Hello I’ve just joined this group .
My story is after having back pain for years . I was eventually sent for a scan which showed I had multiple fractures on my spine I was immediately put on alendronic acid which I was on for 15 months . After the results from the bone density scan I was offered Teriparatide which I’m been on for 3 weeks .
I have a long way to go
Hello, I'm quite new to all this too. Similar story, had spinal fractures but kept being told the pains were 'just' muscular until I eventually got x-rays that confirmed the fractures. I'm wondering how the docotors decide what bone meds to put people on given the huge choice? I've been put on Romosozumab (usually abbreviated to Romo) as I'm deemed high risk of breaking more.
Hi I’m not sure how they decide . I was put on it after the results from the scan then waited nearly a year for the dexa scan and 20 weeks for the results. Then a phone call from the rheumatology department offering me the Teriparatide injections which I started 3 weeks ago .
I was told that most people with osteoporosis are started on something like Alendronic acid as was I but when I had a DEXA scan and was found to have severe osteoporosis plus a previous spine fracture that I had been told was either ligaments or muscle damage I was then able to have Evenity but had I not been advised by one of the nurses at the Royal Osteoporosis Society that it might be an option for me I would never have known as my GP had never heard of it. Anyway, I have just completed my 12 month course of injections and have gained 23% bone density in my spine which I’m really pleased about.
That’s excellent. I’m just 3 weeks into my journey then I’ve been told I’ll get another dexa scan after the 2 years
That's good to hear that's what I've just started, it's also known as Romo which is the generic name. It's so new my GP hadn't heard of it. Luckily I see a rheumatogist for something else (PMR) and she recommended it. Mind you my DEXA scans were normal before the fractures and still are, so it's a bit of a mystery how they've happened.
That is strange. I have PMR as well but in the year I was diagnosed I lifted something too heavy and felt something “go” in my lower back which was just put down to muscle or ligament damage. Five months later diagnosed with PMR and didn’t want to take the meds for it until I had been given a DEXA scan but if I’d waited on nhs for one it would have been six months later so I paid privately for one and got the devastating result of -5 in my spine. I was told that to be that severe I must have had osteoporosis well before I started taking Prednisolone for the PMR. Really strange though for you having a spinal fracture and showing as normal in your DEXA scan. I hope your treatment goes well and protects you from any more fractures.
That'll be the proof it works if I don't get any more fractures as my DEXA 3 years ago was only -0.7 and the recent one -0.9 which are both within the normal range. They can't do an accurate DEXA on my spine now because of the fractures so the last one was just the hip. The normal DEXA scans 6 and 3 years ago gave me a false sense of security
That’s really tough. I wish you well for the future. My pred dose for PMR is now only 1mg but I’m getting quite anxious as I near reducing to zero in case the PMR symptoms are still chugging away. It’s only been two years just over for me but sometimes I feel it’s never going to end but fingers crossed in a couple of months I cou,d be free of steroids.
So why risk it? Some specialists advocate staying on a low dose. As they say on the PMR forum the goal is not to pursue zero Pred but to wait for the PMR to go into remission and meanwhile manage the inflammation. And you can't affect as and when that will happen. Go by your symptoms and managing them rather than focusing on getting off the steroids. But if you feel fine that's a great sign
Yes, I would always stay on the steroids if I still had the symptoms of course but my aim is to come off them altogether as I want to stop taking the ppi asap. Just hate the thought of all the nasty things long term ppi taking can cause. Having said that, I was listening to an expert who was speaking at the PMRGCA AGM and in his opinion he said that any one on low doses of Prednisolone doesn’t need to take a ppi. I have also struggled with weight gain whilst having the Evenity injections and am borderline type two diabetes so I really feel in limbo at the moment
Yes I listened to that talk by Consultant Christian Selinger. He said under 10mg is low risk especially if the steroids are taken with food. Interesting what you say about weight gain and Romo/Evenity. I've been steadily losing weight which accelerated after the spinal fractures yet now even though I'm being very careful what I eat, low carbs etc I haven't lost any since starting the Romo, I wondered if it might be a side-effect and was going to look it up. I really got my blood sugar levels under control using a CGM and seeing how different foods and meds affected me.
Interesting.
Thank you
I had my biggest improvement with Terraparatide. I hope you will be the same. Welcome to the group.
Thank you
I am from Australia and am new to this site.
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