Just attended my yearly rheumatology appointment and saw an SHO rather than consultant (it sounds as if they are busy closing down face to face appointments for the time being and relying on telephone conversations, I think i was one of the last)
The main thing was that following the Dexa scan report they insisted I need more bone protection. My blood test also showed calcium slighty below the range. So, I have been referred for a Zoledronic Acid infusion in a couple of months time. I refused Aledronic Acid. My hip is showing a T score of -1.6 and Osteopenia I am pretty sure this hasn't changed in 2 years but can't find the results. My question is, do you think this is really necessary? Been on pred since 2011.
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Pollyanna16
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Your doctors ought to be able to supply your previous Dexa scan results otherwise what are they basing the prescription on?My former GP got very cross when I refused Alendronic Acid and said “ do you want to end up in a wheelchair?”
I insisted on a Dexa Scan and was then told by another doctor that I had the bones of a 30 year old. Two years later I was told that my (next) Dexa Scan was very good. I fail to understand the “ hard sell” on this powerful drug. You are right to consider carefully, in my view.
Well put it this way - that is the same as my t-score after 11+ years on pred and only slightly changed from the previous scan 4 years ago. The local osteoporosis expert was astounded. Said she had never seen reading like that from a patient on pred and to carry on as I was. Since it HAD gone down a bit I was prepared for her to insist on AA and had already had my mental fight with myself! And I haven't been taking calcium supplements for the last 2 years as they caused too many bladder problems - just more cheese and a good dollop of vit D (4000 IU).
If your calcium is slightly low - that is what needs to be investigated and remedied first. If you have the infusion and don't sort out the calcium, it will get even lower because of the way bisphosphonates work.
Oh goodness I didn’t realise that! I’m more than happy to up my calcium by dietary means thank you I will settle down & read the article with a cuppa. Just been out in the garden for an hour & my feet & hands are frozen 🥶
You wouldn't have been in the garden here - -15C this morning and barely scraped up to -7C all day. Sun was nice though Our mayor posted on FB this morning - they have managed to lay the cross country skiing tracks a bit further up the hill and he went out this morning for the photo opportunity. Decided that -16C up there was not a good temperature for athletic activity ...
Be careful though - although there is calcium in milk -its cannot be used to increase it in your diet- ie -it is not bio available. The homogenisation process through which milk goes ensures this. Most milk is not the fresh natural product, the food producers would have you believe. It is one of the most processed foods on the market. I found this out when I started making my own cheese - the calcium content availability is critical for cheese making. I can and do make it with pasteurised or raw milk. Tesco sell Channel Islands milk which has only been pasteurised but the CI milk sold in Morrisons is also homogenised. In my book any food which has been processed to within an inch of its life and cannot biodegrade naturally, is not fit for human consumption. The calcium in cheese is bio-available.
If you are concerned about your bones, you should be looking at supplementing with magnesium, D3 and K2(they work together) and more impact exercise(can be gentle) if you are physically able to do that. You will find the book "Your Bones" by Lara Pizzorno very useful.
My understanding is that the calcium carbonate prescribed by doctors in the UK along with Pred ends up in the blood vessels and does tiddley squat for your bones. If it did help, why would they also prescribe other stuff like Alendronic Acid and who wants to ingest blackboard chalk anyway? Yuk!
Sorry about the lecture! Dishonesty about food and drugs really annoys me - it's what makes us ill in the first place.
Thank you Sennetta, I had no idea about the milk but I have been taking Vit,D & K2 for some years (recommended by Chiropractic son). Am not as active as I used to be but play golf, pilates, walk & garden. I will look out the book.
I wasn’t aware the calcium tablets could cause bladder problems. What kind of problems are they? I ask as I have yet another water infection that’s gone to the kidneys
Grit can form in the urine, especially if I got dehydrated I found. In some people it can even cause kidney stones. The grit causes mechanical irritation and cystitis symptoms - the pain during urination is a symptom that can be due to infection or this mechanical irritation. Is it a proven kidney infection?
Not this time but other times yes . Based on past history they gave me antibiotics withouthaving me in and checking urine. Did have a scan for kidney stones over a year ago as pain was excruciating. No stones found but had developed ovarian cysts and thickening of womb. Supposed to have follow on scans but that hasn’t happened. Will endeavour to drink more fluids to stop build up thank you that’s very helpful
After reading about the problem you have had taking AA, I will have to look into this. I had an operation quite a big one for incontinence a few years ago, took me ages to get better, but it worked,But this while back its starting up up again 1 min to get to the loo.,you will all know what I mean. So I beginning to think it might be these calcium tablets. I've got an appointment on the 20th this month for a bone scan, the first one, since I had since I've had PMR.
Isosorbide dinitrate can have bladder effects and is used in benign prostate related urinary retention - I wonder if that can have an undesirable effect on the bladder, especially in a polypharmacy situation?
Thank you for getting back to me, that was the last one I would have thought of, be on in for a few years now,will have to contact the docs and have a word with him.
It's just a thought - the trouble is that once you get into polypharmacy you have no idea what interactions are developing. One that scares me to death is with the new anticoagulant therapies - they list things with interactions but the doctors ignore it. Nearly killed OH a couple of years ago because the drug level in his blood was 10x what it should have been - I take a different one and it was also far too high.
Just mulling this over again, that’s reassuring that your t score was similar to mine & I remember the Dexa Scan doctor telling me it was looking very similar to 2 years ago, so I am a bit mystified. I have asked the Rheumy secretary to send a copy of the scan to my GP for discussion. The report link you suggested describes the calcium results in a very different way to my figures which are “Serum calcium level, below range 2.15 mmol/L (2.2-2,6)”. Perhaps a different type of test?
My Dexa scan results were as good as PMRpro and I am 71. My GP had me on AA but I stopped taking it. I started taking it again later when GP badgered me. But I have not taken it for a while now. To PMRpro - I dint get in on my repeat anymore cos I felt guilty binning it and you made me think about that as well
I was taking A/Acid for about 18 months and followed the directions to the letter...but it still gave me a hiatus hernia which was diagnosed by a specialist who told me it was a direct result from taking A/A.... I now have this for the rest of my life and really impairs my enjoyment of food and drink....so when I am offered the infusion I will be saying no thank you! I am trying to come off prednisolone as I have osteoporosis....which could be a result of the steroids...who knows! Good luck.
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Our mayor posted on FB this morning - they have managed to lay the cross country skiing tracks a bit further up the hill and he went out this morning for the photo opportunity. Decided that -16C up there was not a good temperature for athletic activity ...
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