I’ve got a couple of questions. My rheumatologist wants to put me on Evenity, but my fridge is erratic and so I am looking into getting a small fridge (pharmacy?) that would keep the medicine at the correct temperature. I’ve done some research on this but the ones I’ve seen are either too small or far too expensive. Can anyone suggest one? Thanks.
Second, I’d like to have my treatment monitored - whether on this medicine or some other. A lot of doctors - including mine - don’t seem keen on this as apparently not reliable. I think it would be helpful owing to my metabolic issues. Can anyone point me to a doctor who might be prepared to monitor my progress? I live in London and would be prepared to pay for this to be done privately. (I assume this isn’t something a GP could do.)
Hello. Not really sure whether I can help with the fridge situation but if you have space you can get table top fridges. Not really sure on the prices of these I think I have seen them for less than £100 but you may feel this is too expensive if you are only on the treatment for 1 year. Not sure whether you have a family member or a neighbour who would be willing store the treatment. Of course this might be practical for you with delivery needing to go straight into firdge. The boxes that the Evenity comes in are quite big and you usually get 3 months delivered at a time. They have to be stored in the middle section of the fridge so they do take up quite a bit of space. I don’t think those very small fridges that are used for cans of drink would be any good. It could be that you can pick up a second hand one. As for monitoring whilst on the treatment this is usually done by the prescriber and in your case it looks like the Rheumatology Department. I suppose it might differ in various parts of the Country and different hospitals but I remained under Rheumatology throughout the treatment and received 3 monthly appointment (via telephone) but also could phone the Rheumatology Nurse at any time if I had a problem. I had my Evenity delivered by Pharmaxo and the Nurse who showed me how to do the injections said I was able to phone them if I had any difficulties and they would contact hospital. I had some routine bloods done which were actioned by Rheumatology but carried out at my GP surgery. This may also differ. Maybe if you talk to Rheumatology about your medical history they will be able to let you know how they plan to monitor you whilst on this medication and also for plan going forward. At the end of my treatment I had a DEXA scan. I was due one because I hadn’t had one for a long time so this probably wouldn’t always have happened. I also had blood tests done ready for the transition onto the next course of treatment. Really hope you manage to work something out and wishing you all the best on the treatment
Hi Harvey, thanks so much for this. It sounds then as if it differs depending on the dept concerned. I saw this doctor privately - given the very long wait I’d have had on the NHS. However, fortunately he has an NHS list and I’m transferring to this. I am a little concerned though that it might be difficult to get regular monitoring as he doesn’t seem that keen on it - as not totally reliable? I gather this is often a consultant’s response but a gauge of some sort as to how the treatment is doing I think would be extremely helpful. So I’m not sure how to proceed here. Re the fridge dilemma. I didn’t realise you get three months’ delivered at once and that it would take up a fair bit of space in the fridge and have to be on the middle shelf. I certainly couldn’t rely on my fridge and fitting it in might be tricky too. I did discuss this with the consultant - whether I could ask someone to store it for me. But it is a big ask and they would have to be there at the right time for the delivery. Then I’d have to be able to access it when they were around. I believe there is a nursing service where if there isn’t a suitable alternative they will bring and administer the injection each month so no storage issue. Thanks again for your suggestions. I hope your treatment is going well.
Sorry, something seems to have gone wrong. I thought I’d replied to 28Harvey28 and it’s gone to the ROS instead! If an admin could get back to me to explain how I can get my message to 28Harveyy28 that would be great. I’ve not had this problem before. Thank you.
PS It shouldn’t have gone from my name, but my Ros community name. Can you help here?
Hi. The message has come to me so you appear to have done your reply to me correctly x
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Hi. I saw a Consultant Rheumatologist first through the NHS. This Consultant also works privately at the Nuffield. This is the same with a lot of the private ones. After consultation and treatment plan I have never seen him again but am still open to him for duration of treatment plan. My plan and reviewing has been handled through the Rheumatology Department at my local hospital by one of the Rheumatology nurses. You have skipped the first part but if the private Consultant that you have seen is going to transfer you now to the NHS it might be possible for the rest of your treatment plan to follow similar to mine. I completed the Evenity and am now almost 10 months into my next treatment of yearly infusions. I will be having these for 3 years and then will see the Consultant again to decide what happens next i.e. a pause in treatment or continuation of treatment. The Evenity is 2 injections at the same time once a month. Clearly the hospital where I am have some form of Contract with Pharmaxo who organised everything to do with the Evenity. They were responsible for showing me how to self inject and they coordinated the delivery of Evenity and sharps bin and collection of sharps bin. My GP has not had anything to do with this at all. Hope this helps a little, although you still have the hurdle of storing the medication
Hi Harvey, thanks for this. I saw a rheumatologist privately as the alternative would have been waiting 8 months, then the appt was put back so it would have been over a year. I didn’t think I had a lot of choice and I was lucky to be able to make that choice. However if it’s left me without means of monitoring that would be a worry. He’s transferring me to his NHS list. Maybe that option will be restored? Otherwise i’m in a quandary.
The fridge is a problem. I can’t see an immediate solution, unless the nurse service is able to help, if that actually exists (I was told it did but I don’t know how reliable the source was.) Thanks again for your help.
Hi Lizzie3,
Just replying here publicly in case anyone else has wondered about this too 
Your reply has gone through correctly to 28Harvey28 and is showing in this thoughtful conversation about romosozumab (Evenity®). It looks as though you replied using an email notification you received. These emails are formatted so that members can easily reply directly from their email inbox, without needing to return to the community website. Your response is then automatically added to the public conversation under your community username.
The formatting can be a little confusing because the notification email may look as though it has come directly from another member, or as though your reply is being sent to the ROS. However, the email is generated and managed by the community platform itself. Your email address and personal contact details remain private. Other members will only see your community username, Lizzie3, alongside your reply.
I hope that helps it feel clearer, but please do let us know if there’s anything else we can help with or if you have any other questions. 
We also wanted to mention BoneMed Online, our free online service for people who are starting or changing osteoporosis medicines. It provides tailored information and may be helpful for anyone reading this thread.
Wishing you the very best,
Lulu
ROS Moderator
Thank you, Lulu. I was a bit confused as my reply to 28Harvey28 appeared under my name rather than my ‘pseudonym’ - Lizzie3. And of course I want to protect my privacy.
I do still need to know how to get my treatment monitored, whether Evenity or any other osteoporosis treatment, given my consultant demurs about this. So I will be contacting the ROS nurses about this - hopefully tomorrow.
Thanks again.
Best wishes
Lizzie3
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If you can afford private medical treatment could you afford to update your fridge? That seems to be the most sensible solution. By the way I did what you did - saw a private rheumatologist - who prescribed me evenity and took me onto his NHS list.
Hi Belsize
I’d agree but this is the third fridge in under two years that I have had that is not reliable. It’s a good make, too. Or is supposed to be!
I’m very relieved that I was able to transfer like you to the doctor’s NHS list - I was self pay and the treatments as I’m sure you’ll know are very expensive - but I am concerned about the monitoring aspect. I’d have happily stayed with my local hospital who has a very good rheumatology dept but the first appointment wasn’t until October, then that was put back till next year.
Hi there, I feel sadly that there is a general lack of either seriousness or priority given to Osteoporosis or its treatment as a whole. I was referred via the NHS for Evenity as it was felt it was more than needed following 7 vertebral fractures but after an initial telephone consultation by a Rheumatology Consultant (why do we not see anyone face to face anymore) there has been no follow up and I’m in my 6th month of treatment. I know that like all NHS hospital departments Rheumatology is undoubtedly very busy and overstretched but given that Evenity comes with a black box warning (slightly increased risk of stroke or cardiac events) it should surely be up there with treatment needing at least a phone call follow up to monitor how we are getting on. I’m sure other Rheumatology conditions that are followed up don’t require treatment with medication that has this warning. Given also that Romosozumab is still in relative infancy in terms of prescribing in the UK then I would have thought this alone would prompt more close monitoring.
As I have said before though in previous threads, I don’t think Osteoporosis in general is really given the acknowledgment it needs. Given the huge numbers of people diagnosed with it there seems to be a definite lack of priority given to its management. I may be speaking completely out of turn here but I feel as if Rheumatology departments have been given this problem as a bit of an add on to their already overstretched workload because there is no other Department under which it logically sits.
Maybe now we can hope that the diligent work the ROS are doing to enable Osteoporosis is given the awareness and management it clearly needs and we may make some headway. It’s about getting awareness out there, otherwise the situation with the hospital is never going to change.
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Hi Piglet
Thank you for your email and I sympathise with your concerns. There are many more treatments (I mean for other conditions too) but medicine is about more than a test and a pill! I feel that we’ve rather lost that more holistic approach that came with the family doctor. Now I feel we have to take much more responsibility for our care and it can be worrying and exhausting.
I do hope the Evenity treatment helps you avoid more fractures. I know very good things are said about it. But I agree, it should be monitored and it is still quite new I believe and there are these warnings that come with it.
We’re very lucky to have the ROS and I believe they were told to prepare for a lot more Dexa scans - that they were going to be offered routinely to post-menopausal women (as someone told me used to be the case). So what happened to that?
I’m hopeful that there will be more focus on women’s health. We do seem to be treated rather as second class citizens. I recall a gynaecologist saying to me years’ ago ‘if men had periods they’d have found a way to stop them!” I don’t think a lot has changed since then but I may be wrong!
Good luck with your treatment and I hope you are able to get it monitored and another appointment (in person this time) with your rheumatologist. Keep pushing! (That’s what a cousin, a nurse, said to me years’ ago. The more demanding patients are the ones that get seen first. I know it’s not easy though!) And if you have a sympathetic MP you could write, or see them in their surgery to try and raise awareness that way?
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Hi Piglet,
I completely agree with you.
My diagnosis was over the telephone with a rheumatology nurse, with a follow up telephone call five months later to see how I was getting on with the medication that they prescribed. The nurse seemed to have a set script and she didn’t want to answer any of my questions and told me to get in contact with my GP.
When I raised the fact that I am deeply worried about basically being left to deal with this on my own for the next 5 years her response was “it’s not like you have cancer!” When I mentioned the ROS figures of 2000 people a year dying as a result of OP there was just silence at the other end of the phone, followed by “I think I’m going to end this conversation. Don’t forget to take your vitamin D supplements every day”.
Sadly, I think things are more likely to get worse rather than better. Research is happening where they are using AI telephone calls (DORA) alongside the nurse telephone calls at the hospital where I was diagnosed to see if these DORA calls can be used to replace the calls from the nurses… I agreed to participate in these calls, and as they stand at the moment the AI calls are not fit for purpose. As native English speaking person (and I have been told a well spoken one at that) DORA struggled to understand what I was saying several times… Apparently this technology is already being used by some NHS hospitals instead of follow up telephone calls with a doctor or nurse for people who have undergone cataract surgery - so they seem determined to roll these calls out for other illnesses and conditions in the future. 
Hi Flutterby,
I think the world has definitely changed post covid whereby telephone consultations seem to have become the norm and that’s if you can get a follow up at all. I’m very sorry to hear the experience you had with the nurse and that you had such an upsetting response to expressing your concerns and fears. I am just so glad we have the ROS. At my lowest point when I was feeling really depressed about the unbearable pain from my spinal fractures and the long term effects of this condition, it was one of the nurses from the ROS who literally gave me the time and the advice I needed. I am now on Romosozumab for a year and I have to say that the nurses, the Pharmacists and the admin staff from Pharmaxo who make the drug have all been super supportive. I live in hope that at some point I might hear from the Rheumatologist for a follow up abut who knows!
As for AI calls….whilst Consultant calls are one thing AI is something else entirely. It’s not even an actual person so that in itself can’t be a good way of following people up surely! I hope you get some answers to your concerns and you are definitely not alone in your fears. I’ve been lucky to have a pretty healthy life up to the age of 59 when OP was diagnosed but it definitely pulled me up in my stride and I was knocked sideways for a long time until I got my head around it.
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Hi Piglet
Your email came to me in error - I’m not ‘Flutterby’. I hope it has also gone to Flutterby! But I’d resend just in case.
All the best and I hope things get better for you soon.
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Hi Flutterby
Something seems to be going wrong with the community site. I’ve just had an email meant for you from Piglet and now I’ve had yours to Piglet!
I hope you can sort out what’s happened and reach each other.
All the best
PS ROS admin - could you look into this? thanks!
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Oh really….
I don’t really find the site the easiest to use.
. Maybe it’s me but I don’t find it particularly user friendly. Thanks for letting me know though
Hi Lizzie3, yes, I received an email notifying my that Piglet had replied to my message. But thank you for taking the time to highlight the problem with the system 