Injecting Romozozumab

[28Harvey28]

Hello all. I am new to this group but finding it really helpful. I have severe osteoporosis and suffered several spinal fractures and pelvic fracture. After waiting 18 months I finally got to see a Consultant who advised Romosozumab injections. I was told by the hospital that my prescriptions and learning how to give myself this treatment monthly would be provided by a private homecare company. My first course of treatment starts next week I have been contacted by this company and told that my training to inject myself will be online. I have never injected myself before and am finding the thought of this along with starting this treatment quite scary. My question is how easy is it to do these injections without someone showing you how face to face

[Craftycreator]

Hi I recently finished my two years of injecting Teriparatide. Once shown how to do it it is straight forward and needles are very short and very fine which I assume will be very similar with Romosozumab. However I was shown by a nurse in person how to do this who was sent by the private company responsible for organising deliveries of medication and accessories. I really feel that this initial instruction should be in person, as for a lot of people, the thought of giving themselves an injection is very daunting. I think these private companies who are contracted in to the NHS have a duty of care to patients and it should be part of the contract that patients have proper in person instruction and support. I would have been quite vociferous if I had not had the support that I was fortunate to have had. I don’t know what the ROS think of this on line tuition for people, perhaps a call to one of the nurses may be advisable. It is my personal opinion that so many services are loosing sight of the fact that they are dealing with human beings, who have real fears and already dealing with enough stress coping with a devastating diagnosis in the first place. Many people are not totally tec savvy too! I have a friend who isn’t even connected!

I hope you can get the company to send out a nurse to show you how to proceed if it is really worrying you. I would like to reiterate though that once familiar with injecting yourself it is very straight forward.

Very best wishes.

[28Harvey28 in reply to Craftycreator]

Thank you. Yes the injections do appear similar to yours. I have to do 2 straight after each other once a month for 1 year with a plan for this to be followed by a yearly infusion of a different treatment. The instructions seem straightforward but the thought of doing this for the first time whilst following instructions on a computer has heightened my anxiety and is becoming a bit overwhelming. However, I have waited a long time to get the treatment I need so I won't give up at the first hurdle and I will take your advice and speak to the ROS nurse. I agree it does appear many services are losing sight they are supposed to be working with people and this does require them to physically see people from time to time.

[Rathimata in reply to 28Harvey28]

Hi, I also have to inject Teriparatide and was shown in person but my sister who also has to inject medication for another condition also showed me what she does online. It was really easy to see and understand online so I would say try not to be too concerned. It may help to familiarise yourself with the instructions beforehand so you already have an idea what you’re going to be shown.

It’s perfectly normal to be anxious about injecting yourself - I was terrified but it really is very straightforward. I wish you all the best.

[Sunseaandsand]

Hi, with Romosozumab or Teraparatide it is usually normal practice to be shown how to inject either by a hospital nurse or in your own home by the company providing it to the patient.

It is highly understandable that you are feeling anxious about training being given online and it is quite unacceptable that you have been told to do so!

Perhaps you could do one of two things.

Call the company tell them your concerns and ask if they are able to arrange someone to come and guide you through your first injection.

The alternative would be to call the hospital who will have arranged it, tell them of your concerns because they are probably unaware that you are not going to receive a home visit.

The nurses at the hospital also can and do show you how to inject your treatment. Personally I don’t think they would be too pleased to think you would have to follow online instructions!!!

[Nuthatch]

it’s very straightforward. I started teriparatide in lockdown so watched a couple of videos. Had no problems at all other than needing a couple of new pens across the 2 years.

[rpd0423]

Sorry not familiar i get the Prolia injections every 6 months and after the bone density exam i just had, I learned that the 2 year treatment I've been receiving is working so I'm sticking to this one. Good luck!

[Hagrimony]

Hi, I just had the same situation. I was very nervous about starting the injections with only an online training session but it turned out to be very simple and I did my injections easily the next day. The nurse showed me clearly what to do and was clear that I could do my injections whenever suited me best, there was no pressure to do them at the time. The pens are easy to use and I read the instructions that come with them before the training session so I could ask anything I was confused about. The nurse answered all my concerns and it went well when I used the injection pens on Friday. I hope it goes well for you!

[Rhubarbtr]

it’s very easy. I had a video call with a nurse the first time but you could just do it from the written instructions. All you do is clean the injection site, on your upper thigh or tummy, pinch or stretch 5cm of flesh, take the top off the ‘pen’, press until it clicks(15 seconds) and you’re done. No side effects in my case. No need to worry or be nervous, very easy. No need for a nurse to visit, you’d be wasting their time from people who really need them.

[Samosalover]

I’ve been injecting teriparatide for three months now. I had to do it by reading the instructions that came in the box - about 4 pages of them in French (thank goodness for Google translate) and realising I had to go back to the chemist for needles and a sharps box. Yes, it is nerve wracking but in the end I just had to face it and do it, and it turned out straightforward and painless. Face it and go with it - you will be fine.

[Dancingdina]

Hello yes I totally understand your apprehension and totally agree with your replies below. I have been on it for 6 months and my daughter who is a nurse helps me. However I was asked by the osteoporotic nurse at the hospital if I would require help and would have arranged that. The private company delivering it rang me a few times to ask if I needed someone to call to deliver it.

Your local surgery would also do it for you

So persevere with contacting the private healthcare company to arrange or make an appointment with a nurse at your surgery on a monthly basis. You can be helped injecting it every month.

We need this personal human contact, and it is reassuring to have someone helping you , to know you’ve done it right!

Very best wishes

[bookbear68]

I have been injecting Romosozumab for six months and had experience of teriparatide before . The injection process is very different and the Romo injections are bigger. The company should send out a nurse to supervise you first time and I would strongly suggest you push for this. Once you’ve done it once you’ll be ok but it is not the same as teriparatide

[28Harvey28 in reply to bookbear68]

Thank you. Yes looking at the list of treatment Romosozumab does appear to differ as you say where you have to inject two injections each month one after each other. I am now of the view that since COVID there has been an expectation where it is increasingly becoming more and more acceptable to not have face to face contact for medical appointments etc., Whilst this might be easier and cost saving it is not always safe or appropriate and certainly does not take into account that we are all different. I was told by my Consultant and the hospital nurse that a nurse from the private homecare company would visit me at my home to teach me how to do these injections. Now that the Hospital has passed my treatment plan over to the private healthcare company this seems to have changed and the nurse from this company is not prepared to visit and wants to do an online one off teaching session. Not only are they being paid by the NHS to deliver my treatment plan, including the home visit for the supervision of my medication, but they are not taking into account a person's age, health, ability etc., I have no doubt that once I have been shown and done the first ones I will have no problem injecting the rest. Your response and the comments of others who have kindly taken the time to respond to me has really helped me see that I am not being unreasonable and just because others might be able to do it the first time without supervision not everyone can. Therefore I will continue to push for my first injections (month 1) to be delivered as expected by a healthcare professional.

[bookbear68 in reply to 28Harvey28]

Yes ask for what you need. Also your hospital may be able to put pressure on for them to come out to you. The nurses are very good and once you are underway you’ll be ok. After three injections I had an online follow up with them which was also useful but it does help to have someone go through it with you the first time. Good luck!

[EllieJ1970]

I completely understand your apprehension. I am 6 months into injecting Romosozumab and was incredibly apprehensive about doing it. Fortunately my rheumatologist agreed to demonstrate the first time in person, which was really helpful. I am totally phobic about needles but you can't actually see the needle and it's actually quite "user-friendly" if there can be such a thing when you have to self-administer meds this way! I agree with lots of the comments above - if you can get someone to come and show you how it's done the first time, it will really help. It might even be worth paying someone privately if you are really apprehensive and can afford it, and the NHS still flatly refuse (which I think is completely unreasonable by the way). Since I still get nervous (yes, my phobia of needles is quite bad!) I always arrange for a friend to be with me when I do the injections. You have to keep the pen pressed into wherever you inject until it clicks twice, which indicates that the full dose has been administered. I was a bit scared I might release the needle too soon, so the friend keeps his hand gently over mine as I press down to make sure that doesn't happen. I really hope it goes ok for you.

[28Harvey28 in reply to EllieJ1970]

Thank you you have done so well and now half way through this course of treatment. I think the problem here stems from the fact that hospital in my area does not support the fracture prevention service. This seems to be the case for half of the hospitals in the Country. After a very long wait and many fractures they finally agreed to see me and agreed to this course of treatment. Until that point I had not been on any treatment, apart from Vitamin D, Calcium and pain relief as and when. However, I have been told by my MP and the Head of the Hospital that the Hospital does not have the capacity or the funding to support me in person in the Rheumatology department and I assume this is why I have been passed onto this private company for the next year. The future plan is that I go onto a yearly infusion after this one which I assume will be through the hospital. Hopefully they won't want me to do this myself!!!. That is a really good idea to have someone with you and I will certainly arrange this for myself until I feel confident.

[bookbear68 in reply to 28Harvey28]

Good idea about having someone with you it’s all about confidence

[Suebbop]

Quite easy & I was learned to do it over a phone consultation,Finished my yearly injections now

[Mavary]

Hi like you I was very nervous at first. I was put on Terraparatide for two years. I did have a nurse come out to show me how to do the injections once. I was on my own from there on. I really thought I can’t do this. But you remember the pain from the broken bones and it steers you on. I know you won’t believe me but after the first couple of times of doing it you wonder why you were so scared. You can do this. You don’t want more broken bones. Good luck.