I had my first dexascan yesterday and am told that I have osteoporosis in my spine. Z score L1-L4 = -3.5 and T score -1.7. I am currently on 5mg as per recent posts and am now thinking I must try for 4.5. I have been prescribed vit D3 with calcium in the form of the i Cal D3 which is not unpleasant to take and must now await the results of blood test to test Vit D levels and also osteoporosis activity. I also had a spinal x ray as I have had some pain in the lower back that I put down to lifting my 2 year old grandson when they came to visit over Easter.. In the meantime I wonder what treatment I should opt for. I had AA for 16months at the start of my PMR journey and my GP said it wasn't necessary at 5mg and below. I had no problems with it apart from the faff around taking it. I want to know as much as I can and am leaning towards annual zolendronate infusions. What do you all think ? And any experiences you can share would be gratefully received. shall I go ahead with slow taper now to 4.5.. TIA and sorry for long post..
My first Dexascan: I had my first dexascan... - PMRGCAuk
My first Dexascan
Hi, were you prescribed vit d3/calcium at the start of your PMR journey?
Hi
Have a look at ROS site -see link and they have a phone helpline so suggest you discuss with them-
.. and why must you try for 4.5mg? Depends on how you feel… if you feel okay then give it a whirl, if not, stay where you are a bit longer
Thank you. Yes I have visited the ROS website and have been given lots to read from the osteoporosis clinic. Just feeling that if it's the pred that's contributed then I need to try a bit harder at reducing..All a bit depressing at the moment.....
Yes it can get depressing -but if you took AA for 16 months -some will still be in your system. I took it on higher doses (GCA) for 4 years -and stopped when around 4mg. Fortunately last DEXA good but still recommended to stay on VitD/Calcium-which I have.
What were the recommendations on the accompanying report?
Thank you..they are waiting for the blood / x ray results and will then contact me to discuss report and ongoing plan from there. I was given all the relevant info to mull over and asked to think about what type of medication I might 'like' ! I feel I will have to have something but am not sure what. I'm sure I will feel better about it when all the facts are in and a decision has been made. Think my mum had it alongside her PMR too so not all down to the pred.
No it’s not -and they do look at female line.. one reason why I was on it (and hysterectomy aged 37) .
Once you can discuss you may think infusions are better for you.
Good luck on what you decide.
Thank you. I feel a bit calmer now.I have a GP face to face review on Monday so can also ask questions there. Thanks again DL .I so appreciate all the support here.
I am reading your post this morning and wanted to offer my version to the other valuable ones you have been given. I too had dexa scan readings similar to yours and before a double hip replacement could not walk at all, this resulted in my bones deteroriating faster as we need to walk to build strong bone mass. I had wedge fractures to my back and then had an infusion which is a bisophate and stops the bones losing any more calcium. I then went on a mission to improve the absorption of calcium into my bones. What I then found is that it is not just calcium and Vit D but K2 and magnesium which helps bone formation. I also found out that there are 3 different types of calcium. My last Dexa scan showed that things had improved remarkably. This was taken on my wrist also as you can get false readings with bone spurs if you have osteoarthritis. The time of day we take our meds is also important and if we are coffee drinkers the calcium can just get washed straight through the system if it is taken too early and meds. I am now free of steoids, do lots of walking which helps stave off depression. There is new research on bones happening all the time, probably because we have a population that is ageing.
Thank you so much for your very encouraging reply. It's such a comfort to know you are not alone. I will go for the infusion and just want to get on with it now. Good luck to you on your continued journey to better bone health and thanks again for taking the time to reply.
Are you sure you have the t-score and z-scores the right way round? They don't seem right to me. YOu can have a t-score of -3.5 which signals low bone density but still have a z-score of -1,7 as it is comparing you with others your age.
When you were given the AA, were you not also given calcium and vit D then? They are even more necessary when you are on AA and that may have contributed to the poor result.
But the point of AA is to be able to take the pred without such things happening - if you need 5mg for YOUR PMR you are better to take it but if you can manage with a lower dose, that is what you do.
Thank you for your reply..sorry for late response but have had a family thing this evening..yes..you are right..I have made a mistake and T score is -3.5 and z score is -1.7..so is this not as bad as I was thinking..? and no I was not prescribed d3 and calcium when prescribed AA at the start of my PMR..I wonder what your thoughts are about the choice I have to make about possible ongoing meds to help with this? I have been all over the place about this today and my 'family thing' tonight included a conversation about our mother who my sister remembers going to hospital for IV infusions for her PMR so I guess she had an alendronate of some sort along her PMR journey..interesting and something to mull over..would be glad to hear your thoughts..x
A t-score of -3,5 is pretty low bone density and you are at risk of spinal fractures as a result of a simple fall even if you don;t develop compression fractures just due to the low bone density. It is your decision but even I would consider something for bone density with those scores. However - very remiss of your doctors earlier, Everyone on pred needs at least calcium and vit D (that is all I have ever taken after 4 weeks of AA which I hated) and the vit D in the suplements offered isn't enough at 800 IU per day, I take 4000 IU daily to maintain my blood level and I live in Italy where in theory it is possible to produce vit D from sunshine all year round. Which you take depends on your reaction to AA I suppose. There are positives and negatives to all.
Thank you. Yes I will opt for an infusion I think.Still feeling quite upset about it but have to move on and get the right treatment. I have a gp review on Monday so will discuss it all there. Thank you for your input as always.
Think you need to discuss VitD/Calcium supplement as well. .. and if you go for infusions they are usually 6 or 12 monthly -so not as bad as weekly AA.
Good luck with what you decide
Hi, I have recently had my first treatment with zolendronate. This was painless and I've had no unpleasant after effects. I was on weekly AA for 3 years as I was diagnosed as being osteopaenic and also on a high dose of pred (60mg tapering very slowly to 2mg with several flares) for GCA and PMR. For the last few months I've been having lower back pain and tingling in my right thigh due to a nerve in my back being pinched. An X-ray showed scoliosis of the lower spine starting at L3 plus demineralisation. I'm carrying on with daily ADcal tablets and exercises to keep the spine mobile. Good luck with your journey, and hope this helps
Thank you PastelsinArt. I'm still waiting for the x ray results and hoping that the pain in my back is down to lifting my grandson recently. I wouldn't have done it if I'd known about the osteoporosis. I will def have the infusion and just want to get started now. We're you given specific exercises from your clinic.?
I see a physio privatly who has given me exercises to do which help. She also manipulates the spine when I see her.
Thank you. Something to look in to once I get going with it all.
Hi. I’ve been on the PMR journey since October’21, currently on 6mg pred and Vit D calcium. I have osteoporosis and osteopenia. I had my first zolendronic infusion recently with no ill effects - I pushed my consultant for this rather than weekly tablets; yearly infusion seemed a no brainer. My mum is in her 80’s and has had awful pain with osteoporosis so I’m glad I’ve been diagnosed relatively early.
Thank you Rebsy. I am going to go for the infusion. Just want to get started. I did have a chat with a fellow patient at the ostoe clinic who shared her experience with me which was a considerable improvement following the treatment. So fingers crossed for us too. Good luck with your ongoing journey.
I am in same situation as you. Dexa scan discovered Osteoporosis. Down to 5 mg at the time now almost at 4.5mg. I pondered for quite a while about Bone treatment and opted for Zelondronic acid infusion last November. It was very quick and painless. I don’t tolerate meds very well at all, but thankfully no problem. Hope this helps.
Good luck, keep us posted.
I am just about to have my 3rd and I expect my last infusion next week. I had a blood test yesterday to look at the kidney & liver function etc. I've found it quite painless and straightforward though I was not at all keen beforehand. Dexa scan next year to see how I've progressed. Best wishes
Thank you Pollyanna16. That's good to know. I am not worried about it now. Just keen to get on with it ! I have just ordered some vitamin k2 to go with my d3 and calcium and thanks to all the kind and lovely people on this forum know that I will rise to the challenge and improve the current state of my bone health. Good luck to you and thanks again for taking the time to reply.😁
Forgot to ask in previous post..how frequent are your dexascans ?
the last one I had was 21/2 years ago before my 1st infusion. I think I had one 2 years before that. I understand I won’t have another until next year.
Thank you. It's good to know what to expect. Will keep you posted !
Hi, just thought I’d let you know that 2 weeks after my infusion I was offered a dexa scan. So not next year as I expected. Waiting to hear the results this week as seeing my new GP. I queried it with the dexa scan doctor but she insisted the timing was right,
Thanks for letting me know..It's good that they are 'on it '. I am still waiting for results of back x ray and blood tests that were done after my dexa scan.That was 3 weeks ago! There will be a plan in place then. Am def going for the infusion. Vitamin d and calcium supplements, sardines and prunes in the meantime.! It would be good to know your scan results. Good luck and fingers crossed for an improvement for you.
Hi, I have osteoporosis in L1 and C1. I used have low Vitamin D3 levels. After taking Vitamin D3 and Fish oil the levels have come back up. But as to the back pain, I have started Pilates/stretching exercises to tone and strengthen the muscles. I noticed that the back pain disappeared. You just have to work with an experienced instructor. It helps tremendously.
Thank you sivas. It's so good to know what others have found helpful. I have a PMR review with my GP face to face this morning so have the opportunity to discuss the osteoporosis situation too. I hope his timer isn't on just 10 minutes! I will be looking into an exercise plan as part of the ongoing treatment and am starting with a walk to the surgery instead of taking the car. Thanks again and good luck to you and your continued improvement with your bone health.
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