REMS scan with Osteoscan update

Treatment journeys & osteoporosis medicines
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As promised i am posting following my appointment with Dr Birch today.

I can truly say it was worth every penny.

The scan and his personal advice tailored to my health, scan results and lifestyle was invaluable and immensely reassuring.

When i received my diagnosis last year i felt my whole world had collapsed. My passion is riding and competing horses and I feared that was over.

I also have a couple of vertebral fractures and I scared myself silly watching some information videos.

Dr Birch cut through all the confusing information and misinformation out there and was able to provide lots of reassurance to me . His data is able to provide information on both bone strength and bone frailty to get a clearer picture of your own fracture risk.

This was the first time since my diagnosis in July last year that I have been able to talk to someone about my particular circumstances and ask questions.

I have already booked for next year a followup appointment, but as others have said he is now only seeing existing patients at his satellite clinics, and new patients book in with his colleague Alison, who uses the same data analysis as him and was trained by him.

I can thoroughly recommend this clinic if you truly want to understand the condition as it impacts you.

I have come away with a lot of information to digest, and a tailored nutrition and excercise programme for me aswell as insights into what I need to ask at my next Osteoporosis clinic concerning my treatment plan going forward.

I feel much more positive now about living with this condition.

I hope this helps.

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Really pleased to hear you were able to feel supported at this appointment. I know you, like me and many others have found support on this lacking. I am seeing Dr Birch in September & will report back my findings here too. Xx

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Thanks for sharing this information, your experience sounds really positive.

Do you have a link to share at all to the clinic?

Thanks :blush:

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https://osteoscanuk.com/about-us/

Hope this works x

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It worked perfectly, thank you :grin:

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Thank you for sharing this …I am looking up this clinic now…have you started any treatment yet…?

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He cant prescribe treatment but can help with guidance on nutrition and excercise, and advice on treatments.

I was already 6 weeks in to Teriparatide and 3 months into HRT. We discussed pros (no cons) of both and he advised what follow on treatments may be beneficial and what to ask in my next /first NHS clinic.

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Thank you for this info..I am starting on Romosozumab injections next Thursday x2 a month for 1| year..they came today…I will book up to see Sarah shes just been in touch with me…

no help with my cns nurse …as such I am researching all of this best I cam…Iam 58 yrs young ,fit healthy like you and active . yoga …walking…qui gong…feels like my world is over …I am struggling with pain looking in to prescribed cannnabis oil now…thank you for your help

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Jess that was me until I saw Dr Birch - he really helped me deal with it mentally- my words were to him that I felt like a huge weight had been lifted! I think she will put your mind at rest and also give you some much needed advice.

They definitely plug the NHS gap!

Good luck x

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Hi, I am also a horse rider and diagnosed with osteoporosis in my spine, not so bad in my hips. I am seriously questioning my diagnosis following a DEXA scan as I am very slightly built. 5’1 and 7 stone 3. The reason I question it is I was violently ejected from a 16.1hh horse 2 days after I got my results ( little monkey did a massive buck and dropped her shoulder) flinging me in the air and I landed flat on my back. Got up and walked away with nothing more than a wet muddy bottom and back. Reading how people get fractures by doing far less really makes me ask, if my spine is that bad how come I had no injury at all?

Interested to know if a REMS scan gives a better picture of bone strength? Obviously my bones aren’t going to be very dense as they are not very big.

I’m 52 for reference. Only had a DEXA scan as put on steroids for PMR.

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Hiya, good to hear from another horse-rider!

Yes yes yes, it gave loads more details about my bone strength and fracture risk, and my score lowered as a result.

I was totally devastated when I received the diagnosis via Dexa scan and thought my world had collapsed.

The ROS nurses were incredibly sympathetic and supportive and reassuring but I still had doubts and fears, especially as I realised I had lost height and xrays showed I had 2 possibly 3 spinal fractures.

My history is I had bad accident involving a horse rearing and landing on me knocking me flying.

I cant remember the impact and fall but my shoulder was very badly dislocated and it was subsequent surgery that led to Osteoporosis suspicion as my bones were soft .

However - my other arm must have actually taken the full force of the actual impact as my forearm was extremely swollen and bruised- enough for paramedics and A&E to suspect a break - but it wasn’t! And that goes against the weak bones as wrists are a comments fracture area - so gave me hope.

I have a mixed lot of indicators as my surgeon says almost certainly my bad shoulder injury (worse than it should be considering the circumstances) was almost certainly due to Osteoporosis but wrist didn’t fracture!

Anyway due to vertebral fractures and surgeons notes I was assessed as high risk and am on good treatment.

My Dexa scores were borderline Osteoporosis in spine and Osteopenia in hips.

But with additional REMS data and his own fragility score I fall down to Osteopenia in both and low fracture risk.

If you want peace of mind or just to be sure, for couple £100 ( let’s face it much less than a vet bill!) Its worth it!

I had absolutely no suspicion about Osteoporosis until my accident and surgery, despite the usual falls over the years!

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Thank you for replying I’ll look into it. Only ever broken 1 bone in 2016 whilst ice skating. High impact and another person fell on me. Even then only a minor break of the knobbly bit in the outside but had ligament damage which took much longer to heel. Have come off my 17.1hh a few times over the last few years with no problems apart from knocking myself out once​:laughing:. Think I may look into a REMS scan, thank you.

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Thank you …again you too wishing you well and strong bones jx

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Hi Horse hugger. I’ve also booked a Rems scan which will be in September with Alison. My DEXA results are not at all bad, normal hips and osteopenia in spine. However, because I sustained a fracture to my sacrum and pubic bones, it was recommended that I take Alendronic Acid. I’ve been taking it for 18 months with virtually no side effects, but I have only ever intended to take it for 2-3 years to give my bone density a "quick boost. " I’m very active, still running at 70 and doing strength training at the gym.

I feel a Rems scan will give me a more complete picture going forward as I don’t want to be fobbed off with the usual, “Go and take this drug for 5 years then we might talk to you again.” :roll_eyes: The only time I’ve received a diagnosis or made any progress is by going down the private route.

It seems that everyone who has a rems is very pleased with the advice.

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Hi Corcho

It gives you a much more comprehensive picture as it looks in much more detail than DEXA, combined with the advice you get.

I really did walk out of there 2 stone lighter! I am not as bad as I feared and I can carry on with the sport I love.

Well done you at 70 - it will be money well spent, it’s just sad we have to spend it. But worth it for peace of mind and the full picture.

Good luck xx

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Ps how did you get a personal picture on there, I could only upload a stock picture!!

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I didn’t upload the pic, it just appeared. Mine would probably be more apt for you. :wink::horse:

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I also had my REMS scan but I saw Alison as Dr Birch isn’t taking on any new patients. It was so good to speak to someone at length as I have had no GP appointment, only a telephone conversation which was less than helpful. I also have scoliosis which means it is difficult to get an accurate DEXA scan. I have had a very thorough written report with lots of suggestions and advice. I have rebooked for next year to monitor my bone health.

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Your consultation sounds amazing. I have tried to book but Nick BIrch but is only seeing existing clients now so offering appointments with Alison Johnson but as she cannot provide clinical advice or diagnosis herself, I’m a little confused about how that works - has anyone taken this route please and if so was it worthwhile? A compression fracture was found by chance in my pre congenital aortic valve replacement MR scan and subsequent Dexa gave a shocking -4.9 spine and -3.8 left femur score which came as a total shock and has stopped me in my tracks not knowing quite what I can and can’t do. I’m a reasonably active and in good shape for 69 but left not knowing what excercise is safe. I was wanting to go back into horse riding and was starting Couch25K but from what I’ve read this is probably unwise so seeing Nick Birch would have been a godsend. With only vague GP advice available and not even a re-call likely to check deterioration or improvement I feel pretty abandoned with it. My dentist has advised against Alendronic Acid so just taking I-vCal D3 prescribed plus additional D3. Dairy causes mucuus reflux so struggling with finding the more natural path I’d like to take. So if anyone has had a productive and positive outcome with Alison Johnson I’d love to hear about it please?

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Zoomie I would really like to talk to you as I have been where you are. Its taken a year but I am in a much better place and it’s largely thanks to this group. But first you can still see Nick Birch if you go to his main clinic rather than a satellite clinic. I know others have done that. It may mean an overnight stay depending where you are but I would say well worth it.

Im not sure what is allowed here but I would be happy to chat with you if you wanted, as a fellow rider.

I felt abandoned at first too, left to just get on with it, I received my diagnosis via a letter to my gp I was ccd into. I couldn’t get anyone to see me or talk to me. But thanks to ROS nurses and some advice here I got xrays done on my back which revealed vertebral fractures and that was the trigger, aswell as not being able to take Alendronic Acid due to side effects, the excellent treatment I am now receiving.

Someone here said you need to advocate for yourself, and that was one of the best bits of advice I received, as no one else will.

I pushed for a back xray and blood tests, and it was due to that, and the anecdotal evidence from my surgeon (shoulder repair) that led to me getting my current treatment and finally getting into the NHS clinic . In the meantime I had arranged the appointment with Dr Birch, and although things had moved on with my treatment via NHS by time I saw him, it was not a waste of money/time, as he helped me understand and prepare for my next appointment.

He also helped put me in touch with someone regarding my shoulder injury too which was a bonus!! If you can get to him then go, but in meantime you need to push for the relevant tests with your gp - they really don’t know enough (mine didn’t) so it was up to me to research and push for the tests I needed.

As a result I am now receiving gold standard treatment and I am still riding, so definitely don’t give up.

Im Sorry this was so long but from someone who was where you are a year ago, I am now in a totally different place and can vouch that there is hope but you need to make it happen.

Good luck and happy to chat if allowed xx