Had DEXA today and not good news (knew it wouldn’t be with 5 compression fractures already. Fracture risk with no treatment at least 24% over next 10 years. Consultant gave me choice of:
Alendronate weekly but feels it’s not a good option as I already need a PPI just to take Naproxen
Denosumab (Prolia) 6 monthly. Have read all the horror stories so would be good to hear anything positive. But also found it’s made using Chinese hamster ovary cells which as an ethical vegetarian I find appalling.
Zoledronic acid yearly which seems to have highest risk of ONJ and a lot of side effects plus risk of fracture when coming off it.
Teriparatide daily injection which can only be used for a maximum of 2 years and is expensive. He thought maybe better as a future treatment following something else. If it’s that expensive I doubt NHS will continue to fund it in the future. Can’t find much info re side effects.
Do nothing and live with the risk of more fractures and an increase in disability and disfigurement.
I have no idea how I can come to a decision! Talk about a rock and a hard place.
Any comments welcome. My T scores (which consultant said are insignificant compared to fracture risk) are -3.6 spine and -3.1 hip.
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That's a tricky decision but we might all be faced with it in time. Do you know what is upsetting your stomach with the naproxen? Have you got a hiatus hernia or is it just the medicine?
Just been reading up on magnesium. If we are taking calcium supplements we need to also make sure our magnesium intake is increased.
Have you already experienced any fractures?
If not you could consider telling the doctors you want to consider your options for a little longer and immediately begin a thorough regimen of the "natural" treatment. This would include instruction from an experienced physiotherapist on how to protect your spine, exercises and a number of supplements, including the aforementioned magnesium, but also Vitamin K2 and a few other things.
Have you been evaluated for secondary causes of osteoporosis before the recommendation to take medication?
Thanks for that - unfortunately I have at least 5 compression fractures already. I’m happy to look at alternative approaches, supplements etc but as an adjunct to medication because I have a high risk of further fractures.
Denosumab is apparently made using Chinese hamster ovary cells which as an ethical vegetarian is enough to make me almost definitely rule it out. There are people who take it without suffering too badly from side effects.
They’re checking bloods for various things but the consultant’s opinion is that I was “always destined to have OP” tho he couldn’t be bothered to explain why. There’s no family history.
I’m in no rush to decide just now but I will need to at some point.
Yes, that's why I asked if you had fractures. It is an awful position to be in. If you feel Prolia is the best choice, then you may have to stay on it indefinitely as the oral bisphosphonates already look like they aren't for you.
One of the things I've learned is that the electrolytes (like salt and magnesium) are also involved in maintaining normal blood pressure. If you are able to avoid the increased blood pressure and therefore that medicine that would be good, wouldn't it? Sadly the doctors don't seem to be aware of any way to treat our illnesses other than through drugs.
I became a vegetarian mainly through concern for animal welfare so using medication which exploits an animal and I can only assume involves killing them doesn’t fit with my principles. I am very aware that the dairy industry is appalling and keep thinking I should become vegan but I don’t think I’m up to that challenge rn. I don’t eat a lot of dairy as it is.
One of the reasons I’m so shocked by this is that I was pretty fit - not an athlete but did plenty of walking including high fells in the Lakes, gardening and I play sax which is good for lung capacity and breathing. I have good muscle strength in my legs still, I can easily squat and stand from that. I can’t do that hip hinge thing as it gives me more pain where the lumbar fractures are.
I’m still walking up to 3k a day (have a dog) but I’m quite scared of further fractures just now.
I think seeing the specialist physio will be positive and give me back a bit of control, not sure how long I’ll have to wait.
I have a lot of pain and the consultant just said GP has to deal with that but they are being very over cautious!
And I still work 3 days a week which means driving and sitting at a desk and of course this isn’t a visible condition so I have to be careful about people bumping into me or tutting if I use the disabled loo.
Thanks for the response. I wasn’t offered it and the consultant (who is the only one round here and supposedly top of the tree, certainly thinks he is) was very clear that those are the only choices I’ll be offered.
He didn’t take kindly to any of his advice being questioned. Fair to say we didn’t take to each other!
I've been on a PPI for years. Started Alendronic Acid in November. I've not had any problems.
Thank you - that’s good to know. I’m not sure why he more or less dismissed it as a viable option (I can still choose it if I want but via the GP).
He was so dismissive of my concerns that I didn’t even get an answer when I asked if I could try alendronate and move on to one of the others if I couldn’t tolerate it.
It’s really disappointing because I’ve always had very good experience from hospitals in Newcastle and we’re a regional centre for osteoporosis so I can’t even get a second opinion!
AA seems to be the first drug that most people are offered then others are considered if they can't tolerate it. It seems to get really bad press - I don't know why!
I am in the same situation. After a vertebral fracture last year, I have to decide whether to take medication, I was told I have a 1 in 3 chance of future fractures. I am not comfortable with the medication options as I too have gastro issues and react to medications. I am currently following a regime of walking, physiotherapy exercises for muscle/spine strength and supplements and diet (I'm vegetarian too.) I have always had problems with absorption of food so mostly take oral sprays. It could be why you have osteoporosis too, gastro issues when taking certain medicines is a classic sign.
I am considering raloxifene. I looked into strontium ranelate and a consultant said I could take it but I'm not happy because of the risks.
We really are between a rock and a hard place aren't we?
Thanks for the reply. I’ve very much been given the impression that choosing not to take medication is not a genuine option. He did say I could and they would just “see me in 3 years”. And presumably I can just put up with any consequences in the meantime..
I can't remember if you replied to this earlier in the thread, if you did, forgive me.Did this "top of the tree" rheumatologist have you tested for secondary causes of osteoporosis, because it seemslike your lifestyle should have protected you, unless there was an underlying condition like the not really that uncommon issue with the parathyroid glands (hyperparathyroidism?) which causes the bones to constantly release calcium. And once treated the bone thinning reverses itself.
Have you considered strontium ranelate, if you do not have high blood pressure problems? I asked to be put on this drug and I had no side effects. It was unfortunately withdrawn but is back on the market again. Consultants appear to be reluctant to prescribe it now for whatever reason(s). It was the only drug that I considered to take. I could not tolerate AA or Risedronate.
Are you able to ask for a second opinion? One is entitled to a second opinion. Unfortunately it would appear you are not getting anywhere with this consultant or his side kicks.
You might find this interesting about the ethics around prolia production which found on google.
Chinese hamster ovary cells (CHO) are an important tool for the production of a lot of biochemical compounds since many years. These cell lines have been isolated once (1957) from the hamster ovary and were subsequently continuously cultivated and spread in flasks (which means – for all animal-rights activists – that most of the labs that work with CHO cells have never hosted and seen a real hamster!). The advantage of using CHO cell lines is the similarity to the human cell system, meaning that therapeutics produced in CHO cells are very similar to those produced in human cells, and thus accepted by the human system.
We all react differently but I have been on prolia for 6 years without serious side effects. This was before the black box warnings, so probably on it for life now.
Ironically, and stupidly because it’s the third time now that I’ve done this, I stood up yesterday evening on a foot that had gone to sleep and turned my ankle really badly. Luckily in the living room so just sort of folded onto the carpet, don’t think I’ve damaged my back further but ankle is swollen and starting to bruise.
Before all this I would just have done the RICE thing but now wondering if I should get in x rayed..
My balance is generally fine - can walk the dog on the beach, just have to be careful not to step into any of the surprisingly large holes (she’s a little dog) she digs!
Hi, Where are your fractures and how did they happen?
I have 4 in the spine and possibly another in the spine from years ago.
Mine all occured without trauma.
I am now disabled and in a wheelchair for most of the time.
(I do also have other problems in the spine and combined with the fractures does not make for a very comfortable life.
I have had many of the different treatments for Osteoporosis and as with many medications have difficulty tolerating them.
What I can say is that if I was put on a treatment that gave me little side effects of which did not effect my quality of life any further.
Then I would definitely without question stay on it for as long as would be advised.
Fractures are excrutiating painfull when they occur and leave behind so many changes in the body and mind .
My last fracture has had the biggest impact on my life and I often wonder if treatment had been tolerated better could they have been avoided.
BIG question that I will never have an answer for.
Forsteo was given to me for 2 years.
At the time there was a Criteria you had to fit into to have the treatment the UK.
Things seem to have changed now and it seems it's even more difficult to be given it.
Whilst on it I had nausea and bone pain with muscle pain for the whole of the time I was on it but I stuck it out.
Prolia if tolerated seems to give excellent results, I did not tolerate this at all well so only had one injection last year.
With Ibandronate( which is not given so often now) I had some serious side effects.
Yet after a total of 3 fractures I had another attempt at it albeit unsuccessfully.
Currently I am off treatment whilst having some medical tests .
I have now been offered Aldronate by infusion.
This of course still being a Bisphosphonate but different to Ibandronate.
I am hoping this will be the one I can tolerate without too many side effects.
The message here is to try the treatments offered, we have no other choice if our bones are at high risk of more fractures.
With Prolia if you only have the one injection and you do not tolerate it then it can be stopped.
I think the secret with all the treatments is if one is stopped then follow straight on with something different this will prevent a rapid decrease in bone loss and or rebound fractures.
We do not hear of all the people on this forum who successfully tolerate these treatments.
After all they are fine not suffering in anyway and carrying on with normal living, so why should they??
The decisions are hard ones made so much harder by the negative reviws of the medications.
When trying a new medication or treatment I try to think of the list of side effects that come with something like Paracetomol ect.
Good luck and I hope you find somthing to suit you.
I’m sorry to hear about your difficulties, it must be hard dealing with lots of conditions. I do take your point that people don’t tend to report positive outcomes - I get that in my job as a welfare rights adviser, no-one sees us to say what a great experience their PIP assessment was!
Also agree that I could try any of them and stop if the side effects are intolerable. I have 2 worries about that. 1) I have no confidence in the consultant either believing I can’t tolerate side effects or moving me quickly onto another drug 2) if I try Prolia and have severe side effects to the extent I cannot work I lose my job. Which I cannot afford to do. And it is active for 6 months!
I tried to ask the consultant about the need to go straight on to another medication if have to stop Prolia and he completely pooh poohed it, even made out he didn’t know what I was talking about.
I'm sorry to hear that you do not have a very supportive consultant.
That makes everything so much more diffcult.
I had severe side effects with ibandronate and yes intially was told by the Consultant that the treatment was not the cause.
After many investigations which included some painful biopsies it was decided to take me off it.
I had ended up seeing 3 different consultants for different problems.
The problems I were having ceased on stopping the treatment and returned when it was attempted a second time.
I like yourself do not want to try a different treatment for fear of side effects but when the Consultant asks you how are you going to feel if your whole back goes it does not leave us any other option to keep trying the different ones available.
I so wish I were able to have something that did not cause me so many more problems than I already have.
I really do think you should try to speak to your consultant again or maybe your gp.
It is so surprising that he would not know the risks of Prolia if not followed on with another treatment.
I have always found the ROS nurses helpful and sympathetic, they have much knowledge on the treatments and effects the fractures have on the body.
It would be worth giving them a call.
There are other treatments that may be available through your GP.
The latter I am not sure about because I have always been treated and attended the hospital.
I have to say in all fairness they are only trying to do what they have been trained to do and that is to save our bones.
I've been treated for 16 years now though still had 4 possibly 5 fractures and last year was told by an orthopaedic consultant he could not help me as my bones were full of holes.
I actually lost bone from the hips when on Forsteo!!
My t scores were similar to yours. I used natural methods - diet, exercise, supplements and had massive improvement. No fractures in my spine, but did have sacral insufficiency fractures during cancer treatment. At last dexa was told to continue the natural route- no drugs. Never taken op drugs.
Of course, would never advise anyone not to take drugs. We all must decide what’s best for us.
Hello Justme , Interested in you saying you used natural methods and exercise . My sister who is 52 has just been diagnosed with Os in spine , I have osteopenia in hips and spine at 60 . She and indeed I am horrified at the drugs that we may have to take , she’s looking at synthetic progesterone is it Wellsprings ? Would be very grateful for some advice on your protocol with os over the years . Best
Don’t know how to post a link but if you look under previous posts under my profile name, titled ‘Amazing results, no drugs’, my regime is located there. Of course, we are all different, and we just have to use our own judgement on what to do/take for OP.
It is awful that your consultant is not up to date with the facts about Prolia/Denosumab. Members in this community appear to be more knowledgeable than he is.
Denosumab is generally prescribed long term, so you need to be happy it is the right option for you.
To get the full benefits, denosumab should be taken regularly as instructed by your doctor or pharmacist.
There’s no formal guidance on how long you should continue to take denosumab. In some cases it can be prescribed for a decade or even longer. It’s a good idea for you to review your treatment with your doctor, every so often, to check it’s still the best option for you.
Ending your treatment
The effects of denosumab wear off quickly, as little as six months after the last injection.
Usually, another medication is prescribed for at least a year after you come off denosumab, to help keep your bones strong.
If your risk of breaking a bone is considered low, you might be advised to stop taking denosumab without a follow-on treatment. In this case, you should be referred to a specialist to discuss further assessment and monitoring.
It is your life, body and health and you should feel confident you can discuss this with a medic who listens and is knowledgeable about OP. The medic you are seeing appears not to be that person. Hopefully your GP can help you more if you are unable to get a second opinion.
Yes I can’t believe he’s not in fact entirely up to date as he heads up the metabolic bone clinic! He was annoyed because I wanted to ask questions and he thought I was questioning the validity of his information. He didn’t listen to me, just accused me of being negative, laid out the 4 options he’s willing to offer and ended the “consultation”. I wasn’t given an opportunity to ask for more information about any of them.
I’m really quite upset at the prospect of ever having to meet him again but I won’t have a choice unless I move!
I’ll try the ROS when I’ve calmed down a bit. I need to get some dental treatment done anyway so I’ll delay making a decision till after that.
Good news is I didn’t break anything when I went over on my ankle yesterday evening 😊
Well that is indeed good news that you did not break anything when you went over on your ankle.
I can really understand your feelings about ever wanting to meet this consultant again. Some consultants really do think they are above everyone else and that is so wrong. What you need is something in writing to take to show him that he is clearly not up-to-date with this particular drug.
Have you anyone who can accompany you at your next appointment with this man, for morale support and hopefully they can intervene. should he again become impatient with your questions/reasoning/what you have read about prolia and so on?
You could always write him a letter before your next meeting with him if there is to be one. Use bullet points and clearly set out what you have learned through research on prolia from reliable sources . Knowledge is power. If he will not listen to you, put it in writing. Send it Royal Mail signed for.
Nuthatch, I was concerned to read your problems , more so because you appear to be in 'my neck of the woods ' so to speak . Last year I was referred to a rheumatologist who I was told was the only consultant in a large area . To say he was lacking is a total understatment. Would you please PM me with some details as I had no idea of what was on offer in the Northeast . Thank you Pp
Thank you sunseaandsand for you excellent response. I’m currently researching all options having just been diagnosed with osteoporosis ( I’ll post a new thread about that later) but just wanted to say thank you 😊
I have had 6 treatments of Prolia have had very little side effects apart from discomfort on bottom half of legs but that is only at night. I have sustained vertebrae fractures the pain was awful particularly when my back went into spasumm. I think you are the only one that can make the dicision as to if you have Prolia I have read the different opinions of people who have had the six monthly injections some positive some not I think the best thing to do is discuss it with your consultant.
Unfortunately as I’ve said in other posts my consultant doesn’t do discussion. There are 2 specialist nurses at the clinic; I’ve spoken to one and sadly they seem to follow his lead - she could not have been less interested in my query.
The ROS is also very gung-ho about medication and side effects so I’m not sure I want to speak to them.
I might try my GP. They may not have the specialist knowledge but they can look stuff up and at least acknowledge that I am an active, professional and competent human being.
Replying to myself (!) to report that I misjudged the ROS. The nurse I spoke to was extremely helpful and pointed me towards lots of information and comparative studies for the various drug options. Now I need a spreadsheet! Typical that Excel is the only bit of Office I’ve never got my head around..
I was a little surprised at your negative comment as I have only heard good reports from those that have called the helpline. Pleased to hear that you found the nurse helpful. It really is a brilliant free telephone service for those with OP.
Hi, I am in the same situation s you after having DEXA scan last week. i don't want to take the meds with the side effects especially as I am 48 and can only take them for 5 years, or a few years with the injection form. I am also a vegetarian. There's also the issue that the meds only really help 50% of people, and even then there is only a 5% improvement in bone increase... that same marginal gain for a lot of stress and side effects. I've heard Soya Isoflavines are good as Asian women have lesser issues with osteo, as they have no dairy but soya milk and products. Along with calcium, magnesium and Vit D supplements, walking and easy lifting excercises, I wonder if the latter natural way is the better option.
Assume so as never told otherwise and I had regular blood tests for years as I have crohns (though it has been in recession for longer than it was ever active), also I’m quite outdoorsy so get what sun is going.
Re getting a second opinion; good suggestion but unfortunately this guy is the sole consultant and heads up the regional centre. So I would have to go out of area and I think that would have to be private which I don’t want to do on principle and can’t afford to do anyway!!
Do you receive copies of all the results of your blood tests? Again, you are entitled to copies of these reports.
I do not know how old you are but as we age, even if we are outdoors a lot in the sunshine, it is not automatic that we are getting enough Vitamin D this way. I am prescribed VitaminD3 by my doctor and my Vitamin D levels are good, both summer and winter. I do not sit or lie in the sunshine as the sun no longer likes me - it makes me feel unwell. I used to be a real sun worshipper in my younger days!
I would get print outs of your historical blood tests or register online for access to them. I would not be in the least surprised if vit D wasn't tested or was low in range.
The consultant ordered a load of blood tests at the clinic yesterday so I guess he’ll be checking those. Forgot to look at what he’d ticked I was so cross with him!
I now always ask fora copy of my results and keep a copy with the lab ranges so I can double check them. NHS acceptable ranges may be a lot lower than an optimal vitamin level would be.
I have an ice pack for my back so that got used straight away! Been x rayed and no fractures and it’s loads better today. Annoyingly the awkward walking and stair climbing due to it has made my back pain worse!
I am on Zolendronic infusions, Just had third (once a year) and will be having a DEXA scan to see if it has helped. My understanding is that ONJ is rare and is usually caused by need for dental treatment or in people with Paget's disease. It is hard but a matter of weighing up the risks and benefits. So far the only side effects were flu like symptoms for a few days afterwards.
I'm also waiting for an MRI for back and hip pain which the specialist physiotherapist thinks is due to issues around L2. (They started before I was put on the zolendronic acid and not related to it).
Having seen my mum suffer from osteoporosis I want to do all I can to avoid it, but other health conditions make exercise difficult. I had an early menopause but took HRT for 10 years. Hope you find a way forward which you feel happy with. We are fortunate that so much more research is going into this debilitating condition.
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