Was I misdiagnosed with PMR?

Bones, joints and muscles
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Good Morning!  This is my first posting on this very welcoming, informative site.

Over the past year, I've been treated for psoriatic arthritis/fibromyalgia, breast cancer, melanoma and PMR.

My story began iIn July, 2017, at a follow-up visit to my rheumatologist, she asked if I ever experienced pain in my neck, shoulders, upper arms and/or hips.  Since I've suffered chronic pain for the past 12 years, I answered yes because I always have pain somewhere in my body, but it has been manageable with hydrocodone.  When I honestly answered I did at times have pain in the areas she mentioned, she stated definitively, "You have Polymalgia Rheumatica and I'm starting you on 10 mg of prednisone". 

A month later at a follow-up visit, I listed for her the long list of side effects I'd begun having from the prednisone, including fatigue, shortness of breath, excessive sweating and shaking and brain fog.  She didn't address any side effects except for brain fog, stating it was caused by the hydrocodone.  She informed me she was cutting my dosage in half. 

The next 3 months were horrible for me.  I managed to reduce the prednisone from 10 mg. to 6 mg., with the side effects becoming more pronounced.  I was unable to leave my house except for doctors' appointments because of the sweating, shaking, shortness of breath, etc.  I also realized that the pain I had told her I experienced when she questioned me was no different than before the diagnosis. 

The drastic reduction in my pain meds left me feeling even more fatigued and fragile.  I also realized that taking the hydrocodone over a ten year period had never caused brain fog as she stated.  I messaged her requesting her advice about weaning off the prednisone and restarting the full dose of pain meds.  The message and a follow-up phone call to her office went unanswered. 

Now convinced, after reading all the messages and responses on this site, that I had probably never had PMR, I slowly weaned myself off all prednisone.  Nothing unusual happened after I stopped the pred. The side effects gradually dissipated.  I did, however, experience the return of all my prior arthritis pain.  I asked her to prescribe my usual full dose of hydrocodone, but she adamantly refused, saying I would overdose.  I have not once varied from the original prescribing guidelines, asked for an increase in dosage or requested the medication before the fill date.  I was on the prednisone for four months, never experienced any "flares" or felt any additional pain other than what had been normal for me for 12 years. 

Has anyone ever experienced anything similar to my strangely haphazard diagnosis?  Any thoughts or ideas that I was misdiagnosed?  Thank you, one and all.  Good wishes for your speedy recoveries.

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Hi kay79624

Apart frm the symptoms your rheumatologist asked you about i.e. neck pain, shoulder pain, upper arms and/or hips...did you have any blood tests carried out that collerated with your symptoms???..

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Since you say prednisone I'm assuming you are in the USA and have been caught in the "anyone who wants painkillers is, by definition, a drug addict"?

IF hydrodcodone relieved your pain then it is pretty unlikely it is PMR. The ONLY thing that relieves PMR pain is pred. 

Your doctor hasn't a clue - 10mg is useless for a starting dose in PMR. The Guidelines say "not under 12.5mg" and "the lowest effective dose in the range 12.5 to 25mg". And if there isn't a good response to 15-20mg of pred - it isn't PMR.

However - if the "side effects" increased as you REDUCED the dose from 10 to 6 - I really do doubt they were side effects. Whatever - you had problems, not arguing with that.

But really - find a doctor who knows what they are doing. I don't think she does. If you had a diagnosis of psoriatric arhtritis - it would very likely resemble PMR but would respond far better to other drugs, pred may help, but not necessarily. 

The more stories I hear fro the USA - the more my mind boggles!!!!!

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Yes, lilian05079.  I have blood work each time I see my rheumatologist, and the markers for inflammation did show a decrease after the diagnosis, but I know from past experience that prednisone is an anti-inflammatory.  Because of the psoriatic arthritis, even with taking the arthritis medication Xeljanz, my sed rate and C-reactive Protein readings are always elevated.  So I am not certain that the blood work results correlate with PMR or if the prednisone always decreases the inflammatory markers no matter the condition.  Thanks for replying.

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Eileen,  Thanks so much for your response and information.  I was hoping you would reply because of your extensive knowledge and common sense.  It was because of following this forum since I was diagnosed with PMR that red flags were flying in front of me.

Yes, I live in Boston, MA and feel such empathy for chronic pain patients who have been caught up in this opioid crisis.

I had the feeling from the beginning that something was "off" about the entire scenario.  It was so "out-of-nowhere" and I had been feeling OK that day she diagnosed me.  I suspect (though most others feel I'm being a bit paranoid) that she had directives to get her patients off of pain meds and this is the route she chose for me.  I've been advised by all my other specialists to find a new rheumatologist, and I am doing so.  I did go to a hospital pain clinic, and was immediately prescribed my full dose of pain meds.  

It's frightening to realize that even the "best-rated doctors" can play with their patients' health the way I was manipulated (and thus suffered the loss of quality of life and precious days allotted to me).

God Bless You, and thanks again.

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Last sentence - mine too!   However do people cope with American doctors?  From what I have heard the  NHS has a bad name (for many), but nothing as bad as the American health care - and it isn’t even free!!

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Hello

I have had wonderful and caring experiences with my doctor in the chicago land area.

Due to difficulty reducing symptoms on prednisone even at 30mg, now. my rheumi is suspecting myotosis , as well , and is also getting me evaluated for MS

as some symptoms are not ringing true as they did in the beginning for PMR.She is always thinking and trying to do the best thing.

She wants to make sure we are on the right track at all times.

My blood work , (extensive ) is never that far off normal, but she has said thats not always indicative ,esp since on the steroids. .Initially in march pretty classic pmr and suspect Gca , Biopsy normal, But now due to how thngs are going she is questioning that .Concerned at lack of relief from that dose  of pred.and also the fact that the pain med she prescribed does help.

Again in March that wasnt the case, instant relief back the..

Sorry your card has been substandard, but hopefully you can find someone better.

They are out there.

The prescribing of narcotics is getting much stricter, as it should , but it will not be good for the patient population out there like yourself that  need it..

Wish you well.

galp

 

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She sounds a good find! She seems spot-on - and CARES. And that is the thing I find so strange - a patients is obviously NOT well and in pain but the doctor seems to be blaming the patient...

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I’m new to this site and just wanted some advice , im seeing a rheumatologist on Thursday. My blood test are all normal by the way. I asked my gp what she thinks this could be and she said not sure see on Thursday. I have pain in hands and fingers , back pain top and shoulders, ankles. my left knee feels like really bad sunburn, but the pain across my lower back over my hip feels like I’m being ripped open I can’t carry anything on that side or walk to far because of the pain I’m not sleeping sometimes it’s hard to string a sentence together I muddle up words sometimes creating new ones which my grandchildren find amusing. I’m so tired and just want to no what’s wrong with me hopefully you can help. By the way I’m 57  

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It sounds as if you do have some form of autoimmune problem and some of the things you describe COULD be PMR - but they are so non-specific that it is hard to say. Most doctors will say PMR does not affect hands and feet - it does - nor that you can have normal blood markers, yes you can in up to 20% of patients. The GP may not have looked at all the possible blood tests and is probably leaving it to the rheumatologist.

The pain in your lower back COULD be muscle spasm, perhaps due to myofascial pain syndrome - and a physiotherapist or therapeutic massage therapist may be able to help relieve the pain. I and a lot of people I know have obtained a lot of relief with Bowen therapy but it doesn't work for everyone. 

But really - you will have to wait for the rheumy's opinion as your description could apply to so many things. You don't mention stiffness - and that is a cardinal symptom in PMR, it is very unusual not to have that. But everyone is different as we keep saying!

Do let us know how you get on on Thursday.

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Hi Eileen 

Thank you for coming back to me , I realised I should have done a new thread after so sorry for that . I do have stiffness in my knee sometimes, also I had a bifimeral bypass 3 years ago and my left kidney removed last year I thought could this have caused nerve damage around my hip area ? But it does not explain the pain in the rest of my body 

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Hi tina14421

Have you been tested for B12 and folic acid deficiency. Deficiency can cause the pain you are presenting with and the 'not being able to string words together' sundrome.. in other words can't think straight...also fatigue..do have fatigue and low energy?.....my best wishes to you...

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Sorry spellcheck 'Syndrome' not 'Sundrome'....

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well said, and so sad.

Imagine how hard for those with no support systems, or where with all to question things. 

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Thanks so much to all of you dear people who responded to my post.  This time I'm interviewing rheumatologists before selecting one to treat me.  I wanted to suggest to Tina 14422 that your pain patterns sound very much like mine did at the start of this journey - all over the body.  I agree with Eileen that it sounds like an autoimmune condition.  Of course, it could be something else entirely, but with so many joints involved, either RA or PsA spring to mind.  When I initially began having pain, my blood work did not catch up to the pain for several months.  It actually took at least six months until I was diagnosed.  Good wishes and prayers go with you when you see the rheumatologist.