Saw GP this week for review (PMR since Nov 17, comfortable on 10mgs, trying slow taper) , that was all reasonably ok, then he totally there me by saying he recommended a scan to check for osteoporosis. I'm afraid at the mention of the word scan, I immediately said no, as having had a MRI in the past, I could never go through that again. Anyway the GP backed off straight away and said that I could take preventative medication and gave me a prescription for AA.
So of course when I got home I looked up the relevant links on here, found out that the scan is "open" , so could manage that. As for the AA meds, possible side effects worrying and would not want to start taking it without confirmation that I was at risk of osteoporosis. So , when I go back to GP, I will take up his offer of a scan! And will do my homework beforehand!
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My GP prescribed 2.5 mgs of Diazepam for my MRI Scan, presumably it’s the claustrophobia you mind. I felt very relaxed and just kept my eyes closed. It has to be said that not everyone has trouble with Alendronic Acid, notably DorsetLady and you know how sensible she is.
Op done last Monday, out on Thursday, finished the heavy drugs yesterday, shower, hair wash this morning - system settling down today! So on the right road!,
Did a bit too much first day home - what is it I’m always saying about “pace yourself”- but have learned my lesson 🤦🏻♀️
I think getting home and starting to lead a more normal life, rather than hospital life makes a world of difference. Also having a shower, do you have one of those leg protector things to stop the dressings getting wet?
Yes it’s the little things you can do in your own time. Certainly having a shower and washing hair! Don’t need a leg protector, dressing is waterproof so long as you don’t get too much water on it! Seems nice and adhesive still.
Good to be back, except turned to Portuguese one day, and not getting any email notification - will sort that that shortly I hope!
Glad to hear it's all behind you and physio organised. Speaking from recent experience, that first shower and shampoo is so very welcome - as is sleeping in one's own bed. We'll all be keen to hear of your progress, please let us know when you're up and about. Best wishes for a full recovery - at a sensible pace!!!!!!!!!!!!!!
I’ve been on Alendronic since 2011 with no problems at all
Nothing to worry about, you are lucky you have been offered a scan. I had a fight to get mine. Had to go private in the end. Well worth getting it done.
Thanks for helpful replies, I am reassured that the scan is nothing to worry about (from the claustrophobia point of view). I've seen on other posts that some people have struggled to get one, and here's me throwing it back in the GP's face!
I’m a year & half from ‘passing’ on a scan from 2 Doctors. I didn’t want those drugs. So I really wouldn’t have taken a prescription unless I had to. Now I’m due for a physical & I'm going with I want to strengthen up a bit since my surgery. I believe stregthening exercises will do more than those pills.
I found it very pleasant - lovely cushion, very comfortable and they tuned me in to some radio station where the music was fantastic. Now this evening I'm going for yet another MRI - the less said about that, the better!!
Of all the Scans that I've had, over the years, and I HAVE had a lot of them this- I believe- DXTA (or similar) scan is one of the easiest. Do go back, to your Doctors/Consultants, and just 'Talk' to them. Explain, by all means, your fears and why you refused the scan, to begin with. They may laugh with, rather than, at you so don't be afraid.
These scans 'check for' Bone Density, are you on Steroids? If so, then it is purely precautionary and IF there is a problem, which I doubt, then it can be addressed.
Either way there is absolutely Nothing, to worry about, just lie back and relax- it will be 'over', in no time.
Thank you AndrewT for your helpful comments, I will definitely be explaining to the GP why I refused the scan and take it from there. Everyone is so reassuring, I'm almost looking forward to having it!
I had a dexa scan last week, and as the others say, it’s just like lying on a bed. I am so squeamish and claustrophobic, and even walking through hospital doors makes me sweat. I already had osteoporosis prior to having PMR, and my current scan is to check bone loss since being on steroids. I am still avoiding AA, and see what my results reveal.
I can understand how you feel, but it’s just like having a lie down!
Thankyou. I won’t hear for another couple of weeks, but my osteoporosis was diagnosed after my previous scan, so am hoping, since taking prednisone it hasn’t worsened, but as it’s one of the side effects, am unsure. It’s better to have the scan, and it gives you piece of mind!
Yes I suppose you've had a chuckle that a lot of us have had to fight for one and you have just refused it. Still easy to rectify and as others have said not invasive at all.
I am at the same stage as you. Diagnosed last October on 10 mg of pred ( although was so poorly last week I have increased and joined this lovely group for advice!!) Can I ask, are you in the uk and does your gp honestly believe there could have been damage through steroids to your body already? I am panicking now!!!
My gp asked me to go for a blood test last week, must be the 10th since being diagnosed, so decided not to go, to listen to the comments in this group and try and make sense of it all myself. I feel my gp is just "guessing" the next stage.
If there is going to be damage it MAY happen quickly since it is said the most bone density loss is in the first 3 months - except they can't really tell unless they had done a dexascan at the start. I've been on pred for 9 years, after well over 7 years there was no significant change in bone density at all. It doesn't affect everyone - but it is a good reason to have a baseline dexa done. Many people already have low bone density, nothing to do with pred although it always seems to get the blame.
Hi there Osteoqueen, agree totally about this lovely group, so so helpful and informative. Yes I am in the UK, up in Yorkshire. I honestly don't know why my GP recommended the scan at this "early" stage, although reply from PMRpro says damage may occur quickly. I remember when I was first diagnosed I had low levels of vitamin D , so had to start with vitamin D tablets then, that may be relevant or not. I have regular blood tests as well, not as many as you though, and I have online access to my test results, normally I just look at the inflammation markers, but maybe a closer look would be helpful. I'm due another test in two weeks. The GP always gets my blood results up on screen at review , do you get the opportunity to go through them with your GP? .
The early stage scan is to get a baseline - otherwise you can't tell if the pred has done any damage or whether it was already there. And anyone on pred should be started on calcium/vit D supplements because the pred makes you lose more calcium through the kidneys and vit D is essential for bone health.
Homework's a good thing but you don't always think to ask what type of scan when all you can think about is an MRI! I hate the MRI too but now have to have them annually! (for another reason) but I'm learning how to tolerate them...I never open my eyes - it's the face mask I don't like (for a brain scan) I freaked out the first time they 'clamped' it on as I'm claustrophobic of the face. Usually takes the third 'CLAMP' before I'm relaxed enough for them to start - but they are so lovely the technicians.
The dexa scan is a breeze, nothing closed in at all, it's exactly as been described already. I would have it if I were you, some on here never get the opportunity! I cannot take the AA as had side effects, changed it for Adcal. ATB.
Thanks very much for your encouragement, I had to read through your MRI experience with gritted teeth though, I so admire you for getting to the stage where it's tolerable. The DEXA sounds a doddle!
It's 'needs must' as they say - I've tested positive for MS and haven't been started on any disease modifying drugs as I'm not displaying some of the symptoms - weakness in the arms and legs - must be my core strengthening exercises!!! Basically they say I'm stable, thank god, but as three tests show MS they have to monitor for any changes. I've just gone onto annual BS's from 6 monthly, another thank god and no I'm not religious! So hopefully will remain stable for a very long time! I've got enough at the moment. All the best with your scan, it's nothing to worry about - go for it girl!
PS: It was my hubby who changed my attitude towards the brain scans, - 'do you think you could get to like them?' he said one day, I thought he was being funny - what he meant was if you've got to have them try to accept that and it might make it easier - so I changed my attitude and it helped me to stop the worrying a few days before that made me a nervous wreck!
Oh that's such a lot to deal with, thank goodness you are stable, let's hope that continues for many years. Your husband sounds like a rock, just a gentle suggestion for a way forward, giving you time to work on it yourself. It is all in the mind, I knew I would struggle during my 1st and only MRI as I had had a massive panic attack during an outing exploring a disused mine, it was terrible. I had never experienced claustrophobia before then. It was my daughter who helped me, she told me to imagine that I was in my favourite place, so I focused my mind on being a beautiful sunny beach with my dogs running in the sea. It helped but it was hard not to think about where I actually was.
Thank goodness for the support we get from our family and friends, and here of course, keep up with that positive attitude, I will try to follow your example!
Thank you Chris and for your good wishes. Yes hubby can be useful in times of crisis. They do say to focus on something nice if you can, but it's easier said than done. You were brave to go down the mine and I can understand the way you felt re the MRI having suffered that panic attack, not a nice experience at all. I have to concentrate on my breathing otherwise if I get out of sinc with it the panic starts. It's only if anything's on my face I get this I just can't breath....I'm okay in lifts - I once was trying a dress on in a store and got it stuck on my head as I was trying to get it off, I couldn't pull it up or down from my face and started to panic, I had to concentrate on my breathing through the material!! and as i calmed was able to somehow get it back on - I had to call the assistant to help me get it off - it's still unbelievable when I think about it now.
As you say we know where we can come for support, it's invaluable.
PS: Coincidentally I've just come back from taking hubby for an MRI, so glad it wasn't me, kept thinking about him the whole time and what he must have been feeling like, he came out unphased!
Oh goodness I'm in awe of anyone who can have MRI and come out smiling. I did the deep breathing too, felt on the edge of panic a few times, awful. Incidentally, going down the mine was my idea, I persuaded some of my family to do it, I couldn't wait to try it!
I would hate getting my head stuck in a dress too, I find it easier now to wear loose fitting clothes, I struggle getting my arms up and down.
I'm so reassured by everyone 's comments about the Dexa scan, it's been really helpful. Best wishes, Chris
Me too, what keeps me going is when I see very elderly persons coming out of the scanner looking so dishelved and wondering what just happened! - yesterday a young lad 14/15 years old came out from his scan - he looked in a daze and very red faced but told his mum he was okay.....I keep those images in my mind and tell myself to get a grip!
Hubby trained as a mine surveyor in the 60s and used to say 'you should go down and see the conditions' but I never did.
I too struggle with the arms now so that won't happen again!
You can see what a lot of love you're getting from everyone.. So do have the Dexa scan - and the MRI too, if the Medics advise it.. As one of the others has told you - you can be "Pacified" beforehand. As another writer said - How lucky you are to be offered these tests! - Some of us have to dogfight for them. I contracted osteoporosis (and diabetes) about three months after starting on preds due to GCA. Two crush fractures of the spine, and all that. That's even less fun than scans, I promise. Also do chase your Doc for Adcal (calcium carbonate and vitamin D) for your bones - AND the alendronoc acid. Just do it. There are times in our lives when we must drop our independence, and just lie back and go along with those who are trying to help us - I think this is your time. I am an absolute spaniel these days Chris!
Thanks Arthur, comparing yourself to a spaniel made me smile, I love dogs, will have to try getting into that tail wagging, roll over mode next time I visit doc!
(2nd attempt at sending this 1st one completely disappeared).
I have GCA-I’m having my eleventh dexa scan on 22nd August 2018. I have them every two years to check up on the effects of my Klinefelters Syndrome induced osteoporosis. I know the Klinefelters came first because I and every other sufferer is born with it. Caused by mistake in cell division inside Mum before I was born. I can’t say when the osteoporosis started but I know that two upper spine discs fused together when I was fourteen which made lying on my back problematical until I was diagnosed in 1996 when I was forty-six. I had seven ribs fracture between 1986 and 1996 so this era was obviously a time when the osteoporosis was particularly active. Little things like pulling a fishing road apart, sneezing when I had a cold, moving office furniture when employed, lots of them were doing this. I actually was recovering from a rib fracture when I was diagnosed.
Dexa scans are much better than any other sort of scan that involves lying on one’s back though the plinth is rather hard that one lies on though the addition of a pillow under the head makes it more comfortable and eases the pressure on my spine.
The dexa scope moves along the bed and over you, all the others you are drawn into the tube.
I have Testosterone Replacement Therapy for my Klinefelters and I thought that would be sufficient to prevent additional osteoporosis when I developed GCA in 2014. I certainly didn’t want anything to do with Bisphosphonates as Janet my wife had been on them for eight years and suffered horribly with soft gums when she needed teeth out. I found out quite quickly that the average G.P. knows next to nothing about G.C.A. and mine bumped my steroids up too high and the osteoporosis reactivated and I still have it.
I’m sorry this is a bit longwinded but I needed to explain why I’ve had so many DexaScans. There’s a little bit of discomfit when the technician is positioning your feet for the hip scan but it’s over quickly.
Thank you Colin for your helpful reply, having had the osteoporosis for so many years I can certainly see why you have frequent scans. I know very little about the disease, and never had any fractures , it must be awful to be at risk of a fracture by doing simple tasks. I hope you keep well, best wishes Chris
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