Being tested for PMR

Bones, joints and muscles
1

i'm new to this group, so I hope I'm doing this right.

I'm a 60 year old woman who up until now was exercising 6 days a week. This exercise included using free weights and aoerbics. I saw my GP and she started me on levothyroxine for borderline hypothyroidism . I was on it for a month before I quit cold Turkey. I immediately lost 5 pounds and also was diagnosed with a full width rotator cuff tear! After the tear My other shoulder started to hurt and for some time now I've had tight hip flexor pain,front of thighs/ and pain behind my knees,this is all been exacerbated since the rotator cuff tear, I was having trouble getting up from a sitting position, and rolling over in bed was killing me! I saw a Rheumatologist , he is testing me for all arthritic conditions and autoimmune disorders. I had some leftover prednisone from a couple months ago that I took for the past couple days and it actually has helped somewhat. I'm very anxious and depressed over this situation, please help,

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What dosage was the prednisone?  Have you had any blood test?

 

3

Dosage was about 12.5, hate to say it but I quartered a 50 mg gram tablet I still had from a severe reaction to Flagyl. 

I had esr, crp,Ana,ssa, etc.. With feet and hand X-rays last week. Rheumatologist said the hands and feet are where RA usually shows first.

4

If the pred has helped do tell the rheumatologist - although without knowing the dose it's difficult to make a comment. What you describe is very typical of PMR. There is no test for confirming PMR although about 80% have a raised ESR (sed rate) and CRP, both indicators of inflammation. However - that leaves 20% who don't so don't let the rheumy try to tell you it can't be PMR because they aren't raised. It should be a clinical diagnosis, made by ruling out everything else that is nastier and to some extent confirmed by the response to a moderate dose of pred.

The majority of people I know who have PMR were very active before it hit and one day you will get back to being active again. If you are sensible and careful that is.

PMR is a pain in the butt - and a few other places - but it can be managed well if not perfectly with moderate doses of pred, starting at 15mg or so and then reducing to find the lowest dose that manages things reasonably well. The fatigue and inability to exercise last longer - the pred doesn't affect that at all - but it is possible to build up what you can do. It will be less probably and it will have to be slow - rest periods taken, possibly a day between sessions. Your muscles have been made intolerant of acute exercise and not only don't signal to you you have had enough and should stop for now, but also will take longer than you are used to to recover. Don't try to force it - it isn't worth it, you'll feel rubbish for days!

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Follow this link to find out a lot of things about PMR and other places to get information. Then ask any specific questions you may have.

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Hands and feet can be involved in PMR too - research last year confirmed that. My feet and hands were excruciatingly painful but it isn't RA.

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PMR symptoms are 'cured' by taking around 15 mg for a week or two and then reduce by no more than 10%.  The body normaly produces around 5 - 8 mg of cortasol. Gererally we start to reduce - very slowly!! - until we get to a maintainance dose where the symptoms are contained - this is the tricky bit!  Until the PMR's underlining 'problem' with the autoimune system goes into remission, this can be as short as 1 years or for life at a very low dose.

7

Except for and occasional pain in my thumb, my hands and feet haven't bothered me. I was feeling achy and fatigued in addition to these other symptoms. The prednisone also helped that. I just find it weird that I find out I have a full width rotator cuff and within a few days my other shoulder hurts and I have  pain/ stiffness behind my knees/ hips/thighs that is worse than ever before. I am so anxious about this, I've pretty much forgotten my orthopedist wants to go in scope my shoulder!

 

8

Is the rotator cuff injury confirmed or is it just based on symptoms? It isn't uncommon for PMR to be confused with rotator cuff injuries.

There is no point being anxious - the one thing I can promise is that PMR doesn't kill you and it will go into remission sooner or later. I know it is a big lifestyle change - it was for me too but I continued at the gym, without being on pred, for 5 years and aquaaerobics at my level, Pilates and Iyengha yoga as well as Bowen therapy kept me upright and just about moving. The no pred wasn't out of choice, I wasn't diagnosed and it wasn't for lack of asking!  But you have to adapt and you MUST NOT OVERDO THINGS! It is all about pacing and management - pred will manage the pain fairly well, rest and pacing manage the rest.

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diagnosed with a full width rotator cuff tear!

Hi Bert,  sorry to hear what's happening in your life.  I too used to exercise 6 days a week, weights , treadmill,

bike....  I suddenly developed pain in my right shoulder.... dx:  bursitis...???  injection.... didn't work.... next both shoulders, hips, neck...now PMR !  Wondering how you were dx'ed with full width rotator cuff tear?  Did you have an MRI or was it based on clinical evaluation?  All the best.  Listen to Eileen, I believe she is very knowledgeable with regards to PMR. 

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Rotator cuff was diagnosed by MRI.

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Rotator cuff was diagnosed by MRI.

12

Bert, am reposting a reply I made a few days ago in:

Are there any American rheumies interested in PMR?

  ( I don't know how to direct you there):

Hi Diana, you most certainly drove right by, since all houses connect to S Tropical. Hope your trip is nice. I waved, did you see?

I am 65 also!

I have a PMR theory: All of my PMR episodes follow a severe physical or severe mental trauma. And from what I have been able to gather here, a lot of others usually have a stimulating event.

I tell the following to illustrate:

12 years ago, a fully torn rotator cuff from a fall while skating (Arm turned blue)  which resulted in surgery, the First major PMR, @ 53 years old. Undiagnosed and untreated, lasted 12 months, but had both shoulders and 1 knee surgery. The first shoulder needed to be done, I think the rest was PMR, although the knee was slightly torn. In both shoulders the surgeon commented on how both were very inflamed ( arthroscopy, saw red where he should have seen white in joint.)  Then after recovery, a few minor hip flares till Dec 2013, then a  bitter, surprise, and  quick divorce (she served me on Christmas Eve after draining a few accounts,) After 60 stressful days, settlement and divorce. 30 Days later Big PMR. The minor flares were usually when higher stresses. 1 year later, taper to 3 mg, tear calf muscle, hematoma, and have to increase to 5 mg. due to flare.My PMR reaction usually takes 30-60 days from the trauma. I think it is either adrenal over or under reaction or production, and the delayed reaction is due to taxation on the adrenal cortex's? I think diagnosis related to "stress" should be amended to include "trauma."  Stress is too light a word to describe my major PMR stimulants. 

I suspect that PMR is a complex biological reaction that is not remedied by prednisone, but a pred is parallel path to supress the results of decreased cortisol?? Please forgive: got a "c" in organic chemistry. I don't think it is a substitute for what the adrenals are or are not doing, I think it is "something else". If we could stimulate or suppress our adrenals to do what they were supposed to do, or not, that would be the answer.

So...

  I really avoid doing things that could result in my prior injuries, and quit dating! [eek]  HA.

You did not include the time from your surgery and stresses to the time you had the flare and increase pred? Just wonderin'.

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I didn't have the rotator cuff surgery yet. The Dr. Told me he'd like to scope the shoulder and see if he can re-attach it. He's not sure if that will be succesful because it's massive!

I didn't really have much time to think about surgery on the right shoulder before the left shoulder ,thighs,knees,hips became extremely stiff and painful . Believe it or not all of this pain after sitting and trying to rollover in bed became worse than the pain from the rotator cuff tear! 

14

Bert, my rotator cuff was also a full tear, and needed to be done. I had 3 ortho surgeries in 3 months, 1 knee, 2 shoulders. I was 53, Took 1 year to recover, I thought it just came with the territory of multiple problems. Does low does (less than 15 mg day) help?

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dose instead of does

 

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From the time I have been on this forum what you state in your theory certainly ties in with my experiences. High level of stress and then a short time later PMR!   One reason I have retired yet again (I'm 74) and this time steering well clear of any stress or trauma if thats at all possible.

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As far as medical things are concerned - trauma counts as a stress.

PMR as we know it is not the disease - it is the name given to the symptoms of an underlying disorder - almost certainly autoimmune. It leads to inflammation - hence the raised ESR (sed rate) and CRP - and pred calms the inflammation down so relieving the pain.

There are lots of autoimmune disorders and they can be triggered or made worse by all sorts of things. Lupus is made worse just by being out in the sun.There is no consistent evidence that adrenal dysfunction appears in all patients with PMR - it has been the same with all the suspected causes, viral, bacterial, genetic (other than the Scandinavian gene pool makes it more likely). 

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Always, Eileen, the voice of reason.

I thought that cortisol, produced by adrenals, was awry, and autoimmune was runaway in  joints and muscles with PMR. How does cortisol relate to adrenals and inflamation? Is there a blood test for cortisol?  

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I agree with you, John. Stress is bad, and my PMR diagnosis happened soon after 2 trauma events recently in my life. I am 74 also.  It was a total surprise when it hit.

20

Yikes, just read:

An Overview of the Adrenal Glands

Beyond Fight or Flight

Written by Robert M. Sargis MD, PhD

Oh, the chemistry!!!