Lab results...

Well you know low numbers don't mean it's not PMR.  My lab results initially were low and didn't confirm PMR but clinically I had pain in hips, shoulders, neck, low back.... stiffness and pain in the morning and if I sat for an hour or so without moving.... But once the pain was under control the fatigue was and still is the biggest challenge for me.  I really can't stand not being able to move and walk the way I used to.... but I know things could be worse...

He may think labs are usually pretty accurate - patient experience suggests otherwise, but that's nothing new! If he is able to rule out other things and if he has not found another answer I hope he will revisit his opinion. I and a couple of medics heavily involved in research think that PMR should be renamed as "steroid-responsive polymyalgic syndrome". PMR is just the description of the symptoms - many painful muscles -  and if a low dose of pred provides a better quality of life then that should not be ruled out.

I don't understand why you quit taking the levothyroxine - and it COULD account for some of the problems. 

Eileen,

I guess I quit taking my Levothyroxine because when I was on it I tore the rotator cuff (at that time I didn't know it was torn) and thought it was also starting to make other muscles hurt. My PCP prescribed it for me and I wasn't sure she should be the one prescribing. Because my HGBA1c is also been bordrline I"m going to make an appointment with an Endocrinologist. I still say it seems strange all of this started with the hypothyroid issue.

Bert I had my thyroid removed in 2006.  I was on and still on Synthroid.  However the physician I was seeing did NOT listen when I told him how weak I was feeling... could barely lift my arms or get moving. Soooooooooooo I left him and went to an Endocrinologist.  God bless him.... now on 0.15 mg.  Long story short , I gradual went up to that ... but I was still having days of complete exhaustion... told the endo and he could not figure it out... of course the labs were "within normal ranges"  ... love that response.  He referred me to Rheum.  He did not believe it was PMR again labs were not confirming the Dx.  Sent back to my Primary who agreed to continue giving me the Pred. and so here I am 9 months later and trying to live my life as it is.....  I'm on 6mg.  Some days I still have some aches( kind of like running underground) waiting to attact ... in my shoulders, neck BUT as I've said so many times here and to my physician .... the weakness/ fatigue is the biggest challenge..  It saps your spirit...

Probably not a good idea to go "cold turkey" with your meds.  I'm not a physician.  Be careful..

I have been taking 4 1/2 mgs for almost 12 months, unsuccessfully trying to reduce to 4 many times. However lately I've sensed something has improved so I'm very cautiously using Eileens slow method to reduce by 0.5 mg. So far it's been very good. 

Fatigue is also my worst symptom and after 2 1/2 years, I almost can't remember what it felt like to not be tired all day.  The only thing I have found that helps is to get some kind of "easy" exercise such as walking, gardening, light house cleaning.....and I'm just getting ready to try short bike rides.  

I see above you tried reducing by 1 mg but at our low doses that is a pretty large amount - 25%.   But perhaps you are on coated Pred and can't cut them in half.

Hey Judygirl,

  I guess I'll stick at 6mg for awhile.  I really have to hold myself back to not reduce !!! 

Thanks for your thoughts.  I'll try to be patient.... 

Hard for people to believe you're feeling like your arms and legs don't want to move cause they can't really SEE anything. 

All the best !

I found pre pred that involuntary screaming gets their attention!

I really started laughing when I saw your post. I tried pred 2 1/2 yrs ago when the dr diagnosed me. I started at 10mg and the dr weened me off as fast as he could (Im diabetic and my sugars soared!!!) so now I live with no pred, no cortisone, just pain!. The involuntary screaming happens so often and so out of the blue I hate going out any where. Somehow I thought i was the only one with involuntary screams...nobody I know knows anything about PMR (LOL???) not really, but thank you for the laugh. Feel good.

I like the "involuntary screaming"!😄😄   Would be interesting in the local supermarket.  How about us trying it in our doctor's and rheumies practices?

No, no - in my 5 years with PMR and no pred there were many sharp intakes of breath and not very muffled shrieks as I had to move. Getting out of a car after move than a 10 minute drive was excruciating - especially if there wasn't a parking space at the end of a row so I could open the door to get out easily (all things are relative!).

"the dr weened me off as fast as he could" - but you CAN'T dictate the reduction process. I realise the BS problems but there are other ways of managing that too to make it less of a problem.

I "forgot" in a Tesco Lotus in Thailand. First stop after Myanmar. We were running short of some essentials. They'd deliberately put them on the top shelf and Ali is shorter than I ...... collective reaction was a bit like the selective deafness us meagre males succumb to in the presence of new born screaming babies.

4 months of pain was too long without pred. I struggle with the idea of 2 1/2 years.

Some variety of stubborn pride kept me trying to put my own t-shirt on each morning. A different contortionist act every day, with varying results, and screams. "Don't worry, just putting my t-shirt on" sounded a bit weak .....

Buttons on shirts were a decided improvement!

If I didn't get dressed in the first 5 minutes after getting out of bed I'd had it. I couldn't bend enough to reach my feet - one invents all sorts of ways to get a pair of knickers over one's feet and pull them up. And men at least don't have to get a bra on...

Eileen,

You say getting out of a car after a 10 minute ride was excruiating. Do you mean hips, thighs, back of knees?Sometimes my knees feel like their popping out the other side, and I hobble or I guess you could say lurch!

At times, at first, it was a damed struggle getting INTO the car, let alone out of it!  Things do improve though.  Good lick!

Everything hurt just trying to straighten up and stand! It felt a bit like pulling the two bits of velcro (the hook and loop fastener stuff) apart. Above all my feet hurt - as if I had to walk on sharp pebbles. It took several minutes to be able to move freely. And to get out of the car you have to remove your seat belt, swing your legs round and then stand up - involves every bit of you.

Absolutely Constance - so I always had the seat right the way back to get in and get hold of and fasten the seat belt and slid it right back before trying to get out. The language used if OH had driven the car last and hadn't moved the seat back was most unladylike! 

Eileen I say he weened me off as soon as possible, but I guess he knew what the high sugars were doing to me, and wanted me off asap. It took 7 months which I see now is such a short time.since then I had 1 cortisone shot (very small dose) in my left arm which was alot worse then my right one at the time. Sugar skyrocketed again. Both drs (rhumatol & GP) wont give me prednisone or cortisone again. My neuro (she is great has taken such an interest in me, she is also the one that diagnosed me) said no more pred or cort either. She knows Im in excruciating pain alot of the time but were tryin g to figure things out. I was only 52 at time of diagnosis what are the ages of dx for most on this panel?

Hello sue, I was 52 also when I was diagnosed with PMR. I literally woke up one morning with the most excruciating pain in my neck that simply never went and gradually got worse and spread to my shoulders, shoulder blades, tops if arms, hips, groin, behind knees, ribs, thumbs. I may have missed out a few places! I however, do not have diabetes type 1, but there are a couple of members on this forum who do and were definately treated with preds. Yes their blood sugar was always a problem and throughout their time on preds it was a very difficult juggling act to get the sugars right but they managed it. So I read with surprise that your consultants have given up so easily. Hopefully they will offer some suggestions soon that will enable you to go back to your dr's and devise a much more satisfactory treatment plan than nothing.

all the best, christina 

I was 51 when it started creeping up and I had over 5 years before I got to try pred at all, after a major flare that left me almost unable to walk - and it was like a minor miracle. I've been on pred at some level or other for well over 10 years now.

The drs in the US dont take a whole lot of time with their patients. I have been to many drs and one rhumatologist said" I cant do any more for you...come back and see me in 3 months" Thats when I thought my endo who treated my diabetes could help a little more. He didnt seem to know the pain I was in and seemed only to care about my sugars (averaging in the 400s) trying constantly to get my sugar under control (have been hospitalized 3 times so they can stabalize my sugar) works for 2-3 weeks and back again. I am so insulin resistant its crazy.Took it to my neuro and we've been trying to figure things to help me. I feel like im stuck in this world of pain and nobody seems to care...

Eileen, I just want to be out of pain. I want to go on the pred in as low a dose as possible and say to heck with the diabetes, but my neuro wont let me do that. i just need to be out of this pain, my diabetic nerve pain, & I have to take botox shots in my neck, down my back and across my shoulders every 3 months because of disks pressing against my spinal cord thats pushed up against my spinal column. Im so used to pain, but Im getting tired. Thx for listening.

nothing much I can think of that's worse than never ending nerve pain.

Probably not much help but here goes.

Pre workable PMR diagnosis a doctor in Malaysia suggested "frozen shoulder" and gave me some non-steroidal anti-inflammatories. They didn't really do much for the couple of weeks I had them but just enough to make the difference between "surviving" and preparing truck for shipping. The swelling in my right hand was noticeably reduced, but nowhere near as much or as quickly as when I was given pred a short time later.

I haven't a clue what your posture is like, and I'm sure you've tried this sort of stuff but again, paying attention to it didn't get rid of my need for a back op, but it certainly helped my recovery. Hurt lots when I laughed at rehab nurse when she said "we're now going to do one sit up". And when the PMR first hit I suspect it was mixed up with squashed nerves (a definite event and a different sort of pain). Even silly (to me) sounding things like sleeping on my side with pillow between my legs that helped spine be just a little straighter. Pillow height absolutely critical, we have a collection.

The problem is - rheumy really COULDN'T do any more for you!  He's read the books, listened to colleagues and, as far as he is concerned, his advice is 'sound'!  

Keep posting.  WE care!

I certainly can tell that you all care ,we all do ...for each and everyone of us. There's a bond for people with PMR just the same as for diabetics, ms, parkinsons etc. Only we know what its like to have our disease nobody else knows the pain we're in and the drs dont have a clue.This is the reason I joined this forum, because I knew friends like you understand and care...Thank you for that, thank you ALL for that!