Hi I am new to this group and recently diagnosed. My consultant is pushing to get Romosozumab/ Evenity for me and I wondered is anyone had taken it and how they found it? Please do not scare me with negative experiences and side effects if possible! I am already petrified but think I have little choice than to take an anabolic bone building drug.
Thanks for any support,
Gill
Hi, I’ve just started Eventity , like you hated the thought of it . So far all going well , yes the injection site a bit sore for a couple of days , yes actually doing the injection yourself isn’t the best but in myself I’m fine and just hope it works which is better than the alternative,
I have just started Teriparatide which is similar but injected daily. I too was terrified but I'm about 6 weeks in and doing ok. TBH it is a little frustrating for me injecting daily but I focus on the ling term goal and consequences if I just give up. Yes osteoporosis is awful and scary but meds are so much better than when I was 1st diagnosed in my late 40s they could not even explain why I had osteoporosis and still cannot. Anything that rebuilds has to be better than a drug that just maintains what you have. Good luck don't read Google side effects everyone is different.
Many thanks for your reply and glad that you are doing OK. I agree with you that there seems little point in taking a drug to maintain BD when there are options like these which can actually build back some of it. I really hope that you get good results for all your persistence .
Please read my reply to Rooruby.
Hi, to maintain any gains made by treatment with Teriparatide it has to be followed on with a different treatment.
The best and usual treatment given will be Zoledronic acid.
Without this all gains will be lost 😞 there is little point having Teriparatide if you are unable to follow on with the Zoledronic infusion x
I probably will go on AA injection in 2 years after Teriparatide thanks x
What are the side effects of the injection as I have also been advised to go on. For now I have refused and also stopped taking the alendronic acid tablets as well. My T score was -4. I see myself as being fit and healthy and have always kept myself active. I just dnt know what to do for the best as you hear some terrible side effects even when stopping some treatments. Would appreciate any information
Have you broken anything?
I am 63 and not broken anything. I did fall down the stairs when I was 45 and boke my wrist but apart from that I am really active and still work.
My scores are nowhere as high as yours and yet I've fractured 7 vertebrae in 4 years. Weird isn't it!!
I wonder what made them test you?
I didn't know I had it until I fell downstairs and broke my back.
I know and I have a really physical job where I have to lift on a daily basis. Think the reason I was testing again was my son picked me up and swung me rnd and I felt this pain and crunching noise and was in a bit if pain for a couple of weeks. Do you think that cld have been fractures for me and didn't realise
I would be surprised that you'd fractured it if it cleared in a couple of weeks, but having said that some folk have them and don't know they've got fractures!!I know everyone is different but I did mine in May, it's not the searing agony it was when I did it but they've still not mended and it really hurts, I'm very limited in what I can do.
Having been fit and active it's hard to understand.
Have u had any scans, x-rays?
Standing x-rays seem to show more detail than lying down, again, don't know why.
It's a proper bummer to put it mildly🤷🙃
I have been on Teriparatide for about 6 weeks and not really noticed anything apart from tummy stings when I inject the las week or so. I just spoke to pharmacy and they said try and move around tummy more maybe I tend to grab same bit of flab each time😂😂. I was terrified about dizzy or passing out but what I did was take it 30 mins before i go to bed so at least I'm safe from falls. I too have severe osteoporosis t score -4.7 I to AA Tablet for 2 years but not much changed did maintain at same score but then I had spinal fracture hence moving on to Teriparatide. They 1st suggested the 6 month injection but I was worried about rebound effect of that 1. Plus I have to think about what I will take in 2 years once Teriparatide stops. I was also so stressed about travel but most hotels etc have fridges in rooms and you can buy a pack that keeps cool for about 48 hours so I just thought I need to do somthing and this was my choice. Hope you find somthing to suit you speak to ROS nurses they are so helpful and informative xx
Thank you so much for your reply. I really hope it works for you.
I have my last injection in Jan and have just had Dexa scan. Hopefully I have made more bone. I will report back once I have the result if you like.
Hi Doormouse100 thank you and I love your selected name! I would love to hear how you get on and really hope that you get good results. Are you on a bisphosphonate now ?
Hi, I still have one more injection of Romo to have then will be on a yearly infusion to lock in any gain I made.
Hello Patatas. I am now into my 4th month injecting Romosozumab/ Evenity. I was very anxious before in deciding whether to do this along with the thought of injecting myself and potential side effects. I have found it easier than I thought it would be. The injection pens are easy to do. I usually do mine on side of thigh, pinch skin, press down on pen, wait and it's done. Bit of a sore spot for few days after but really no worse than any injection I have had in past. I make sure that the places I am going to inject is warm, that the injection pens have been out of fridge and reached room temperature. During the colder whether I am taking them out of the fridge for 2 hours before I inject. I also make sure that I drink plenty of water before and for next 24 hours after injecting. I don't know if this has helped me but I am following what I was advised to do by the nurse. Wishing you all the best on your journey
Hello Patatas. I took Evenity for a year and have since had an infusion of Zolendronic acid. My experience of Evenity was okay. The injections were not a problem for me. Make sure you take them out of the fridge at least an hour before you inject to bring them up to room temperature. Everyone has different experiences and I appreciate how difficult it can be to make a decision about medication. My compression fractures were so painful and debilitating that I was prepared to give Evenity a go. Good luck with any decision you take. We all need to look after ourselves in the best way we can. It can be a lonely road but the ROS is a great help to us all.
Hi Tofueater and thank you for your positive and helpful reply. I am kind of in the same boat as I don't feel I have any choice due to recent compression fractures - out of the blue! If it's OK to ask did the Evenity help you with any improvement?
Hi Patatas, did the Evenity help me with any improvement? It’s really hard to say. My year of taking Evenity only ended this June2024, and since then I’ve had the infusion of Zolendronic acid. I still have good days and some not so good, probably when I have been over doing things. Evenity is supposed to be very good at re-building bone mass, but how can we know if it has done so without having another Dexa scan and I don’t think I’m due for one of those until I have another two infusions. I haven’t had another fracture recently and believe me I have got everything crossed and am touching wood as I’m saying this! Information from the ROS and their wonderful specialist nurses is probably the best you will get, but at the end of the day we just have to make our decision about medications and basically hope for the best. I do send you my best wishes and hope you don’t suffer too much. Osteoporosis is a difficult problem for us all. It really is life- altering and don’t be afraid to ask people to help you.
Many thanks Tofueater. I hope when you do get your new dexa scores your BMD will have improved . Can I ask how you managed to get ZA infusions and not the AA or ZA tablets? I was told I could only get the tablets after taking Romo for a year. Thank you !
Hi Patatas, I had been on AA for 18 months, the on Risendronate before being prescribed Romo. How the decisions are made I honestly don’t know. The pharmacist I use struggled to get AA at one point and he put me on Risondronate, but it gave me really bad headaches so I came off them. The pharmacist under the Rheumatology consultant rang me up and discussed taking Romo. He talked me through the possible side effects and the benefits and I decided to go ahead. Hope you get plenty of information from your medical team to help you make your decision. You can always challenge them and ask for more information. It’s important that you get what you need to help you. Good luck 😉.
Hi 28Harvey28 and a big thank you for this helpful and encouraging reply and your good wishes. Your tips are invaluable. All the very best going forward and fingers crossed for a great outcome for you.
I'll be honest and say I envy you! I'd be delighted if I was offered it
I'm having a Zolendronic Acid infusion next week, but long story short:
I've had to fight for it.
I had been on AA for 4 years due to spinal fractures,
Fractured again in May, simply by turning round
Hence to my thinking that AA hasn't worked!
The physio did say, well imagine if you hadn't taken it! Which was an interesting point of view😅
Consultant told me all about Eveinty and Teriparatide and how good they were, then they got my DEXA results and said sorry the scores not bad enough🤷🤷🤷
I WANT THE BEST like she told me but although they asked the person at the top more than once they wont budge, your score has to be such and such..... Before we are allowed to offer it.
I must say that the consultant was upset and apologised but I didn't fit the criteria despite now fracturing 7 vertebrae
I must admit I asked just how bad did I have to be?!?
When I read here about folk refusing to take the drug they're offered, I can only imagine they've not broken anything
The pain has been horrendous for years now.
Please, the drs wouldn't suggest you take something that would harm you.
Not only is it against their training it would be a waste of the time and money that the NHS spend, which is why there's rigid guide lines as to fitting within a certain criteria.
Fractures are so awful, my life has changed beyond recognition against what it was 5 years ago.
Good luck, I hope you go for it, we need medical help otherwise we wouldn't have the condition xx
I really feel for you as you seem as if you are having a really rough time. To fracture so many times to be told that you can get the injections if you feel they would help is terrible and must leave you wondering what is next.I did decide to take them but had a look at the side effects and decided for now not to take them. I must admit reading about so many people taking fractures fills me with fear.
Hi CinnamonRose - I am so sorry to hear about your experience and I can't imagine why you would not qualify for Romo . Have you asked for a second opinion ? I am sure you have tried everything already . I agree with you about fractures and anything is worth trying once you have one, far less 7! How are you managing the pain? I am using Lidocaine patches and they do seem to help me with minimum side effects. Good luck and keep up your campaign to get an anabolic.
We've all tried Inc the surgeon and the person at the top in charge of who has what refuses. I'm allowed to have as many injections as I need and this last lot I had were a miracle, after over 4 years I can lie down in bed without it hurting. They told me if the injections help they can do them every 4 weeks. I can only surmise that the other drug is extremely expensive🤷🏻 they did reassure me by saying Zolendronic Acid infusions were very good. What I find worrying is that I'd taken AA as good as can be for over 4 Years and it hasn't worked. When folk say they're doing it by diet I worry tbh, I've eaten well, make proper meals from scratch, it doesn't seem to have been of any benefit.
Oxycodone and Duloxetine have helped tremendously.
Hi,like you I was on AA for 5 years after compression fractures,my scores remained the same -4.5 spine and -3 5 hips,I'm now starting teraparatide in January, very worried but I am quite well and want to stay that way,again like you I cook from scratch and eat healthy,plus a few supplements.....here's hoping for a good outcome.....good luck.
Teriparatide is what I had been hoping to have when they told me despite the fractures my scores aren't bad enough. The worst was hip-1.5 my spine, which broke for the fun of it, it's only -0.5 so it's totally baffling to put it mildly!!
Your scores are incredibly good and you say that you have taken AA for 4 plus years so surely it has worked for you and perhaps this is the reason they do not deem it necessary to give the other treatments now.
What were your scores before you began the AA 4 years ago ??
Perhaps a call with the ROS nurses would be really helpful for you.
They admit (the medical folk) that it doesn't add up, I only turned round to pick up my bag, how can I have such good scores and get fractures just by turning round, it honestly doesn't make sense and is driving me crazy 😧 It's incredibly painful as well
Hi, how effective are the Lidocaine patches??
What kind of pain do they help you with and are there any side effects from using them?
Do you mind sharing what part of the country you are from as these were once suggested to me by the nurses but my GP told me they were not available to him to prescribe.
Need to add that my GP is very good and will quickly prescribe anything that may help with the pain.
They seem to calm down the pain although it never goes away totally. I think it's mostly nerve pain but also feels like the bones themselves are sore? I use diazepam for muscle spasms but only take these rarely. The patches also feel like they give me some cushioning around my bones. I am in Scotland -NHS Lothian? I think you can buy Lidocaine patches on line but they are only 4% as opposed to 5% which I get prescribed so not sure how effective they are. There is also Nefopam ? Have you tried that? Lidocaine might be worth a try with your GP and if it doesn't help at least no harm?
I cannot believe after all the fractures they refuse you. Alendronic Acid only maintain you obviously need to rebuild. I would ask for second opinion. No one should have to suffer with this amount of fractures wishing you all the best
They've tried, both the spinal consultant and the osteoporosis team, but apparently you've got to be below a certain score and there's no way of budging them so I can only surmise that is set by NICE or whichever government department that deals with it.
I would contact my MP and make a great big fuss. That might help. It is shocking that with all of those spinal fractures they are still telling you ‘your numbers’ aren’t bad enough - surely you multiple spinal fractures should count for something.
Whatever happened to looking at and listening to the patient? You are obviously a victim of ‘treatment by numbers’.
So wrong your expected to live with this pain. I was told it was a fracture of spine within a year
Hi I have had 4 monthly doses of Romosozumab, l agonised over starting it. But have had no side effects , we are fortunate in my opinion to be offered this chance of bone building. I was advised on this forum to take my injection at night, as I had slight swelling and itching at injection site. So I sleep though that! I hope you can come to a decision with all the advice you are given .
Thank you ! I am feeling encouraged and a good tip.
may i check, please, are you on prolia ..?,prolia must not be followed consecutively by teriparatide.
also, ask consultant what the plan is after evenity - there must be a plan immediately after finishing teriparatide.
hope it goes well .. !
Thank you . It is not Prolia which is Denosumab but I think I will need a plan anyway to freeze in any benefit in BMD achieved. AA or the like.
Hi patatas ,
Warmest of welcomes 
Thank you for joining our community here! Feeling anxious about your next steps is very understandable, and as our wonderful members have shared, something that many can relate to! If you'd like more information and support for living with osteoporosis, please check out our website: theros.org.uk/
Hope you can continue to share with us here and find the support you're looking for
Wishing you all the best,
Lulu
ROS Moderator
I've been on it for quite a few years with no side effects at all one injection twice a year then forget it great
I've done three of the monthly injections so far, no problems except for minor pain at the injection site for a few days and brief headaches. In fact I think it has had an analgesic (pain-killing effect as my back where the fractures were is now a bit less painful. Having researched all the options I feel fortunate that I am able to get the Evenity as the research seems very promising, it's the most rapid bone re-builder after fractures
Romosozumab Update: Severe Joint Pain
Vertebral fractures and starting zoledronic acid
