My DEXA scan earlier this month has left me very depressed and anxious. T scores hip -2.9 (neck 3.1), spine -3.9 (L1to L4 -3.2, -3.6, -4, -4.3).
I have been taking bHRT since March this year. I am 74 so am still unsure whether this is safe. I had a mammogram and ultrasound of uterus not long before but there was no check on heart, bloods etc.
I have also used a Marodyne for 18 months. I tried oral bisphosphonates many years ago but stopped because of gastric issues. I take long term steroids for polymyalgia, currently on 7mg, down from 20mg 2 years ago. I also take levothyroxine and in the last year T3 (Liothyronine) for Hashimotos which was undertreated for years.
I am devastated because I have been ill with polymyalgia for 2.5 years, have recently begun to feel much better and am mostly pain free. I now read about the side effect of drugs which can cause muscle aches and pains long term. It would not take much to trigger PMR gain.
Over the years I have reacted badly to many vaccines/drugs which seem to undermine my health further. I do understand that this does not compare with the life changing effects of a fracture but I still feel at a loss. Advice seems to change. My Rheumatologist told me exercise cannot build bone density (I thought the Liftmore programme proved otherwise).
He has advised me to have Denosomab injections but did not discuss what follow on treatment there would be. I understood that the thinking now is for a bonebuilding drug first but my T scores are not under -4 (except individual vertebrae) so was not offered. Am I able to query this based on my high risk of fracture? (I'm also very petite 152 cm and 43kg).
Finally, he did say strontium ranelate used to work well but was not available now. I've heard strontium citrate mentioned as a possibility. Also collagen. Does anyone have experience of using these?
I know I have to bite the bullet now and take some sort of bone drug but I seem to go round in circles. Can anyone offer some advice? Thank you.
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FleetRose
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Oh its certainly a dilemma for you fleetrose. I'm not comfortable with the bisphosphonates either, but I have 7 spinal compression fractures, and daily discomfort. The thought of more terrifies me ,so I am persevering meantime. My two dexa scores were -1.1, and -2.2 for the hip. They couldn't score the spine. Although those scores are ostopaenia, the fractures meant advice was treat as osteoporosis. I can't answer for your particular set of medical conditions. But you don't want my fractures, my shape. My squashed gut, I envy your relative comfort because I have little of it. I hope someone here can tailor advice to help you. You have my every sympathy
Thank for sympathising with my dilemma when your situation is so much worse. Also a timely reminder for me that I have been very lucky so far and do need to do something asap. I do hope you can find ways to make your life as comfortable as possible with help from others here in a similar situation.
Thank you for your suggestion. I don’t do Facebook at the moment but may need to start! It is so helpful to be able to share experiences and knowledge.
Yes I am. It has been a godsend over the last 2.5 years during which I received so little help from the medical profession (except when I paid to go privately).
Perhaps you may benefit greatly by making a call to the nurses on ROS. They are the best to advise you and will put your mind at rest they are exceptional at listening and so very knowledgeable.
I have bad reactions to all medications and treatments,( not just the ones for Osteoporosis)
Dear Fleetrose, any diagnosis of osteoporosis totally throws your mind and am sure everyone would offer sympathy. You probably have an overload of information from here ,media and Dr's.
I can see someone else had already answered with other problems to yours .
I would take a very practical approach to help yourself,think about all the things you still can do and do them,no one can predict the future , I don't like taking drugs but I have taken the chance that the drug I have been offered may stop the deterioration of my bones ,to me that was worth having. I'm on a year of monthly injections followed by yearly infusions.
The drug I'm on is Evenity/ Romosozumab.
It's a very difficult time prior to this ,deciding what action to take,keep going and do get as much advice and help as you can ,my heart went out to you .
I also was offered eventy injection but I have decided not to take them right now. I also read up on the side effects. Have you had any side effects while taking the eventy. My dexta results were -4 in my spine.
Hi I have had no side effects that I can pinpoint. Its scary being given all this info, I was offered it as a spinal fracture put me into severe category, my vertebrae being T2.6, so only just Osteoporosis. And it's only for 12 mths ,so I'm being possitive about it .
Hope you can settle your mind around what's best for you.
Thank you for your thoughts Freshair 24. I do think about the things I love doing (like walking in nature) and that may well decide me to go ahead with the drugs. I do not feel ready to have those pleasures taken away from me. I know I am very lucky to think I can choose at this point, many are not so lucky and sustain spontaneous fractures which then limit their lives irrevocably. I am in the privileged position of believing (maybe erroneously) that I have choice in the matter!
Can I suggest to strongly consider treatment if you can still do the things you love and don't want them taken away from you. I have posted elsewhere about my situation and I would swap instantly with anyone who has not fractured, can stand up straight, walk for more than a few minutes, not have pain and be able to return to my job.
Thank you. It is very difficult. I have returned to my job in a very different capacity. It is physically painful and not what I want to do. However, I am more than a bit stubborn and I will keep going and accept all treatments offered to me regardless of the side effects. The fractures and further disability are much worse. In order to avoid further medical issues, I may have to undergo further, extensive spinal surgery. My view is that we are given a body and a life, and although events beyond our control occur, we have an obligation to ourselves to preserve both as much as possible. This is just my own view.
That is certainly a very positive way of thinking, do everything you possibly can to protect yourself from fractures now don’t leave it till it’s too late.
If one treatment is not suitable then you can always try another. x
Give the ROS nurse Helpline a call, they are the best people to discuss your options with. I have recently started Romosozumab (Romo) after suffering spinal fractures which were probably due to long term steroid use. It is quite new and not widely used yet but was the best option for my particular circumstances and high risk of having more fractures.
Thank you, I did in fact phone the ROS helpline late yesterday. The nurse I spoke to was extremely knowledgeable and helpful and I would certainly recommend anyone in my position to do as you suggested and get in touch with them.
I feel reassured that I can go ahead with at least the first denosumab injection while at the same time emailing my consultant to find out what his exit strategy for me would be as none was discussed. At the moment no other drug has been suggested or offered. Thank you again. I do hope you are able to manage your situation and that there is hope of improvement.
The nurses were so useful to me that I became a member of ROS. Zoledronic infusions were first suggested to me by my wonderful rheumatologoist that I see for PMR and I was ready to go ahead with that but then she consulted with her colleagues and they recommended Romo (Romosozumab) aka Evenity as being even better. But that is probably because I was deemed high risk having already had spinal fractures and on long term steroids. You do need to discuss what the longer term strategy is as you don't take Prolia for ever. Romo/Evenity is relatively new and there haven't been long-term trials but it seems to be helping me with the pain already - it seems to have an analgesic effect - and I just have to trust it is building my bones and it lives up to its promises as no one has a crystal ball. No side effects so far except maybe a tiny bit of weight gain, but that could also be me eating too many comfort foods and carbs now winter is drawing in.
Thank you, the fractures themselves were horrendous enough and life changing, but what's worse is how long it took to get diagnosed as my concerns were dismiised by people who really should have known better including physiotherapists and doctors. This is why I'm on a mission to help others so it doesn't happen to them, and what they can do if it does.
Hello Fleetrose, So sorry about your dilemma. You are not alone! I've also been recommended denosumab, but am very reluctant to take it because of the 'cliff edge' factor when you come off (and I would still be only mid-70s). My rheumatologist said not to worry as they were bound to have found something better to go on to by then! Really?! Alendronates haven't worked in the past and I'm currently on teriparatide, but 2 years is the max on that.I was banking on strontium ranelate after the teriparatide, but my rheumatologist, as you were also told, said it was no longer available. However, one of the nurses on the ROS helpline said they expected it to become available again soon, so I will continue to press for it.
We do need to find out as much as possible as it seems we are not given the full picture and the specialists take the easy option of putting us straight onto denosumab without thinking long-term.
All the best with finding the right treatment for you.
On the positive side two years of Teriparatide will stand you in good stead and should reduce your fracture risk considerably. What a cavalier attitude to say there may be something better by then (re the denosumab)! Unbelievable!
Why not ring for advise from the Royal Osteoporosis Society UK. They have nurses who you can ring and ask any questions you like regarding treatment. Have a look at their website - theros.org.uk/information-a... obviously I have no idea where you are based but there are 2 different phone numbers you can call. Their advise is professional and I know loads of people who have called them for help.
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