ROMOSOZUMAB: Hi, Are any members having... - Bone Health

Bone Health

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ROMOSOZUMAB

Sunseaandsand profile image

Hi,

Are any members having treatment with Romosozumab?

I am interested to hear from anyone who has experience of being treated with it.

At present it is only available privately in the UK but I have been told that it is hoped to be available on the NHS by the end of this year.

I was also told it is only a years course of treatment given by monthly injection.

45 Replies

It's available in Scotland already, but probably early days for people reporting side effects. Yes, I believe that's right, just for 1 year, followed by another medication, probably a bisphosphonate. It comes with some health warnings so isn't suitable for everyone.

Sunseaandsand profile image
Sunseaandsand in reply to Met00

Thank you, I know it has been used in other countries for some time now but information is quite scarce.

I will try to see what else I can find and hope someone comes along who is actually being treated with it.

I believe you give yourself two injections a month for one year.

Thank you.

Not entirely sure but I think it might come with a black box warning. I have read this in a post from someone on another forum but can’t remember exactly. Worth checking though. Google it and also the explanation for a black box warning to be sure. Perhaps someone who knows more about this drug will be able to give you the information you require.

Sunseaandsand profile image
Sunseaandsand in reply to JGBH

Thank you, I want to do some more digging on this as I am told I would be a possible candidate for it.

HeronNS profile image
HeronNS in reply to JGBH

Yes, it comes with a black box warning. This drug, brand name Evenity, is brought to us by the people who brought us Prolia.

fda.gov/news-events/press-a...

JGBH profile image
JGBH in reply to HeronNS

Hello Heron, Thank you so much for the information. The black box warning is for Romososumab, but do you know if there is a black box warning forTeriparatide (Terrosal)? Where can I find good information about this drug?

Also, I had read that there was a risk of bone cancer when taking Teriparatide… when I asked the consultant she told me this risk had been removed now… Really? I am afraid I don’t trust the doctors anymore… Do you know about that risk and if so would you be able to give me some links please? (If you can of course). Thanks.

HeronNS profile image
HeronNS in reply to JGBH

As far as I know the risk was always very slight. Thing is, in the preliminary rat study, the rats did develop a kind of bone cancer. Of course you can't run a study on humans to find out if it is the case for them as well, and that's why teriparatide was restricted to use for only two years as it was felt this would practically eliminate the risk.

JGBH profile image
JGBH in reply to HeronNS

Many thanks for your reply. I need to do more research… Is there a website that is more informative regarding Teriparatide, that you’re aware of?

HeronNS profile image
HeronNS in reply to JGBH

Maybe this? rtihs.org/news-and-events/f...

JGBH profile image
JGBH in reply to HeronNS

Thanks, will look into this, and make notes.

HeronNS profile image
HeronNS in reply to JGBH

Ifyou find more pertinent information maybe it would be helpful to the community members if you made a new post with the info? There is always interest in the effects of the various medications. :)

JGBH profile image
JGBH in reply to HeronNS

Yes, would do so. It will take me some time as everything is a struggle at the moment.

HeronNS profile image
HeronNS in reply to JGBH

This is about Terrosa

ema.europa.eu/en/medicines/....

JGBH profile image
JGBH in reply to HeronNS

Thanks again. Will add to my list of research.

HeronNS profile image
HeronNS in reply to JGBH

I just found this, but I'm afraid my brain is in no shape to read through it. Does look like the black box warning has been removed, but NOT the risk for *some* patients to develop osteosarcoma.

pi.lilly.com/us/forteo-pi.pdf

JGBH profile image
JGBH in reply to HeronNS

Many thanks to you Heron! I will read it. Like you I haven’t been feeling great for a while but I do need to find out all I can before making a decision. I’d rather not having the treatment, my next bone turnover results and Dexa scan results will help me to decide. Thanks again, much appreciated.

MollyStark profile image
MollyStark in reply to JGBH

Hi JGBH, I am on teriparatide. There is no black box warning for it. Bone cancer is a very rare risk (it caused rats to develop bone cancer in testing.) Apart from the fact that I don't agree with animal testing, rats as a species have a high propensity for developing tumours in general.

(Sorry Sunseaandsand, I appreciate your post was about another treatment but thought I would reply here. I would be interested in hearing more about romosozumab as I'm not looking forward having bisphosphonates when I finish Forsteo.)

Hi MollyStark,Hope you are keeping well, I am hoping to gather more information about this treatment as the results as I undestand it are very good.

It would have to be followed on by another treatment though.

As with all other treatments it does carry a risk of side effects.

Take care .

JGBH profile image
JGBH in reply to MollyStark

Hello MollyStark,So kind of you to send a post. How long have you been on T? Any side effects? Does injecting every day is a problem? I already inject a biologic for RA once a week and B12 from time to time.

I don’t really want to be ob osteoporosis drugs for the rest of my life..Can’t have bisphosphonates anyway..

Of course it would be interesting to hear more about romososumab… which has a black box warning.

MollyStark profile image
MollyStark in reply to JGBH

Hi JGBH, I have been on teriparitide since October 2020. I inject every day in the evening (it is a two year course.) It's quick and easy to inject, it takes longer to get it out of the fridge and record the injection in the diary booklet. I had some nausea during the first few weeks. I suffer from chronic fatigue and fibromyalgia as well as pain from vertebral fractures, so I don't know if it causes fatigue, which affects a lot of people who take it. I take a calcium supplemnt (low dose) vitamin D3 and vitamin K2-M7. I am going to ask for a DEXA at the yearly point. The consultant has not said I should have blood tests to check my calcium levels whilst on Forsteo, I have heard that they should be done so might chase them up on this. I will have to go on to something when I've finished this course and it may be the bisphosphonate infusion, which is what my consultant wanted to put me on but I asked for teriparitide instead and he obliged. My GP questioned the cost of my treatment - he obvioulsy doesn't think I'm worth it - thankfully the consultant prescribed it so it doesn't come out of my GPs practice's budget - they prefer to keep the money for themselves than spend it on their patients!

Nuthatch profile image
Nuthatch in reply to MollyStark

What is it with GPs?? Mine also questioned the cost of Terrosa and as you rightly point out it’s nothing to do with them. They’ve had zero interest in me in any case. Though tbf I’ve had no follow up from the consultant or his clinic either.

JGBH profile image
JGBH in reply to MollyStark

Hello Molly Stark, thank you so much for contacting me. How long have you been on this treatment? Do you get any headaches, dizziness and lack of balance?How long did the nausea last for? Could you eat, and did you find you could not eat certain food? The injection per se does not worry me because I already do an injection for my rheumatoid arthritis every week and B12 injections every so often. It's just the drug that concerns me. It has some pretty nasty side effects, then what to do after 2 years? It means being on such drugs for the rest of our lives... I cannot use bisphosphonates and they are not great either. In truth, there aren't any drugs to help us for osteoporosis....

I had Prolia before and had to discontinue it after 4 years because I needed intensive dental treatment and then 2 total knee replacement operations. the shocking thing is not a single doctor, GP or consultant, warned me about the rebound fracture risk! What are they paid for indeed? They don't care, we are treated like human guinea pigs. Because of that neglect I now have a fractured pelvis (insufficiency of the sacral alar and compressed L1 vertebra)... have been in atrocious pain and still now and consequently I have much reduced mobility and am losing my independence, yet I used to be very active. I am 75 but feel at least 10/15 years older.

I agree with you, GPs don't real care about patients, they don't want to spend any money on us at all but keep the money for themselves. Ay my surgery they only work part-time but have good salaries and refuse many treatments and even referrals to consultants. I have to fight with them all the time. It is shocking! Rant over. Keep well.

Having read your profile I can see you have had teriparatide (terrosal) before. How long did you have this for and what side effects did you get? Would you recommend it or warn not to use it? Did your osteoporosis consultant order a bone turnover test and Dexa scan before starting the treatment? My consultant has recommended this for me, after Prolia caused debilitating rebound fractures once discontinued. I am not keen to start another osteoporosis drug that might lead to more problems. It seems once one stops one of these drugs we have to carry on using such drugs for life…

Sunseaandsand profile image
Sunseaandsand in reply to JGBH

At the moment I can not reply but I promise to answer your questions best I can later.

JGBH profile image
JGBH in reply to Sunseaandsand

That would be lovely. Feel free to pm me if easier. Thank you.

Sunseaandsand profile image
Sunseaandsand in reply to JGBH

Hi,In answer to your questions:

Making decisions regarding the bone treatments is very difficult.

I was diagnosed about 17 years ago and in all of that time I still feel that a good treatment is still yet to be found.

I would not reccomended any of the treatments because I have had bad experiences whilst having them, but nor would I warn people off using them.

We have to try these drug's for ourselves otherwise how will we know if we are going to have side effects.

The reason for this being that we are all very different and there are many people who go on to do very well on them, unfortunately I am just not one of the lucky one's .

I n my own experience they do improve bone density BUT when stopping them or coming off them there does seem a price to pay in that the bone loss is greater.

I was on Forsteo treatment for 2 years, my side effects were bone pain, nausea and fatigue.

For me the Nausea was the worst, it never laft me and was like morning sickness that lasted all day and got worse as the day wore on.

I stuck with it because I had fractured and was terrified of having more.

Yes I had all tests done before I began the treatment including bone markers, Dexa scan. I also had the tests repeated during and after treatment.

I had a dexa 6 months after starting treatment and my hips had reduced by 14%.

I was given a number of excuses for this result and was advised to continue on with the treatment, which I did.

At the end of the 2 years I had gained 5.5% in the spine.

From the hips I had lost 6.6% ( so I had regained some of which was lost but still ended up worse than before treatment in the hips)

At the end of my treatment I went against the advice of the consultant who wanted me to begin Prolia.

I had felt so sick and run down and just wanted to feel well in myself again that I refused, saying that I really needed a break from the treatments.

18 months later I was given a further dexa and found that I had lost all that I had gained plus more .

I would imagine hearing this would put many people off trying Forsteo themselves, I think had I gone onto another treatment after the 2 years of treatment ended I would not have lost what I had gained.

As for the hips well I can only tell it like it was.

I have found for me that the density does drop more quickly when having a rest between treatments.

Where these treatments are concerned I don't think there is a right or wrong answer.

I have now spent years trying to find the right road to travel down myself, and when suffering side effects from these treatments it is not a good place to find oneself in, having to go along with the treatment to yet again find you just can not tolerate it.

I believe having to even make the choices has a negative impact on our health, and yet again I now find myself faced with having to make yet another one.

For some of us it's be damned if I do and be damned if I don't.

I hope I have answered your questions and it has helped you in some way.

Take care and please let us know how you proceed with treatments.

JGBH profile image
JGBH in reply to Sunseaandsand

Hello sss,Thank you for your reply. I understand so much how osteoporosis affects one’s health, physical and mental and how difficult it is in finding a proper treatment that would help long term. Unfortunately, none of the drugs available for osteoporosis are actually working. There is no drug to help truly in controlling this disease… So, as you said, we’re damned if we do and damned if we don’t… Had I been correctly informed about Prolia I would never accepted to be a human guinea pig! More so because I had osteopenia at the time, just bordering on osteoporosis…

I feel trapped, like you do, about having another treatment but when serious fractures occur… what can we do?

Perhaps you have seen a post fro Heron NS regarding the black box warning… She knows a great deal. We all need to be informed honestly.

You have my sympathy…

Please let us know what you decide to do. Take care.

Sunseaandsand profile image
Sunseaandsand in reply to JGBH

Yes I have seen you ask about warnings for Forsteo Teraparatide.

You can only have the treatment for 2years in a lifetime.

When the drug was being tested in rats it was found to cause cancer hence that is where the risk comes from.

You can google for the patient information sheet on Forsteo and this will give you the list of side effects.

Like all the other bone treatments it also gives ONJ as a side effect.

JGBH profile image
JGBH in reply to Sunseaandsand

Thanks for confirming my doubt about bone cancer re: teraparitide… I really can’t trust those doctors! Have not been very well recently but will do more research now. I don’t think I will accept to be a guinea pig again! The alternative is not great either… Once I get my bone turnover results (it will take a month because blood has to be sent to a lab in London) and my Dexa scan results (having this on Thursday) then I will have a better idea of what the osteoporosis situation is. Haven’t had any treatment since I discontinued Prolia in 2017. I have altered my diet but am aware that diet alone at this stage might not be enough as well as not being able to exercise.

Sunseaandsand profile image
Sunseaandsand in reply to JGBH

Well please let me know what your results are when you get them and what you decide to do.

Look forward to hearing back from you.

Take care.

JGBH profile image
JGBH in reply to Sunseaandsand

Will do. It’s frightening really… Let me know too what you learn from your research , always important for us all. Take care too.

Nuthatch profile image
Nuthatch in reply to JGBH

The osteosarcoma in rats occurred on much much higher doses than it is given in humans. And it is limited to 2 years maximum. I’ve been on it for just over a year; no side effects and it’s reduced the pain from the fractures. I’m much more active now, can walk the dog and exercise more effectively. Did a 6 mile walk in the Lake District recently. I’m very happy to have been offered it. I did a ton of research before starting it and read a lot of scientific and academic studies particularly looking at side effects and reduction in fractures. I didn’t find anything that worried me about the osteosarcoma risk (I work for the NHS and daughter is a doctor so I had help understanding the studies). Of course you can only agree to something you’re happy with. There are disadvantages to all the OP drugs but I’m much happier with Terrosa than a cheapo bisphosphonate. Not sure what I’ll do at the end of the 2 years - another ton of research I guess!

JGBH profile image
JGBH in reply to Nuthatch

Nuthatch, thank you for your sharing your experience. Am pleased it is working for you so far. Perhaps your mobility was not too reduced before you started this treatment, hence you could walk 6 miles! I am envious. I can hardly walk and the damage caused to my pelvis by the discontinuation of dreadful Prolia has made it difficult for me to stand up for long, do anything, never mind walking. The medical professionals failed to warn me... Now I have to live with this disaster. Naturally, I am extremely anxious now about trying another osteoporosis drug, especially because it is a biologic and I am already injecting another biologic for RA, Tocilisumab... and I am not feeling great, in fact quite unwell and frail. Although the inflammation has been reduced I don't think it is helping me because my ability to walk has got worse since I have started it. Goodness knows what 2 biologic drugs (plus others) will do to my body? I also am hypothyroid, had a thyroiectomy in 1980 for papillary adenocarcinoma, so on thyroid replacement therapy.So you did not have ANY side effect at all? How are you most days? I noticed amongst other effects, dizziness and I already have this problem, plus anaemia which I have too... So I really do not know what I will do. It's such a difficult situation. Am about to have bone turnover tests and another DEXA scan, so I will have to see what the latest results will be. It's going to be a most difficult decision, however. I could not have bisphosphonates but these are not great either.

The problem is what to do at the end of the 2 years... This means being on such drugs for life. Then what happens if one has to have surgery or intensive dental treatment? Usually, one has to stop using the drug for a while, prior and after the procedures. The risk of rebound fractures is forever present. The truth is we don't have any drug to treat or improve osteoporosis. Take care.

Nuthatch profile image
Nuthatch in reply to JGBH

I’m so sorry you’re having such an awful time. I’m fortunate to have learned about Prolia in time to say I would never have it. It’s shocking what a horrendous impact it’s had and still it’s being offered to us. I really haven’t had any side effects from Terrosa. I opted for it because it seems to be the only drug that helps to build healthy new bone rather than preserving osteoporotic bone. I won’t know what it’s done for me till I have another dexa though. I do know I have a lot less pain (the consultant said in his experience a lot of people he treats have found this) and my activity level and quality of life has improved a lot. If you do opt to try it you can always stop if it doesn’t suit. It doesn’t hang around in the system for long (I think) so if you did have side effects I think they would disappear. Some people on here have tried a half dose by doing the injection every other day or only doing 4 clicks on the pen instead of 8 - and seem to have got benefit from it.

I do get how hard it is to make decisions and it makes me angry that we don’t have better drugs. It’s a condition that needs serious money and research putting into it but doesn’t get it because it’s seen as an old woman condition and who cares about them..

I hope you get some resolution and more importantly that whatever you decide it will help with your pain and give you a better quality of life. Sending gentle hugs 🤗

JGBH profile image
JGBH in reply to Nuthatch

Nuthatch, thank you for your reply and kind thoughts.You mentioned stopping the treatment if one has too many nasty side effects. Would that not then lead to rebound fractures once the drug is stopped UNLESS one goes onto another drug straight away? And what other drug? To be honest I am not at all keen to start taking any drug for osteoporosis…. None of them work really. However, the worry of further deterioration and fractures is on-going.

I now have had my DEXA scan and blood test for bone turnover rate done so waiting to get the results. I will have then to make a most difficult decision.

Sending gentle hugs back. 🌺

Thinking of you on your journey. Much love coming your way.❤️🏝️

Teraparatide Hi there,

Here is my story in brief

It can be very daunting but in my case diet and exercise just wasn’t enough to keep osteoporosis at bay.

I had a dexa scan 15 years ago as an early menopause.

Showed osteopenia and started load baring exercise and diet - managed to climb killinanjaro at 50 and trek across 244 miles of Sierra Nevada mountains at 54

All was well so I thought. I then sustained 4 stress fractures in quick succession 2 when my daughter gave me a hug. Had vertibroplasty in two worst

New dexa showed osteoporosis

I started teriparatide 2 months ago with calcium and vitamin D - the daily injections are really easy - you get a pen which is the size of a magic marker, with 1 month supply of drug you attach a tiny needle in a case to the pen and twist the pen to set- inject by pressing a button on the top and take off the needle. Whole thing takes less than a minute

The only drawback is it must stay in the fridge-

I had side effects at first which were quite bad, in bed for first 2 days as very dizzy, bone pain but fractures sore anyway. Over time the effects did subside now I get tired some days( pain does make me tired though)

For me I think it is the right decision- I will be following up with bisphosphonate after 2 years … I figure that is far away and happy for now that hopefully my bones are healing.

Hoping to trek the Pyrenees this summer ( consultant happy for me to go) just have to get my friends to carry my stuff!

I have found a solution to carrying meds without a fridge in the form of a usb powered flask -

I think the key is to focus on what can be done and try to stay positive- on the days I feel rubbish I rest and the days I’m OK I walk- always slow and steady without a back pack.

Hope this helps -good luck but in my case teriparatide is OK

I have an appointment in September to check blood results to make sure nothing untoward is happening

Fingers crossed all is well 😀

JGBH profile image
JGBH in reply to Haze62

Hello Haze62,How long did the side effects last for? I already feel dizzy often and have much pain because I have RA, so I am not sure I could cope with more pain and dizziness…

I am able to go on bisphosphonates once the treatment stops.

Also living alone it’s more difficult to manage day to day. I can hardly walk. Do envy your doing all that walking! I used to walk a lot too but am losing my independence now. Very scary and frustrating!

Incidentally, would you give me the details for the usb powered flask? Sounds so practical.

Hope you carry on improving and have a great time walking the Pyrenees.

Haze62 profile image
Haze62 in reply to JGBH

Hi there For me I injected in the morning - I got up early then went back to bed - first few days felt rubbish but just took it easy and sat on sofa 😀 realised this was not a good plan and changed the routine a bit

I found if I got up and had breakfast and a drink ( orange juice 😀) then did my injection things were much better - I am now. Almost 3 months in and am a bit tired at times and get ringing in my ears sometimes but just sit down, drink some water and it passes but nothing else well worth the benefits for me as really hope bone density increases and get no more fractures

I

My advice is everyone is different so try it and see - but defo give it a couple of months to settle -

The flask is from America amazon.com/gp/aw/d/B07SYZ22...

Let you know how it goes if we can get to mountains

Hope this helps

Haze

JGBH profile image
JGBH in reply to Haze62

Hi, thank you for replying and the information regarding the usb powered flask.Unfortunately I believe the bone density after treatment isn’t really great and the quality of bones is porous, therefore poor. Then one has to carry on with yet another osteoporosis drug… for life. These drugs are not really working… Very difficult when one is having to make such a decision… caught between a rock and a hard place…

Please do let me know if you get to the Pyrenees… good luck. J

Hi,

I competed my one-year course in January 2121. In the US, you must got to a dr or nurse for monthly injections. I didn’t have any side effects. The shots were given in each thigh. I am now on Prolia.

Thank you.It is good that you have completed the course of treatment and not experienced any side effects.

I suppose that you are aware that with Prolia you can not stop it without going on another treatment.

I send you my very best wishes for the future and hope the treatments give you excellent results.

Try looking it up on PubMed an open access medical research site that will have info. I declined to take it, too many risks. And it's made by the company that brought us Prolia, the supposed wonder drug (that wasn't) but now has countless women dependent on it for life.We are all individual but I'm getting results with diet & weight bearing exercise.

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