Confused .com !!!
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PMR or not PMR ??
I had my appointment with the rheumatologist this morning who despite the registrars thoughts 2 weeks ago is not convinced that I am presenting with PMR .......
The contradicticting factor being inflamation levels (not sure if that's the correct technical term ) was back to normal , but this could be as a result of the steroids !!
My age !!!!! This I did find a little hard to understand , as we are all do very different !!
my bodies response to pred within 24 hours and the dramatic deterioration when reduced from 20 to 15 within a 24 hour period .
Now bit of a mystery of which I am left feeling more helpless and alien like !!
she has ran more detailed bloods : thyroid function , liver function , repeated vit d' vit c , FBC ...
MRI of my lower back and Dexa bone scan
she also wondered if early menspsuse (2011) completion could be a contributing factor , or viral infection !!!!!
help .......
all I know is that I feel rubbish ... My body has changed , the symptoms have crept up over time ... Crashed 2 weeks ago
pred has made a dramatic difference in the pain to my elbows , deep shoulders and back .
i am now exhausted , learning to go with the flow ,and manage the muscle pains that have gripped me following the completion of the most simplest tasks .... So frustrating ... Like doing an hour weight lifting just lifting the kettle !!!
have booked a session with a Bowen therapist for Thursday as I hope it will help with the neck and lower back pain that that I has been lingering .
any thoughts , advice ,pointers,would be greatly appreciated right now (:
helene
1 like, 21 replies
EileenH helenemiles
Posted
There are some doctors who refuse to accept that there are some younger patients who present with probably PMR - but they don't appear in the literature because they aren't recognised! It's a Catch 22 conundrum that drives most of us up the wall! Of course your ESR/CRP could be back to normal after 2 weeks of pred and if you have fewer symptoms, especially if they weren't terribly elevated.
If she insists you do not have PMR and removes your pred and it all comes back without her finding another answer that works - is a second opinion (privately if necessary) an option? I don't think you have told us where you are.
I'm assuming she's left you on pred for the moment? This is a permanent problem we face - one doctor thinks it is (and your clinical presentation was fair enough or I wouldn't have suggested it) and the next, who didn't see you in agony, disagrees. Oh for a diagnostic test...
Keep your pecker up - she hasn't come to a conclusion yet and she could be right.
helenemiles EileenH
Posted
she has prescribed more pred for another month , but has recommended that I 'play ' with the dose dependent on my symptoms . She suggested a gradual reduction if possible as is concerned regarding the side effects . Suggested trying to increase pain killers .... Anti -inflamitories if possible .
Bizarrely all joints are now moving nicely but ache and hurt like mad if exerted !! No stiffness at all only deep pain left is now in my lower back and the nape of my neck .
spoke to a lovely Bowen therapist today following a few e-mails over the weekend , and hope that she will work wonders on my achy bits .
As for the lethargy ...... So so tired
hot sweats .... No dripping beds for 5 days
daily furnace eruptions appear to also have lessened ... (Don't want to speak to soon as when I thought they had gone last week they then reappeared !)
I am from Coventry (England )
my thoughts re oestroporodisis : not that I'm am expert !!! Is that I wouldn't have imagined its presentation with such a combination of symptoms that increase and take over the whole body in the way that I have experienced.
not sure whether my thoughts are correct but I am feeling very bemused right now x
EileenH helenemiles
Posted
The osteoporosis fear is it is one of the side effects of pred. Maybe - I have yet to be totally convinced. I, and others, have been on pred for 5 years or more and have no osteoporosis, onlly about ahlaf of people do. At least you're getting a dexascan - some people have to fight for them! Unless they do a dexa at the outset they cannot know if it was the pred or whether you were osteoporitic anyway...
helenemiles EileenH
Posted
Despite the awful time ..... I do need to remind myself having read lots of other people's stories , I feel very fortunate to be accessing such investigations considering the short length of time from the onset of symptoms compared to others .
For that I must remain very grateful .
with thanks
Helene
leonard12916 EileenH
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EileenH leonard12916
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MrsO had crumbling teeth when on pred, hadn't happened before and hasn't happened since she came off pred. But other than saying that I'll leave it to her to say more.
leonard12916 EileenH
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EileenH leonard12916
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It is possible that the PMR has messed up your upper back and neck muscles and you have a changed bite - ask your dentist. I had a "wrong" bite that gave me awful neck problems - it works the other way round too.
leonard12916 EileenH
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EileenH leonard12916
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leonard12916 EileenH
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EileenH leonard12916
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What is far more to the point is to have a dexascan done to see if you NEED it. My bone density was fine after 3 months of pred, I had another scan after 3 years of pred and it was still the same having only taken vit D and calcium supplements. Suppose I must be due another soon.
MrsO-UK_Surrey leonard12916
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leonard12916 MrsO-UK_Surrey
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MrsO-UK_Surrey leonard12916
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