I rang the help line for Rheumatology this morning as the shoulder and necks pains I have been getting are worse.
They eventually returned my call, said the bloods were normal and that because I am not taking Alendronic Acid I must go for an X-ray to rule out a compression fracture.
"No it can't be a relapse as you wouldn't be getting pains in the shoulder and neck with GCA. We don't need to see you." Oh and do not take any more than the 6mgs of pred.
I'll pop along for this X-ray tomorrow.
So, it begs the question, would I have been treated differently if I was taking the AA!!
It's almost confirmed my suspicion that because I don't want to take the AA they don't want to be bothered with me.
Sorry for the rant.
Written by
Primarose
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What drivel! Some people develop PMR symptoms as they reduce the dose of pred - the GCA doses are high enough to deal with them initially. As you reduce you could well get shoulder and neck muscle pain.
Now I might be wrong - but taking AA wouldn't magically protect your from compression fractures. Wonder what they will say if the x-ray shows no compression fractures?
The connection is that AA is one of the drugs prescribed specifically to help increase vertebral density. (I would never take any of the drugs, btw.) There are exercises one can do to straighten and strengthen the spine. And there are also ways to move the body in everyday life to avoid positions which might stress the vertebrae.
I thought neck pain was one of the symptoms which quite often appears with GCA, and certainly with PMR. It was one of my most crippling symptoms by the time I got diagnosed but admittedly it hasn't returned, thank goodness. Good luck!
They seem to have a fixed route in their head and you aren’t following it. Have the X- Ray. I am sorry you are up against this. Evidence filters out that this is, alas, not the wonder drug that they were sold. It takes years for this to translate into a new treatment protocol. I wish, wish, wish that it delivered what they think it will. Other opinions are available. 😕
I would request another Dexa Scan and this time ensure you get the correct results.
I had one 6months into GCA - bones fines. Tow years down the line - another one - bones fine. Eventually 5 years and into remission - last Dexa scan. Bones still at 90%.
One thing, if they had not been, I would have not taken AA. Look at the National Osteoporosis website and read up on the alternatives. But make sure you need them and not given them as, what I call, "just in case". I don't like 'just in case' I prefer to wait and then deal if it happens. However, every decision you make is a personal one, your body, your decision.
Always request the figures - not an interpretation. Doctors are sometimes very keen to make the ignorant patient think things are worse than they are. Osteopenia is a natural state - and isn't the same by any means as oseoporosis. Being on steroids is a risk factor for fractures (they say) but there are many other things just as or more significant and all of them must be taken into consideration in assessing your risk.
I think that this is what they were trying to do with me PMRpro, the actual results when I checked did in fact indicate osteopenia. The Dexa scan results said osteoporosis. It was six months later when I received a letter from the consultant that they said I had osteopenia.
That reminded me of my GP who says I'm a ticking time bomb for a stroke or heart attack. She says the only risk factor I DONT have is I'm a non-smoker. She said that "unless I became skinny" all of a sudden, which she doubted, I needed to go on a statin. She also said, sarcastically, that she didn't get a commission for prescribing statins..
I hate the feeling of being coerced into taking a medication.. it's like sitting through a sales pitch of something you have no intention of buying just so you can have a free gift..
Skinny people can have high cholesterol, I'm quite small.
When I told my doctor that I was frightened to take the statins he didn't press it. The "bruiser" nurse who took my bloods on Tuesday gave me a lecture about not taking them though, nasty so and so she was and I've got a whopper bruise on my arm.
Now I know her name she will be ticked off my list!
I had blood taken a couple of weeks ago and had a huge bruise only to discover they had forgotten to do half of the tests! They used the other arm so I then had two bruises.
I would refuse to see her - there is absolutely no reason why patients should bruise that badly if the phlebotomist knows their job. I'd have been ashamed had I done that to a patient.
I thought that my daughter was just unlucky, how wrong I was. None of the other nurses at the Practice cause bruises. I shall make sure I know the name of the nurse next time.
My doctor has done most of my blood tests, you don't even feel the needle.
He likes taking bloods. Before he joined our surgery he was based in a large teaching hospital in London, caring mainly for drug addicts. He said that you would be amazed at some of the places where he took bloods. On the person I mean!
Accounts for it then! OH has had blood taken from his feet - that was post chemotherapy, 9 times of 5 days of constant chemo infusions didn't leave his arm veins in a very helpful state! 25 years on the local regular vampires here in Italy never fail to get access for blood. Still sometimes a bit wobbly for getting a cannula in - and a couple of days ago one failed to get blood first time. I've done back of hands - makes me squirm though - but never had to go to feet.
I've had feet done too, never again, as always been 'awkward' in them getting a vein and when they do I don't always want to part with it - even though I hydrate well prior - they have even less choice now only one arm to choose from, once had it taken from base of the thumb - there was a nice juicy one there!
Cholesterol paradigms are shifting. It is becoming more and more apparent that lowering cholesterol through medication is contra indicated in most people that take statins.
What gets me the most is that GP's in Spain are, and I quote: "only responsable for checking BP and weight, things like that". With such a limited job requirements, they could at least stay abreast of the latest on related subjects like cholesterol.!
I don't see the point of that - they are aware now of what I always said from day 1 of the cholesterol rubbish: restricting dietary cholesterol is pointless as your liver produces the vast majority of the cholesterol to be measured in the blood. And now they admit that eggs are good for you!!
Remember Joan had a stroke, nearly 10 years ago, the stroke clinic put her on a bowl of 'proper porridge, every morning and an orange to follow'.
Cholesterol down in six months to 4.9 and it has never risen. I understand the 'porridge', never understood the orange and everyone I ask has always said 'an orange, really' and that includes medics. I often wonder if Joan and Jean (I was ill at the time) misheard. 89 this year and she still lives on biscuits, cakes and every bit of sweet stuff she can lay her hands on.................. 'Dancing' Queen, no way 'Sugar' Queen yup. C'est la vie.
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