Early Diagnosis vs late on outcome

Reggie, when I got PMR and after the first couple of months understood it was semi-chronic condition which wasn't cured by pred it occurred to me there was no point taking pred, weaning off it, only to return to being sick again.  To avoid that, I reasoned, I'd have to do a lot to change what I thought was already a pretty healthy life.  Diagnosis of "low bone mass" really got me worried and I upped my game when it came to diet, supplements and weight-bearing exercise.  I also have cut out nearly all highly processed carbs (read wheat) and refined sugar.  Such foods really are a special treat now, not a daily staple.  A major thing, which is very hard, is attempting to avoid stressful situations but I do my best.  I also get an alternative treatment using low intensity laser light, plus other treatments from a physiotherapist.  I reckon that even if PMR plans to linger for several years, if I can get to a vanishingly small dose and stay there that will be satisfactory.  

I guess I have been very lucky so far.  I still have a ways to go though.

Nick, I don't think PMR causes muscle loss, does it?  Pred does.  Or is it another case of where we are all different?

 

This makes sense to me too due to the loss of activity when a person is a year or more trying to get a diagnosis.  Thanks!!!

Wheather it is PMR or pred is debatable. Even without PMR, when people have sedentary lifestyle or type of lifestyle with no or irregular physical activity, is the main cause of  muscle loss.  When you get PMR, stiffness and pain prevents any activity.  I tend to believe that Pred helps people with inflammation and makes possible to move again.  This is why I would not blaim pred for muscle loss.

I agree with you, it is the PMR, that causes the muscle loss. The pain, stiffness, plus the fatigue, and the inflammation, which is PMR, leads to a couch potatoe life, which in turn leads to muscle loss. Steroids relieve all the symptoms, wouldn't it be wonderful, if they cured PMR?

Nick, I was physically able to perform most large motor skills throughout undiagnosed year.  What I couldn't do were things involving turning, reaching behind me,  etc.  While I had trouble washing my hair or doing up my bra, I could walk, after the first few excruciating steps, and I did.  I was even able to jog a little, although back issues (non-PMR) really have stopped me from doing that, I could shovel snow, I could lift and move heavy boxes of books, I could vacuum.  It is now, after months of pred, that I find it harder to do the large motor things, although my flexibility has been A1 since starting pred.  Now, if I'd been unable to walk, etc, then you might say PMR caused muscle wasting.  But only in the same way any kind of enforced immobility does.  PMR itself I do not believe directly causes muscle wasting.

I dont agree with you, if you didn't have PMR, you wouldn't have the pain and stiffness,which slows you down and leads to the couch potato life and muscle loss. PMR is an inflammatory disease, the inflamation and swelling cause the pain an stiffness, So, which came first, the pain and stiffness or the couch potatoe life and the steriods? Case proved.

In your reduction down to 6mg, have you had any flare ups at all?  I am going to go down to 7.5 in a week.  This will be from 10.  My rheumatologist insists that this will be fine since I am on methotrexate.  He actually wants me to go to 5.  I am going to try the 7.5 for a while and then go to 5.  I don't see him for two months, so that should be an okay plan.  I do think we lose strength when we do not use the muscles for sure.  I can see that my muscle tone in my arms is not what it was when I was doing counter top pushups daily.  I have been afraid to do those again.  Now I am wondering if it would be okay to start my routine again which included lifting small weights.  

I think I was trying to explain that I didn't lead a couch potato life.  There's a difference between actual muscle wasting caused by a disease, and muscle wasting caused by inactivity.  PMR may lead to inactivity, so indirectly it causes loss of muscle tone.  It has no direct effect on your muscles, any more than breaking a bone which stops you walking for a while has a direct effect on walking muscles.  It's the inactivity which does that.  Muscle wasting is not part of the disease process of PMR .  Anyway we'll have to agree to differ on this.

I did not have any flare ups yet.  I am very careful when tapering and at this level I am reducing 0.5mg using DSNS method.  I am only taking pred, s can't comment on your plan for reduction from 10 to 7.5. Maybe someone else will come along and do that for you.  For me, because it really took only weeks to diagnose PMR, my "down time" was about 6 weeks. I was pretty active before PMR, so I slowly restarted exercise.  My weight did not change, so my guess is that my muscle loss was minnimal, if any.

As far as pushups ( or any other streangth exercise), start very slow and see how your body reacts to it. Don't try to set any records, if you know what I mean.

I guess what I was comparing was the difference between weight bearing (anaerobic exercise) vs aerobic exercise.  I continued walking also, perhaps not as far as I was in the beginning, but I stopped doing my weight bearing exercises due to the pain.  I am wanting to go back to those, but don't want to get achy muscles again.  I am not sure if I start doing the coutner top pushups, squats, and weight lifting again if that will cause problems or not.  I haven't seen that addressed here.

Thank you so much.  I think I will start doing some of my old routine, but very slowly.  I am glad that you have not had any flares.  I asked my rheumatologist to give me a prescription for 1 mg tabs that I could split to go down very slowly.  He insists that the methotrexate will allow me to go down faster.  He gave me 5 mg tabs, so I am planing to take 5 with breakfast and 2.5 with dinner.  I have used the split dose for quite a while and it is working really well.  My weight has stayed the same too.  I am on the thin side and was worried about weight gain.  So far the only weight gain has been tempory when I have chosen to be a little piggie out to dinner.  LOL    Thanks, Donna

Donna, I carried on with all my exercises but at a certain point, just before I got diagnosed by a new doctor, I began to find it too painful to bend my knees to my chest, which was one of the physio exercises I've done for years for my back.  I've never done any "weight bearing" exercises as such, except push ups, but I do remember when I was trying to get better from my stiff shoulders, pre-diagnosis, being given exercises with stretchy bands and they ended up triggering incredible pain.  The physiotherapist I had at the time gave up on me, recommended massage and a naturopath!  You should know that in my work I had done a lot of lifting, carrying and stretching, as I worked in a library - books, you know!  I can remember the day I had to call a co-worker over to take books from me, because I was in so much pain.  This must have been very near the beginning of the PMR journey.

After I started on pred I was so worried about osteoporosis I started walking seriously, this was before my DXA scan, plus I mowed lawns, and did lots of physical things, thinking I was cured, and there was certainly no period of having to regain strength after becoming painfree.  I just started with no trouble doing everything I'd always done, and more than I had for a couple of years because even non-PMR pains vanished for a couple of months!

I am retired, so fortunately did not have the issue of having to go to work.  I sure do know the weight of books, I am a retired teacher.  I have always walked a lot, but had started a couple of years ago doing a lot of weight bearing exercises.  I am going to try to get into those slowly, but sure don't want to go backwards.  I too did exercises on the floor for my back.  I have pretty severe scoliosis.  The first time I got down on the floor while in pain from PMR, I thought I would die and I realized that I could not use my arms to get back up.  I scooted somehow and got to my elbows and kind of raised up somehow.  I have not been back on the floor since then.  I am sure that I could now as I have no pain.  I have those stretchy bands too.  Hoping that you are done with PMR soon.  

I retired when I was halfway through the undiagnosed year.  I had a pretty bad time after that until I was diagnosed as retirement merely added to my depression.  I do remember being able to exercise, but having an incredibly hard time getting up off the floor afterwards!  Getting in and out of the bathtub was an adventure in itself.  And all this time I thought it was OA and I couldn't understand why the pain was in my muscles and not my joints!  The doctor I had at the time was useless and in retrospect I think she saw me as a hypochondriac old woman.  I retired at 67; it will be two years ago November.

I now go to a fabulous physiotherapist who has been helping my (mild) scoliosis among other things.

From the onset, I was sure that the pain was muscular.  Maybe that helped the doctor with the diagnosis.  I just kept saying that I felt like I had done a gazillion squats and a gazillion pushups.  My my shoulder and upper arm muscles just ached as did my thighs.  It never felt like it was in the bones.  I had X-rays and all was fine with the bones, some minor arhtritis, but nothing to really cause pain.  I am hoping that it just stays at that.  I keep reading about so many people with multiple illnesses and feel really bad for all who are suffering more than PMR.  Had I been forced to retire due to something like this, that would be horrible.  I retired when I was 66, but was ready to retire and travel.  I have done lots of traveling, so that is wonderful. 

I told my doctor where the pain was, although one of the last times I saw her I said "everywhere" and she said I would have to be more specific - I'd been in a couple of times before with the shoulder, neck pain, and x-rays, like yours, only showed relatively mild OA I was already aware of, which had not worsened over the years.  I agree it is good to "only" have PMR and OA!  I had googled my symptoms, and PMR came up, and I dismissed it as a possibility as I couldn't believe I could have anything which would need such a serious medication.  I'd never heard of it before, and never even thought of mentioning it to the doctor.  Could have saved myself months of grief.  Or perhaps not.  She might not have been as good a guide on this journey as my current GP is.  Sometimes things happen for a reason.

 

I felt the same way in the beginning, but I did mention my Google search to my primary and he then said, "I think you should see a rheumatologist.  I then had lots and lots of vials of blood drawn and the diagnoisis was PMR a couple of weeks later.  I am really glad that I got to begin treatment early on. Not sure what the path is now, hoping to be pain free, but from what I read on here, I am guessing that won't be the case.  My next redcution should tell me.  That will happen in 8 days.  Hope it goes well.  

The doctor I had at the time was a young woman who had taken over from our doctor when he retired.  She really wasn't very good, certainly not with me.  When she left for another practice we were given the option of following her, but I thought "good riddance".  Which left me without a GP for a while.  I probably still would not have a primary care physician except for my meltdown at the duty doctor's counter, where I was told they were definitely not taking new patients and I couldn't even see the duty doctor because I wasn't one of the patients in that practice.  Never mind that I'd been going there since about 1972 and all my medical records were there....  I guess the receptionist there was an empathetic person, because she got me in with a really good doctor, who saw me less than half an hour later.  It was really important that this happened because as we know PMR can't be effectively treated by random doctors in a drop-in clinic, where many of us now have to go, and it's not appropriate for the emergency department.

Sure glad that you were able to get in to a doctor that you like and have had appropriate treatment.  No, I would not want to go to a clinic either.  I did thee week before I was diagnosed.  On a Saturday, my pain was so bad that I went to one of the clinics here in town.  The on-call PA gave me a prescription for 800 mg Ibuporfen tabs.  Of course, that did nothng.  The next week my primary suggested the rheumatologist.  Hope you are feeling well as we begin a new week.

Yes, I feel very well.  But my hubby and I a few minutes ago were crawling around on the floor trying to fix the central vac which is in an awkward corner, and when I stood up I realized that, although I have no pain, I still had to grasp a piece of furniture to pull myself up, and seemed to be moving incredibly slowly.  Those days of being able to spring up and impress people that I was still so nimble at my age are now gone forever I guess.  Sigh.

Keep well!

Yep, me too.  :-)  I need to get down on the floor in a bit as I broke a glass and I need to make sure that all of the pieces are vacuumed up.  I need to move a chair to be sure.  I think it will be just fine.  My poor vision causes me more problems doing stuff like that than the PMR!!!  You be well too!!