Just thought I would update everyone on my pred journey. Been reducing from 10mg pred in July and now down to 7mg and feeling pretty good at the moment. Due to go on holiday in 3 weeks time so will stay at 7mg until my return on 18 Oct and then taper to 6mg/6.5mg? As my GP wanted me to start on AA I asked for a Dexa scan and finally had this a few weeks ago. The results were normal bone density: Spine L1-L4, left hip total T-score 0.6, Z-score 2.0, BMD 1.075 g/cm2, left hip neck BMD 0.897 g/cm2. No idea what these numbers mean but if its normal that will do and maybe the GP will now stop asking for me to go on AA?.
Many thanks for everyone who has given me advice and I'm sure that I will be back with some more questions. Fingers crossed for the taper in October.
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Middleton22
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Thanks for replying so quickly. Yes I have been taking the calcium and vit D ever since starting on pred but I had to ask the GP to prescribe it. Just ordered my prescription for medication so that I have plenty to take away with me - just in case.
My son went on it two years ago, I treated him for a special birthday, he works too hard!....he has always raved about it....he is not the cruise type, but being Norway, no children on there so loved it....he has two of his own, but it was different if you know what I mean....
we cancelled our cruise to Norway for this month. Didn’t want to risk having covid on board ship. I now have covid at home and am so unwell. Local hospital sent anti virals to me by taxi yesterday. Thank God for the NHS.
I don't understand the numbers either: AP Spine L2 L3 L4 T-score 1.8 Z-score 2.8 Femoral neck (Left) T-score -0.1 Z-score 1.1 Total Hip (Left) T-score -0.2 Z-score 0.6 Have been told to take AA, what's your thoughts about that please? Am taking calcium & vitamin D
Ignore the z-scores - that is comparing you with others your age many of whom have low bone density anyway!
Is that t-score for the spine 1.8 or -1.8? Any positive score is showing bone that is denser than the average of when you were 30.
With t-scores like that I think I would be asking what on earth they are thinking even suggesting AA. Calcium and vit D would be the usual recommendation - but those t-scores are pretty much normal and would only indicate requiring calcium and vit D.
Yes it shows 1.8. I was put on AA before the results came back so maybe they were just being very careful? I don't like taking it so will stop & have a word at my next appointment. Thank you very much
Those figures do suggest you MAY have some osteoarthritis in some areas - that can make the dexa results appear higher than they should be, Whatever - I'd struggle to understand why you need something to INCREASE your bone density.
Have you contacted The ROS? Their helpline is brilliant.
What are appropriate daily doses of calcium and vitamin D for PRM people on prednisone? My doctor has me on a calcium/magnesium supplement and I already take 400 IU vitamin D daily. Is this sufficient? Thanks!
I take 4000IU vit D. The UK mainstream medicine recommendations for vit D are, to put it mildly, conservative! In order to keep my blood level in the acceptable range I need 4000 IU - I'm 70, at 65 you make about a quarter of the amount of vit D in response to sun exposure than we did at 20 and there is very little in diet. Our local guru here in northern Italy recommends at least 2000 IU at a latitude where theoretically we can make vit D in skin all year round. 80% of the local population is said to be deficient.
The recommended calcium supplement levels are about 1200mg elemental calcium/day - 2 tablets of most supplements. You can't absorb more than about 500mg at a time so 2x dosing of 1500mg calcium carbonate is all you need.
Thank you everyone. The ship we are going on is adults only. Know all about the prices in Norway but don't think that we will be spending much ashore. Really looking forward to it as our holiday in July was cancelled by Tui. Got our autumn covid boosters next week so hope everything goes smoothly.
interested to read the comments re AA. I assume this is Alendronic Acid. I’ve been on Pred for four years ( now down to 1mg for second time) and I’ve been on AA and Adcal from the start.
I have had concerns aboutAA and discussed those here, but recent dexascan revealed scores in osteopenia range. I’m on 7 reducing to 6.5 Pred as you.
I went to my dentist last week - highly qualified and does teaching in hospital- and always enquires carefully re general health. His reaction to my concerns re AA was “Take it!”. Says he has a lot of patients who take it (this is retirement on sea!) and bad reactions are very few. Whereas he has seen quite a few patients with serious teeth / jaw problems from bone density loss. I’m going to trust him - and give it a go. Fingers well crossed!
Hallo again one of my fave people! My T scores were: Spine -1.5; Hip -2.2; something else, maybe neck? ( that the GP rattled off so fast on phone that I didn't catch it despite asking him to repeat): -1.5. He informed me that I had Osteopenia. I didn't get a Z score. I did go through to a website you recommended and read the explanation there.
Following my dentists advice, I thought I would give the meds a try - but if they make me feel bad I shall stop. The GP says he has prescribed a newer version of AA which is better on the stomach - but I can't tell you what that is as I haven't been able to collect it yet due to inefficiency at the surgery (again!). Does this sound reasonable? (After a stuttering start 7 > 6.5 mg this reduction now going ok on Week 4 DST)
The one you missed was probably neck of femur - the bit that fractures so easily - and the hip reading you quote was total hip. That -2.2 is low, the others are fine.
If your dentist is happy then fair enough providing you don't have any other problems. It is usually the dentists who have a big problems with bisphosphonates!
Thanks for your prompt reply. The AA replacement I have just collected, it is Risedronate 35mg. Other problems, apart from the wretched PMR:
a. Prostate being monitored - was about to have a post-scan Biopsy as a "small lesion" had shown up but then had a DVT so that was put on hold. PSA count then went down to a safe level so now on monitoring and just had blood test this morning.
b. BP raised at surgery this morning but I had been rather running about - normally its OK and controlled by meds. Probably all the emotion of HRH funeral yesterday which I found immensely moving....
Screwing up courage for hydrotherapy!!! I won the sweep - get 2 sessions this week - would have preferred one and one hands-on physio .The pool is just exhausting ...
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Found my pred level?
Dexa scan results / Osteopenia
7mg :)
Back down to 7mg…..again, but…..!?
Action Plan Update-Get a Dexa Scan- Easier said than done.
