I hope this answers many of the questions raised.

[Armagnac]

I am writing a general response that I think will answer many of the questions raised and also tell my story.

Firstly it is clear that it is still the case that people generally only discover that they have osteoporosis AFTER they break a bone. Personally I think everyone (male and female) should have a DEXA scan at say 60. One day the NHS will realises this is a cheaper option in the long run.

Secondly in the UK it is clear from the posts that the many GP’s are sadly lacking in knowledge of osteoporosis and instead of referring people to a rheumatologist they appear to dole out some pills which in many cases are inadequate.

I am male now 74. In 2019 I fractured three vertebrae. I was in a lot of pain and the last thought I had was that I had fractured my back. I thought it was muscular. I was in France and went to see an osteopath. This obviously did no good. When I was back in the uk I saw a physiotherapist. Obviously the wrong thing. I was still in pain and in fact spent 3 months sleeping on a recline chair as I could not get in and out of bed. I went to to see a back consultant and had an MRI SCAN. This confirmed that I had three fractured vertebrae. At this stage they had not compressed. (At this stage you can have cement injected into the vertebrae to stop them collapsing. By the time the NHS will get round to considering this they will have almost certainly compressed.)

I was referred to a rheumatologist (private). He immediately suggested Teriparatide. This is a self administered injection with a pen once a day for two years. The NHS would not prescribe this. I bit the bullet and paid. (£7,000 in all) This works to produce new bone tissue, thereby increasing bone mass and strength whereas the Bisphosponates slow bone loss. The NHS can now prescribe a new drug called Abaloparatide which is similar to teriparatide. There is an article about this in the Autumn edition of Osteoporosis News.

After that I have had three annual zoledronic acid infusions. This is a Bisphosponates. At the end of the teriparatide my bone density had improved. My back is generally not painful but aches if I stand doing something in the kitchen.

So my advice is pester the GP to refer you to a rheumatologist and they will know the best course of action.

[63Primrose]

Thank you for this useful information which I can discuss with my GP. Newly diagnosed at 61.

[Blondeisbest]

You are so right about dexa scans being done earlier,was diagnosed after spinal fractures, but I think I had os for much longer, have done 5 years on alendronic acid, I am now waiting to start teriparatide, hopefully this will help.

[corcho]

Hi Armagnac. After reading your story a couple of months ago, I went for a private consultation with a rheumatologist to discuss the possibility of Teriparitide. In short (after a blood test to check my parathyroid) it looks as if I can have this on a private prescription as I wouldn't qualify on NHS. My DXA isn't too bad but I want to follow the prevention route. I have lots of questions if you don't mind ? I believe that the prefilled pens don't come with needles, so that is an added extra? Do you just take these private prescriptions to the pharmacy as normal and pay each month? My usual pharmacy is on-line. (I'm researching the best 'deal' at the moment as chemists do vary on price) and finally, did you see a nurse to walk you through the self-injecting? Thanks in advance for any advice you can offer.

[Armagnac in reply to corcho]

Hi

Pleased to hear you got to see a rheumatologist. I thought NHS could prescribe teriparatide now but I know criteria can be very picky. A similar new drug is Abaloparatide.

My rheumatologist did a prescription to Lloyd’s Pharmacy Home care. They delivered the pen, needles and a pot fir used needles. They also sent a nurse to take me through the process. Overall I wasn’t impressed with Lloyd’s. Teripartide is very expensive and there was no chance as a male of me getting it on the NHS. Women have a better chance. As I recall it cost me about £270 a month. I’m surprised the rheumatologist cannot organise this for you.

Good luck and happy to try and answer any questions.

[corcho in reply to Armagnac]

Many thanks for your speedy response. I have my second consultation with the rheumatologist on Monday, so I hope he'll know about all the things you've mentioned.

I don't qualify for Teriparitide on the NHS as I'm not considered to be at sufficiently high risk, despite suffering some 'hairline' fractures last year after a hard fall. My DXA results are not bad at all, but the rheumatologist said they don't tell the whole story and I have obviously have some insufficiency.

After seeing my late mum suffer from OP, I intend to do everything possible to prevent this from progressing too much. I usually enjoy running and hope to get back to it, even if I have to reduce the distance. Meanwhile, I've joined the gym to build up strength.

I believe that Lloyds pharmacy has gone bust. So far Boots have given me the best quote, but to be honest I haven't asked that many yet.

Thanks again for your advice...Knowing me, I'll probably have more questions along the way!

[Armagnac]

NHS strikes again! I think Lloyd’s changed their name lloydsclinical.com new owners.