I wrote on here for first time in August as a carer for my 88 year old mum with PMR. I was off to NZ at the time and wanted advice about advice on reduction of pred that hospital had given me after she had had a fall and ended up there for 3 weeks. To cut a long story short we saw doc before I went away and he upped her prednisolone to 5mg. She went for respite and I had a good holiday. She has been reducing by 1mg per month, although I left her on 5mg for longer. As she got down I even managed to persuade doc to let her reduce by .5. She is down to 2mg but developed stiffness and now pain in groin of left leg. Can't get out of bed and we are now waiting for on call Doctor. When I rang up he said that PMR is usually only in shoulders. Could this be a flare? She only started with mild ache in shoulders when she walked and has not had any symptoms since on pred. Need to be armed with information when doc arrives. Advice needed please.
Confused carer again: I wrote on here for first... - PMRGCAuk
Confused carer again
Glad you had a good trip.
Right, google with the images option for PMR Pain. There are loads of nice diagrams of typical pain location you can hold up. Careful not to choose a Fibromyalgia one that seem to me mixed in with the results.
Others will reply with more info, it could also be one of the common add on problems seen in PMR sufferers like bursitis. I’m not an expert on those bits.
Thanks. Will do.
Even the NHS website says hips
Hi I an only a relative newby on the forum but my initial pains that my gp diagnosed on included awful pain in bith groins as well as shoulder pain so you can tell the gp it's not just in the shoulders. Hope this helps. I am sure the experts will be along in a bit. Good luckx
Thanks. It is so difficult when it is not me with the PMR. At 88 it is difficult for her to explain what is going on. She also has a fear of steroids and thinks all her problems will disappear once she is off them !
Steroids aren't the bad guy every one thinks. They work and not everyone gets all the side effects. I am sure your mum will settle once they realise the groin pain is definitely part of our. Hope your mum get better soon.xx
Thank you
Both my hips , legs down to knees, could not walk properly, bit like a tin man walking through treacle. The doc needs to read up .
We visited a geriatric unit last week and she told them about the stiffness and pain and they didn't pick up on it. I need to be more assertive!
pmr-gca-northeast.org.uk/us...
This link takes you direct to the PMR Diagnosis and Treatment of PMR. You can download and read it, knowledge is power.
PMR is literally the impairment of the oxgen supply to muscles. That means muscles, all of them can and do become painful. One thing your Mum is 88 and the pred will have knocked out her adrenal glands and care should be taken when reducing and should not be stopped abruptly. Pred won't cure, but the aim is to find the dose where you are comfortable, not to get off it as soon as possible. PMR comes when it wants and goes when it wants into remission, currently there is no known cause or cure.
If you Mum was just diagnosed in August and is now only taking 2mg and is in pain, that means the dose is not high enough to control the inflammation. On this forum there are reduction plans. However if you email pmrgcafightersne@gmail.com, two of these plans will be sent to you, free of charge with some additional information.
She was diagnosed about 2 years ago , maybe more but in August she became very shaky and could hardly walk when down to 2. Doc put her up to 5mg. She doesn't walk very well anyway ( has Parkinsons-like symptoms that they said is not !). Has been reducing again since August. She has had no pain since being put on pred and never in groin. This has just started in last week or so.
I guess he never heard about that very typical PMR walk. My shoulders and neck joined the party many months after I started having trouble standing up from a chair or climbing steps.
PMR is NOT just in shoulders! Where on earth do they get this idea from? It isn't even a recent finding:
clinexprheumatol.org/articl...
sciencedirect.com/topics/me...
What you describe is pretty typical of trochanteric/iliopsoas bursitis - commonly associated with PMR. And it does tend to be one-sided at the start at least.
But really - symptoms return with a reduction of the one medication that controls PMR and they deny it ... IDBI!!!!!!
Thank you you all for your advice. I will be well armed when doc arrives
I had pain in arms and shoulders,plus pelvic,low back and pain and stiffness in my legs ,found it very difficult to move around untill l was given steroids.They were amazing and the pain just disappeared.lt has flared up again sometimes when tapering the steroid dose,but fortunately not too severely.I was also told by my GP that PMR does not affect the legs,obviously not very informed .l hope that everything goes well for your mother,she has probably not had a high enough dose of prednisolone to start with and has been tapering too fast from that as well.
My pain was mostly in my groin initially. I think your GP is under a misapprehension. She probably needs her dose increased. My faith in the doctor would be shaken. She deserves the same consideration as younger patients. A Rheumatologist perhaps.
The only people who will tell you PMR is only in the shoulders are people who don't know enough about it.
From the Mayo Clinic:
Symptoms
The signs and symptoms of polymyalgia rheumatica usually occur on both sides of the body and might include:
Aches or pain in your shoulders
Aches or pain in your neck, upper arms, buttocks, hips or thighs
Stiffness in affected areas, particularly in the morning or after being inactive for a time
Limited range of motion in affected areas
Pain or stiffness in your wrists, elbows or knees
Many of us would also tell you that we've felt it in our fingers, ankles, feet, calves, ribs and back, and that the pain is not always bilateral.
Your mum might have reduced her dose below what's needed to manage the current level of inflammation. Pred doesn't treat the condition. It just clears out the excess inflammation caused by the condition. (There isn't anything that changes the condition at this time.) If you're not taking enough pred to clear out the inflammation, your symptoms will increase.
Unless there are other medical conditions or medications that require her to get rid of the pred, the level she's currently using is at or below what would be the normal cortisol range produced by the body when the adrenals are properly working. Her adrenals may not be producing any cortisol naturally at this point (there's a test for that), so she may need to increase her dose and stay there. Any concerns about side effects in the absence of other problems should be approaching zero at this point.
Here's the link to the Mayo Clinic article.
mayoclinic.org/diseases-con...
Hope this helps....
I cannot believe that a doctor is so ignorant about the symptoms of PMR. One wonders what other things they do not know about.
I started PMR with pain on both side of my groins. Took me an hour to get out of bed.
I am off prednison, but I have shoulder pain and my right wrist pain which I consider manageable with 100 mg advil some day. I am happy I can function, but if the pain would be in the groin would go back to prednison because I could not walk. Why I choose not be on the pred, made me too tired, I am 71, active healthy, no medications only vitamins, and the tiredness was too much.
I think your rheumi is not well informed well, if he thinks PMR is only in the shoulders
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