Does anyone doubt they have the right diagnosis of PMR

Julian, I haven't really questioned prednisone, just the fact that after all these years a safer version for chronic users hasn't been developed.  But I questioned the bone drugs "they" were trying to push on me, even before a DXA scan, and finding alternatives to that has led to a huge number of questions, and answers which seem to shift daily.

Your desctription in bed was identical to mine.  I got to where I hated to go to bed knowing this would be happening.  You are so right, just pulling the covers up and turning over and I would literally cry out in pain.  I never experienced much stiffness, it was always out and out pain.  In the morning my wrists would hurt so bad that it would take both hands to puck up my coffee mug.  After breakfast and the prednisone, a few hours lter there would be relief. Prior to the diagnosis thought, I didn't think it was much worth living.  I am grateful that my diagnosis came earlty.  I am just hoping that if I have flares as I reduce that it will be stiffness and not that horrible pain.  Good luck.  OH, I agree that at least we have a med that works and we have some hope.   Donna

I do not have another diagnosis in mind, mostly just wondering if it was another form of arthritis that maybe did not need long term steroid use

Mazijay, we are all different, and our bodies are all starting from different places in terms of lifestyle, general health, various types of stress and so forth.  I also feel that I wasn't as badly off as some even before diagnosis (although some of the descriptions make me aware that a few more weeks of not being treated and I would have been).  And I have had an excellent response to pred.  Right now I'm in the process of finding my lowest possible dose and I think I may have reached it.  The next couple of weeks should tell me if I'm right.  And I agree that continuing to move, in whatever way is best for the individual, is really important.

Donna- I too began to dread going to bed, knowing that I would wake up, stiff from lying in one position and needing to roll over, and I'd lie there thinking that (a) lying in the same position got really painful so I needed to move and (b) that was going to hurt SO MUCH!!  Eventually, I'd roll over but never did so without lots of noise- something  like AIEEE AIEEE EEEE! (I about choked when I read a discription of PMR pain as "aching,"  which seemed a mild term for what I was going through.)

When driving, I'd plan a route not based on distance but to minimize the number of turns and the accompanying gasping-level pain from lifting my arms to turn the steering wheel.

It took 25 mg of prednisone to overcome the pain at first.  I have always taken enough to be essentially painfree (to avoid not only the discomfort but the chronic vascular inflammation which is associated with many other problems.)  After 18 months I am down to 5 mg (as of today! hurrah!), so far, so good.  

Luckily I have not had any serious side effects of prednisone.  I did not gain weight (which would have depressed me terribly)- my fat just moved around to newly chubby cheeks and a lump at the base of my neck. (I'd love to know the mechanism for this, since I thought fat deposition sites were genetically determined.)  

So I have had a relatively easy course of PMR, with only the fatigue for many months and milder pain (OK, that pain could be described as "aching!" mostly during reductions.  Since the crippling fatigue is gone and with prednicosne controlling my symptoms, my life is pretty much normal.  

So there is hope for those newly diagnosed like K.  Even if you have PMR, it may be shorter than average (somebody has to be "shorter than average!" and the prednisone may allow you to function well without any devastating side effects.  

 

Those smiley faces were supposed to be close quotes!  I must have triggered a shortcut to emojis!

You are giving me hope.  I was first put on 10 mg which did almost nothing.  I was in absolute agony.  You mentioned driving, there was one day that I had an appointment and I was actually afraid to drive.  I was hurting so bad that I was afraid that in an emergency I would not be able to react in time.  I called a friend and she drove me.  Getting out of bed and putting my robe on was agony.  I have a little dog and I need to get downstairs to take her out first thing in the morning.  I managed to do that, but it was horrific.  When the doctor put my dose up to 20 mg, I was able to function most of the time, but at about 4:00 a.m. the pain would start again, mostly in my writsts at that time.  With the wrists, it meant that moving the covers really hurt.  One day, two weeks ago in desperation, I decided that I was going to see what it would be like to split the dose.  I had already taken the 20 mg in the morning.  I debated with myself on how I was going to do it.  I finally decided that I would go ahead and take another 10 mg that evenign with dinner.  I woke up pain free.  I then went to 10 mg at breakfast and 10 mg at dinner.  I only had the one day at 30 mg.  I figured I was in so much pain that I had to gamble on taking the extra.  I am so glad that I did.  I have been pain free since then.  So, I do have a question for you.  I have not yet begun reducing.  I have been on the prednisone since May 2nd, so a bit over 2 mohths.  I too have had no side effects.  I have had no weight gain, just a bit sleepy sometimes in the afternoon, but that is mostly if I have not been busy.  I see you are now down to 5 mg.  I really look forward to that.  At what rate did you taper????  I will be seeing my rheumatologist the 8th of August and I think he hopes that I will be down to 15 mg by then.  I am not so sure that I can be.  You sound so similar to my case, so would like to know how you have done this.  Thanks, Donna

'Slippery' or 'Easy' sheets solved that problem for me.

Donna- The important thing about reduction is how well it works for you. We are all different and your PMR may be with you for a short visit or hang around for years.  As Eileen says, the dose should be enough to control your symptoms, for as long as the PMR is there.  Having a goal for reaching a certain dose of prednisone makes no sense! 

 

I did not follow a systematic reduction but go by my symptoms.  I'd stay on a dose for a couple of weeks, then try a minor reduction.  Often there would be mild pain a first- if it got better, I'd stay at that dose; if it got worse I'd go back to the previous dose.  As I got to lower doses, I proceeded more slowly.

This allows me to probe the lowest dose that will control the symptoms but to back off immediately if the pain (and therefore the inflammation) returns. Another sign for me is that my upper arms (where severe localized pain occurred before prenisone) get really cold.  I knitted special scarves to wrap around this area before recognizing this as a sign I needed more prednisone.

I have found that traveling across time zones often caused a return of pain ( in my shoulders and neck), so I'd increase the dose.(I've had 5 such trips since diagnosis.)  I also had to increase the dose during recovery from surgery and a few other medical problems. So, unlike the recommended slow and steady reduction, I have yoyo-ed around, but always with a reason, raising the dose in response to a stress.

That is my experience, but yours will be different.  You can't bully PMR into leaving by a quick reduction in prednisone- sorry, but PMR is in charge and all we can do is cope with the symptoms as long as it is around.

Thank you so very much.  This really makes sense.  I have got to get in touch with my rheumatologist and get a prescription with 1 and or 2 mg tabs.  I can try dropping by five now by splitting a 10 mg tab, but really want to try by one of two first.  I called Monday and he did not call back.  I know that mine may be different than yours, but our symptoms are so much the same. I live in a hot climate.  With summer now, the temps are around 100.  I have AC, but at night have always just opened a window slightly and turned the ceiling fan on.  I found that iwth the fan on, my shoulders would really be painful in the morning, so I have resorted to keeping the AC on overnight.  That is somehting I do not like to do as it is pretty pricey.  I am cooling much more space than is necessary during the night.  I like that you knitted the arm pieces.  I might try somehting like that and see if I can go back to the fan.  So, I will simply let the pain be my guide.  I can handle a day or two of moderate pain, but sure don't want to go back to that debilitaing pain.  I saw that it was mentioned slippery sheets, that would not do it as this was winter and there was a blanket that needed to be pulled up and adjusted, it was the pulling up of those things that was horrible.  I am sure you remember that too.  Have a blessed day and thank you so much.  Your response makes so much sense to me.  Donna

That happens to me a lot.  I'm gradually remembering not to use creative punctuation. 

My doctor said same.  I was sooo grateful to her.  Right now my most annoying side effect is that my naturally curly hair has gone all poodle-like and I hate it.  So much better than creaking around painfully and feeling that life isn't worth living.

My once thin limp hair is now sporting the smallest of curls. :-)

You can have some of mine.  Oh, wait, you are a mere baby. You won't want my white head!

Trust me, I'm probably as white as you are!