My husband has been diagnosed with osteoporosis and osteopenia in the spine. Using his medical insurance he has consulted a leading consultant in the field. The consultant would like to prescribe Romosozumab. He says this is licensed for men, though not commissioned by the NHS for them, because the rarity of men with osteoporosis means insufficient research has been carried out on men for its efficacy in males to be known. The consultant can legally prescribe it off licence/off commission if we are willing to pay for it for a year - which we are. (We would have to carry the cost ourselves because the insurance won't) We do agree with the consultant that this is likely to be a good solution.
It requires monthly injections and neither the consultant (much to his frustration) nor we have been able to find a pharmacy in the London area who will dispense the drug and undertake the injection. Given the cost of each injection, and because in fact each dose takes two injections my husband and I are reluctant to undertake the injections ourselves.
Does anyone have any idea about how to find someone who might dispense the drug and inject it into a man? Or does anyone know of a clinical trial that might be using the drug on men?
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twinhmgs
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Alas not. We asked and the in-house pharmacist, the nurse and the GP at our practice took a while to think about it, but because the drug is not NHS commissioned for men they said they couldn't, even on a private basis.
This is a relatively new treatment for osteoporosis. Last time I looked there was a black box warning as it must not be used by anyone with any cardiac risks. It would be interesting to know exactly what his numbers are: T-score, Z-score if he is of older age, which compares patient's score with others of similar age, as there is a level of bone thinning which is normal with age. Also if he was tested for "secondary causes of osteoporosis".
Appropriate weight-bearing exercise and nutrition, including a few judicious supplements, can improve bone density without the use of medications, although it does depend on his actual condition, whether he's already sustained a fragility fracture for example. I see from your profile that he does have a fractured vertebra. Teriparatide is a medication which is good for bone OP, although usually not offered until after other meds have been tried, and it must also be followed by another drug after the permitted two years are up, usually a bisphosphonate, to maintain the bone gained.
Unless your husband's situation is so dire that he must take whatever med offered as soon as possible, he should take his time. Bones do change slowly, so a treatment of a diagnosis of low bone mass is not as urgent as, say a heart attack, or an infection. If there is time, it is probably not a good idea to opt for the latest, poorly tested in his demographic, medication when there are other treatments available.
Even if he decides to take medication it is also a good idea to do the so-called natural things as the only side effect from them is going to be improved general health.
These are the side effects listed by the manufacturer:
You should know that Evenity is brought to us by the same company which provides Prolia, which if discontinued without immediate introduction of another bone medication can lead to rebound osteoporosis. After Evenity is discontinued the bone mass gained through it will also decline. I don't know if we know yet whether the effects after discontinuing are potentially as dire as they often can be from Prolia.
you really, really don’t need anyone to inject your husband with Evenity. It’s absolutely simple to do it himself. I do! When it’s prescribed you will be offered a video consultation with a nurse who will show him how to do it. But honestly, you could just follow the written instructions. Side effects of a serious nature are rare, so don’t get too scared.
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A loved one receiving a diagnosis can lead to lots of worry and confusion as to the next steps, so it is great to see so much discussion and support happening on this thread. We just wanted to pop in to let you know that we have lots of information on our website that you might find helpful.
I’m in the USA and have been getting Romosozumab injections for 11 months now. I get 2 injections, 1 in each arm monthly and it’s administered by the nurse at my Endocrinologist office.
I will have my last injection in August and then get a DEXA scan to see if my bone density has improved. BTW, I am female, age 67 and was diagnosed with osteoporosis in 2015, age 59. Initially, I used Forteo with great results, then used Prolia up until June 2023. I decided to switch to Romosozumab because my bone density started to decline while on Prolia.
Maybe you can find a nurse that will administer the injections on your husband. Best of Luck! Take care
Just wanted to come back in to thank everyone for their very helpful contributions. I should perhaps have added that the consultant would have liked to prescribe Romosozumab partly because my husband was found to have two fractures of a vertebra - one acute one which has since healed and one somewhat older one of which we had been quite unaware. We think it must have been an episode of lower back pain that we ascribed to a herniated disc, which was indeed the initial A and E diagnosis of the recent fracture. And the other reason was because my husband, though now an old man, runs 3km five days a week and 5km (Parkrun - in just over 30 minutes) on Saturdays, and, for the sake of mental, cardiac and general health badly wants to keep this up.
But despite substantial efforts, and to his considerable frustration, the consultant has not been able to find a pharmacist or clinic who will dispense or administer the drug off licence (ie to a male) and is now having to go straight to alendronic acid. If anyone hears of a clinical trial involving men we'ld love to know!.
Eventi / Romosozumab I received my first 3 months of injections yesterday and have my first two while online in the morning. I must admit having looked at the pens and the printed instructions I am feeling seriously nervous. Can anyone who has already started their injections tell me how much it hurts. I have had hundreds of needles and cannula but dreading tomorrow. Thanks.
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