I recently - this morning - posted about the drug Denosumab used for treating osteoporosis, and have received a reply that the drug is also known as Prolia.
So if anybody has had any experience of this drug I would be happy to know of it - side effects, usefulness etc. I’m shortly to have my final injection of a course lasting 3 years. Then a Dexa scan will decide whether I continue on that drug or change to another - or have a break.
Thank you in anticipation.
Hiya. Yes I'm also on Denosumab. I'm having my fourth jab in March. Side effects - I think my hair is thinning which is not good. I have osteo-arthritis as well as osteoporosis and fibromyalgia. Therefore I'm in continual pain with my joints. I have a wedge compression fracture in L4 which is currently stable. My osteoporosis was discovered when I fractured my femur in 2021. I have an intra-medullary nail in my right leg which is now shorter than my left leg. I have awful back pain which I'm taking duloxetine for and at times codeine. I have put on over three stone as a result of drugs (mainly pregabalin and mirtazapine) which I'm now coming off the mirtazapine. The pregabalin was stopped a while ago. I'm now 1 point off being a diabetic and was recently diagnosed with high blood pressure too which I've been put on medication for. My dexa scan showed previously healed spinal fractures. I have osteopenia in my spine and osteoporosis in my good leg (both the femur and the hip).
Prior to all of this, I weighted 7 stone 7. I'm now 11 stone
I am now very sedentary due to pain.
I do however remain happy and positive. I nearly died twice in hospital and had to spend over a month in a care home re-learning to walk. So I'm lucky I'm here. As someone said to me "It's just a new normality". Wise words.
There is a new and better drug out in the UK called Romosumab. According to my useless rheumatologist, it isn't available in my area.
Best wishes to all, Golly
Phew! What a lot you gave gone through. But thank you for your reply. My hair has also thinned but whether because of the Prolia I’m not sure - I have a feeling that was noticeable after starting methotrexate many years ago. And many drugs for other conditions list hair loss as a possible side effect.
I shall see after the final injection and follow up Dexa scan where I am.
Hello again, Golly.
Just re-read your post, and wondered why you had put on so much weight. Some of the drugs you mentioned must be the cause. Which ones were they? Also was it your Rheumatologist who prescribed the duloxetine for the back pain? I have bad back pain but have had nothing prescribed - other than the usual paracetamols. I would truly like to find something more efficient, but nobody has come up with anything. I’m collecting information from all quarters just now to present to my rheumy nurse on 13 March when I have my denosumab injection. I feel I need some ammunition! This Forum is a hive of information!
Call the Royal Osteporosis Society…they have excellent nurses who deal with all the OP drugs all the time…they have all the information to help you with your query.
Thank you for that suggestion; something I should have thought of! But I shall phone tomorrow and have a chat with someone - I do seem to be ignorant about this condition. After stopping the Alendronic Acid years ago it was never suggested that I should start another drug - even after a fall which resulted in the fracture of the head of the femur (right hip), the fracture of my right elbow and a pneumothorax.
It only came up 2 years ago when a sharp pain in my lower back - out of the blue, while standing up drinking a cup of coffee - led to an X-ray in the A&E dept which revealed several spinal fractures in lumbar and thorax regions. Some had healed, and I was advised to report to rheumatology.
I’m just hoping that these last 3 years of treatment have had some effect, but from what I’ve read on these posts that may not be the case. However, I mustn’t be too pessimistic.
People with a very high fracture risk may be offered romosozumab or teriparatide (anabolic treatments). Teriparatide, romosozumab and abaloparatide can only be taken for a limited time (24 months, 12 months and 18 months, respectively).7 Aug 2024
You might find the above information useful, bienassis. Contraindications are all available on the individual drug information BNF (British National Formulary), NICE (via Gov.uk) and ROS nurses. Best of luck.
Many thanks for that information - I’ve been collecting a lot of helpful advice from this Forum, and intend to bring it up when I see the rheumy nurse on 13 March. There’s so much to be aware of - and I didn’t realise there were so many drugs. I think I must have a high fracture risk - my spine in both Lumbar and Thorax regions have previously fractured vertebrae. I’ve been told to put on weight but don’t find that easy. And not being able to move about much doesn’t help, of course. So much damage has been done over many years by the rheumatoid disease.
What's worse....being diagnosed with RD or the meds that we have to take to control it??
Injectable Humira
Dental extraction and prolia
New Drug
Is it down to cost or how server you have RA.
