Newly Diagnosed Husban
Posted , 6 users are following.
Hello everybody, I'm here proxy for my husband as he is not computer literate and wouldnot have the patience to sit and read the various topics.
For many years he's had joint pains and stifness - putting this down to post traumatic osteo arthritis following a number of car and motor bike accidents in his youth.
For 3 or 4 years he's been complaining that his mattress and pillows are like lumps of rock and from time to time the stiffness in his neck has sent shooting pains up the side of his head.
Son-in-Law (a GP) adised going to Dr as blood tests could give info.
Last week he gave in, bloods were taken and phone call next day to get down to surgery - he was then told to get himself to the Rapid Assessmet Unit ASAPas she suspected PMR.
Off he went - Phoned me in the afternoon to say about drs had seen him so far and they couldn't agree, further tests required so he'd be in overnight. He didn't say in where but with help of the hospital reception and Surgery reception I tracked him down to a ward, he phoned and then was almost immediately moved agai - eventuall escaping with a large bag of meds and instructions.
Ped 40mg daily plus Calcichew and Giclazide.
He's just been called in today and arrangements for biopsy re TA.
After just five days mornings are much easier for him.
I've spent a couple of days lurking - such a lot of information here, thankyou.
0 likes, 14 replies
ptolemy jones10939
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jones10939 ptolemy
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His blood sugar was up slightly when he was in being assessed - informed that possible side effect of pred and should be monitored, tested at random intervals.
He was told that "we don't always get it right first time" re the biopsy.
EileenH jones10939
Posted
Welcome. Are you in the UK? There are support groups spread across the country which your husband might be interested in if you have one locally - they don't require computer literacy!
Sounds a bit threatening doesn't it? "we don't always get it right first time"! There isn't a lot of temporal artery to get at! And depending on how long it takes them to get round to it is even less likely to provide 100% certainty unfortunately. But time will tell.
It didn't occur to them to suggest he cut the amount of carbs he ate and then wait and see? Preferable to sticking someone on antohyperglycaemic agents immediately I'd have thought.
However - all the best and any questions - ask.
mjhollywood EileenH
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Every heard of the blood work good but still feeling signs of Pmr ???
EileenH mjhollywood
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Often - there can be a low amount of inflammation that isn't triggering the liver to produce the relevant markers. That's why he keep banging on that the symptoms ALWAYS trump lab values. And I suppose myofascial pain syndrome could cause stiffness without raised lab values - that is muscular. Why do they always assume it must be a spinal problem????
Not wanting to worry you, but there is a report that someone with large vessel GCA on Actemra still had signs of inflammation despite the blood markers being "normal" - but I can't remember where I saw it. Even it isn't perfect it seems.
jones10939 EileenH
Posted
UK
Unfortunately he's not group orientated but thanks for the thought.
Indirectly suggested cutting carbs by eating less if possible to get weight down
Anhaga jones10939
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mjhollywood EileenH
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Thx. I will do the mri. And let you know !! My father had gaint cell at 85. Maybe in my genes !!!! If you find any info plz let me know thx mj😉
EileenH jones10939
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And there is nothing to stop YOU going even if he won't.
mjhollywood EileenH
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EileenH mjhollywood
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There are probably others not so far from you - you could ask on the forums here in the UK, there are a fair number of people from the USA use them.
Anyone can arrange a table in a cafe and put up posters in rheumatologists and PCP's offices to contact other patients. Set up an email account of its own - or get a cheap cell phone for people to call to contact you without giving away personal details.
Nothing comes from nothing...
Michdonn EileenH
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mjhollywood EileenH
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EileenH mjhollywood
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I'm not - I live in northern Italy! But am heavily involved with the Uk charities.