & has been doing research on PMR since I came in. He's learning along with me, so hopefully he can help other PMR patients in the future too. It's taken time, but I feel amazingly good now. I had even lost flexibility in my hip/groin after my first fusion surgery in 2007, and he has worked on that enough that I've regained my former range of motion there too. I would have never thought it possible! I guess we each have to keep trying until we find the thing that gives us some pain relief. I just tapered to 5.5 from 6 on Dec. 28. Feeling a little extra overall muscle soreness & extra fatigue, but hoping it will even out. I did the same thing going from 6.5 to 6, and had to stay on that 6 wks before I felt ready to try another taper. so glad I didn't try it over Christmas!
I was at my GPS today and he told me of a male pmr patient who started prednisone 6mos prior to me and is now at 7mg. I started the end of September 20mg now 17.5mg.
From what I keep hearing from you males is that you seem to taper very fast. For me it was hell for 3-4 weeks of my 7 weeks of tapering so not looking forward to each reduction. I will be slower than slow.
I'm envious but don't be so quick it can come back to bite you and if it does it could be worse.
I agree with someone else's comment pmr pain is like no other.
Best of luck.
Oddly, the year I was undiagnosed with pmr I used to describe the pain as being like the pain of sore muscles the day after over-exercising, only unlike that pain it never went away.
Apparently steroid side effects are reduced if you take them every other day, rather than daily, but that does not usually work for people with PMR.