results of X-rays

[MWZ3]

These are the results of recent X-rays. Up to now, I haven’t had any knowledge of any fractures. I have refused the drugs for osteoporosis as I believe them to be counterproductive and not good drugs. GP asked me about taking the drugs and I said they are bad drugs. She said, “Are they?” which made me wonder if doctors are not even looking into the drugs that they are prescribing. I also told her what our osteopath said which was that they are not good drugs and don’t help as they only stop the disease progressing. New bone needs to grow as that happens your whole life. My GP was again surprised and sounding like she knew nothing about the drugs.

So, I am now faced with revisiting my beliefs about taking or not taking the drugs for osteoporosis.

my tscores are around -4 especially in the back.

Thoughts, everyone?

[Met00]

Bisphosphonate drugs reduce fracture risk but don't guarantee to prevent fractures. There's no evidence that taking them for more than 3 years prevents any fractures compared to stopping after 3 years. This is well-explained in this NICE guide: nice.org.uk/guidance/ta464/...

[MWZ3 in reply to Met00]

Thanks for responding. Did you read the report? Have you had X-rays on your back?

[Met00 in reply to MWZ3]

I read your report, which says you've fractured and you also mentioned poor t-scores. Only you can make a decision about bone meds, which may reduce your fracture risk for 3 years (as per the NICE link I posted), but don't guarantee to prevent further fractures. I haven't had an x-ray on my spine in recent years, but there's nothing to suggest I need one. I'm refusing bone meds, but might reconsider if I fractured.

[MWZ3 in reply to Met00]

Yes I understand you. How bad are your tscores?

Another thought, could the other issues help cause a fracture, not just osteoporosis?

Some comments on here have noted that 30% bone loss shows up on the X-ray, I might enquire about that.

Thanks again!

[Met00 in reply to MWZ3]

My scores aren't bad: at my last scan, my spine had improved to -2.3, neck of femur worsened slightly to -2.8. Those were the results of my second REMS scan. My last DEXA scan (over 4 years ago) gave -3.6 for my spine and -2.5 for my total hip, but it seems an error was made with the spine measurement!

Sorry, I don't know whether your other issues would be a contributory factor. You could talk to the specialist ROS helpline nurses about that: theros.org.uk/. I see you're in Australia, but you could email them. There's also a Bone Clinic in Australia, theboneclinic.com.au/, which focusses on exercise.

[4bones2468 in reply to Met00]

I use to attend The Bone Clinic before moving interstate. The program focuses on weight baring exercise and balance. Their research is providing important evidence that exercise can equal and better medication.

[MWZ3 in reply to 4bones2468]

I can’t do much unfortunately. I’ll do what I can though. Thanks for responding as all the responses help me to move forward.

[strongmouse in reply to MWZ3]

I have osteoporosis and have had three infusions. One a year, because I couldn't tolerate alendronic acid orally. My mother had bad osteoporosis and I want to do all I can to help myself. I belong to Strong Bones group on Facebook, but can't do the exercises many do. I have mobility problems and ME. However there are exercises on their which help for instance, simple heel drops, posture strenghtening exercises, balance one to prevent falls, so I do what I can. Even simple foot exercises sitting or lying down can help. Any weight bearing exercise, such as walking up stairs, helps bone regeneration as I understand it. I take calcium and vitamin D daily. My last DEXA shown a mixed result with some improvement and some worsening!

I have a squashed lumbar disc which causes back, hip and nerve pain, but mainly controlled with medication. Like others find standing, cooking and ironing etc difficult but I'm fortunate to have some help. The link to the NICE paper above showed what they know, but there are areas where more research is needed.

I hope you can talk to a Rheumatologist about your results and what they mean for you. My mum walked daily and I am sure that kept her mobile until a fall and hip fracture caused her major problems in her late 80s. She had anklyosing spondylitis and arthritis since childhood and became registered blind, but lived independently until her fall. It helps to find even small things you can do to keep active. Specialist physiotherapy may be able to help muscles around the bones to be stronger which can help overall. There may be no magic bullet, but small things can all add up. All the best.

[Hidden]

You could ring the Specialist nurses on the free helpline at the Royal Osteoporosis Society, as they will be able to explain the drugs treatments and give you information about bone health. 0808 800 0035

[MWZ3 in reply to Hidden]

I’m in Australia. Have you had any X-rays? I was hoping for comments on the report from the X-rays. I have avoided the drugs so far and doubt I’m tempted yet. But I have to revisit based on the above report.

[Met00 in reply to MWZ3]

The x-ray shows a compression fracture as well as other, non-osteoporosis related issues. Once you've had a compression fracture, your risk of fracturing again is likely to be much higher than it would have been without a fracture.

[MWZ3 in reply to Met00]

Thanks for your response. I’m pretty upset with the fracture as I wasn’t expecting that. I have mobility issues with the rest anyway. Some could make me unable to walk at all if they progress.

Where do I go from here? Is there a new drug to treat osteoporosis that is totally different from the present ones? Some of us have waited many years.

[Met00 in reply to MWZ3]

The most recent one is Romosozumab, but I think it's similar to Denosumab and has to be followed by another osteo medication afterwards. It's only available to people with severe osteoporosis and is for one year by, I think, self-administered weekly injection. There are others that build bone rather than holding on to old bone, but they're only prescribed to a minority of people: raloxifene and teriparatide. Also, a growing number of people are having HRT treatment as an alternative, which is now considered safe, and I've heard of people starting it even into their 70s. Dr Newson is an advocate and runs a clinic: newsonhealth.co.uk/. You can find out about them all on the ROS website: theros.org.uk/information-a...

[HeronNS in reply to MWZ3]

Given the track record of the recent "completely different" osteoporosis drugs I would definitely advise against taking any bright new drug which might appear on the horizon! The bisphosphonates may not have a great track record either but at least we know what the likely side effects may be and how to deal with them. We know taking them indefinitely, as used to be the case, is counterproductive. It is great that you are well-informed.

[MWZ3 in reply to HeronNS]

I can’t take them anyway. You have to be upright for up to an hour which I can’t do. Also, I’m on Pariet which is for the oesophageas wherein I have an issue with the ring at the top of the stomach that opens and closes but in my case isn’t very obliging.

I have scoliosis which has gotten quite serious and that prevents a correct tscore result so who knows what my real tscores are.

I think I have very few choices sadly.

[Greekolives in reply to MWZ3]

I recently had x-rays of my spine, and the radiologist said I had had a compression fracture at some point. The good news is that I am almost done with my 2nd year of forteo, (teraperitide) and that the x-rays show I no longer have severe osteoporosis, but now have osteopenia. This is great news for me! Forteo builds new bone, but after the 2nd completed year of daily injections, I will need to use a different osteoporosis medicine to maintain the bone that was built. When, I had these x-rays, recently, the radiologist never knew I had had severe osteoporosis. This radiologist didn't know my medical history. In two weeks I will be having a dexa scan, and I am very encouraged there will be definite improvement in my T-scores. Since I live in the States, even with insurance, I couldn't afford Forteo. Thankfully, I qualified for the Lilly Cares Program which has been supplying the Forteo to me at no cost. I had to do something medically because I wasn't able to improve my T-Scores with natural means no matter what I tried, and I just kept getting worse and worse. I finally accepted the fact that I had to do something as I want to spend time with my children and 6 grandchildren. I didn't want to break another bone like I did with my wrist.

[MWZ3 in reply to Greekolives]

What were your tscores at their worst?

[Greekolives in reply to MWZ3]

-4 was my worst in my spine. My hips were not as bad, but still showing osteoporosis.

[Hidden]

There is a webinar on the website where the drugs are discussed that might be useful for you. Sorry I had not realised you were in Auz!

theros.org.uk/information-a...

Scroll down to May just near the bottom of this page.

[MWZ3 in reply to Hidden]

That’s okay. I’m just trying to come to terms with the report at the moment.

[t1gernidster]

was it pointed put to you that with scoliosis your DEXA readings for the spine will never be accurate? I wasn’t made aware of this until I went for a REMS scan.

[MWZ3 in reply to t1gernidster]

Thanks for that. Good to know.

[walk21]

I have been taking strontium ranelate for years. It is a powder to be mixed with water and drunk every evening, which is a bit inconvenient. It claims to help new bone grow as well as preventing loss of old bone. It is not often prescribed and there are warnings about possible heart and circulation problems, but it is an effective medicine

[MWZ3 in reply to walk21]

Thanks for that. I’ll look into strontium. They haven’t bothered to make proper safe drugs for osteoporosis sadly.

[walk21 in reply to MWZ3]

I think it is a bit unfair to say they have not bothered. I think it is just too difficult We have to take what is available and trust our researchers

[MWZ3 in reply to walk21]

Well, there are new medicines for other things but nothing ever happens that solves the dilemma of osteoporosis like building new bone whilst holding the disease at bay. I’ve waited years for something that I can trust and use. I’m running out of time. Even my osteo says there are no good drugs for osteoporosis or ones she would recommend or trust.

[walk21 in reply to MWZ3]

So sad for you that you are feeling let down. I send sympathy and very best wishes

[Nuthatch in reply to MWZ3]

I tend to agree. There’s no money for osteoporosis research and I’m pretty sure that’s because it’s seen as being mostly a disease of older women. The medical and clinical world are increasingly shown to ignore or discount how women are affected by a whole range of conditions. Just look at the stats for heart attacks in women - significantly less likely to be recognised as a heart attack and prompt treatment much less likely to be offered. Makes me very cross.

[Mavary]

To be honest your bone score is not good at all. My bone score started off at -5.5. I have seven spinal fractures that have made me disabled. I can’t carry things in front of me I can’t clean the apartment and I can’t now do my ironing. I can’t walk too far. I can walk around the apartment and I could go for a short walk but I can’t walk far. I thought I was clever and walked around an M&S store. I bought a pair of trousers which I had to carry out to my scooter. I will never do that again as I was in so much pain. I was on Terraparatide to start with I’m now on Denosumab. My spinal score is now -4.6 so it has improved despite still being at risk of more fractures. When my T12 went I couldn’t walk at all and was in hospital for twelve days. I came home and could barely lift a kettle. I look after my self so you can imagine the struggle I’ve had. Yes bone meds can have detrimental effects but have you ever looked into the proportion of people who get them. Ive taken my chances with bone meds because I had no alternative and it’s paying off. . If it can help me I had to take the chance. I didn’t have an alternative. If I wasn’t on bone meds it would be like Russian roulette. When would the next bone go.

If I were you are worried about taking bone meds I would speak to the Osteoporosis Society. They are trained to know all about these drugs and the effects on people. Please don’t leave it to chance. Speak to someone.

[MWZ3 in reply to Mavary]

Thanks for all that. I’m so sorry for your pain and disability. I’m already disabled from all the other stuff with my back. I can’t even stand in one spot to cook. I can’t walk far. The scoliosis means my tscores are not reliable apparently. I know I have to consider the drugs but that’s scary too. Hugs for your pain, poor lady going through all that by yourself.

[Mavary in reply to MWZ3]

Thank you! I think it’s made me stronger because I have to cope.

[HeronNS]

I'm not coming in here with any opinion on whether or not you should take a bisphosphonate for two or three years. others have given you info on that. However I'm concerned that you may not have been doing everything that you can to improve both your actual bone density and to lower chances of fracture. I wrote up a story which outlines what I did to avoid having to take OP meds, but I did not have osteoporosis (although drugs were recommended to me at the time). I believe what I did, and continue to do, has helped my bones stay strong, and there's no reason why they, or similar, activities and nutrition/diet can't be done by people whether or not they also need to take medication. I link below. Of course if you have known fractures that has to be taken into account. - e.g. walking poles can be very helpful for maintaining an upright posture.

Also, has your doctor checked you for "secondary causes of osteoporosis" also linked below.

Strontium ranelate is a manufactured form of strontium developed, as far as one can tell, simply so strontium could be patented and therefore cost money. The naturally occurring form is strontium citrate. However: americanbonehealth.org/medi...

healthunlocked.com/pmrgcauk...

osteoporosis.ca/medical-con...

[MWZ3 in reply to HeronNS]

Thanks for that. All the other stuff with the back stuffed up doing al I could to help lower my tscores. That went out the window a while ago. I can’t stand in one spot at all and I can’t walk far. I do what I can which isn’t much. The pandemic, which is ongoing contrary to widely held belief or hope, has prevented me from doing pool exercises sadly where I could manage some that helped like resistance. I’m scared I’ll be in a really bad state if I keep having fractures.

[MWZ3]

I’m in a quandary. I don’t like the drugs but I have a fracture at the point where my tscore was -5 eight months ago. You can click on my name and see results from that time in a previous post. With scoliosis results are in doubt. I have other stuff that causes me issues apart my osteoporosis. Which of the drugs has least issues? I have GERD which influences biphosphonates. I’m on Pariet for that. Also, standing for 30 minutes or sitting on a straight chair for that time is not doable. I really don’t know what to do.

[strongmouse in reply to MWZ3]

Yes I too have GERD / GORD, pluas hiatus hernia and take omeprozole for it. I tried the oral medication which unsuprisingly gave me bad side effects, hence being given the yearly infusion instead. Other than feeling a bit off it for 24 hours (they advise drinking plenty of water) I had no sside effects from it. You could ask them if they could give if to you in a chair which tilts with a foot rest or possibly even lying down?