Hi, I nearly finish my 18 months forteo injections my rheumatologist wants me to move onto prolia which I have declined
Needless to say he is not happy with me does anybody know how long after you finish forteo injections you have before you need to move on to another medication
I was told if I don’t take prolia then I will loose any good that forteo may have done
I had appointment to see my rheumatologist in June to decide what next as I finish forteo injections the end of March
Now they have changed my appointment to October I think my rheumatologist is not interested now that I declined Prolia
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Nemone65
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I am given to understand that once finishing the forteo injections you should go straight on to another OP drug to avoid fractures. I thought you can have the forteo injections for 2 years.
In the Royal Osteoporosis Society information it says: "Teriparatide is generally prescribed for a two-year period, so you need to be happy it is the right option for you". I wonder why you are only being offered it for 18 months.
I live in England and am on a two year course of Forsteo - I called ROS because I have a consultants appointment next month - last year it was suggested I go back on Prolia (6 monthly denosumab injections), when the 2 years ends this June. I wanted to find out other options before I went to the hospital appointment.
I am very worried about going back on to Prolia so wanted to find out about other medication. I understand I do need to go on to 'something'
The ROS Helpline specialist Nurse was very helpful do call them.
You asked if I had already been on prolia and if I had any side effects.
I was on Prolia and had excellent results, in 5 years moved from Z scores of - 2.8 range to + 0.3. The first 3 injections I had a mild urinary concern each time within 48 hours of the injection, this stopped after I increased the amount of water I drunk not just on the day of the injection and for 2-3 days afterwards but for 3-4 days before and 2 weeks afterwards with a general greater increase. I stopped the injections in June 2017 at that time no one medically in Europe took on board Rebound Fractures. It was thought a good idea to take a break from the treatment and because as such I no longer had OS (Z score +0.3) I was not put on an alterative medication. I ended up with 8 spinal rebound fractures, 4 months after the last Prolia injection hence going on to Forsteo.
I 'm mainly worried if I re start Prolia it seems at the moment to be a life sentence, which if I live to the age my Mother did I'm looking at 30+ more years of Prolia???? I'm also worried about the "what if situations"....if for some reason I 'm given the injection on time, am I be likely to be at a greater level of risk for a second lot of rebound fracrures? etc.
Your reasons are my reasons for not wanting to re start!
The fractures where in my spine. I was very physically active, had lots of outdoor hobbies and a very active job, I now use crutches to walk short distances and use a wheelchair for longer journies, I am no longer able to work. Some days I find it hard to stay positive, but you can always find someone worse off!
I think it's worth exploring all other possibilities and talking about your concerns. I know it is only a small number of people who do have promblems with Prolia but they have been life changing for a number of us!
Go with your gut feeling. If you have done the reading and heard the result of some who have had bad reactions. I turned it down, and my consultant became quite unfriendly and discharged me there and then!
I had spinal fractures after a fall, and then with spinal stenosis had an op, laminectomy 4/5, and also vertebraplasty to the fractures, so the lower back is stronger, it’s now higher up is painful. Such is life!. I cannot walk far, but just adjust my life accordingly, and try to keep positive.
This article suggests that a bisphosphonate is the option after teriparatide. Given what we now know about denosumab I would have thought a bisphosphonate would be by far a safer choice. Have you called the ROS?
And I would push for a much earlier appointment than October for follow up. You should not apparently be punished because you are only trying to make the right choice for yourself. It's your body, your bones.
Hi, I am from the UK and was given a 2 year course of Forsteo.
I have 4 fractures of the spine and as a result of the 4th one and other spinal problems I am now almost totally reliable on my wheelchair to move around.
I can understand your refusal of Prolia, but not why you have not been given a choice of which treatment you can have next.
Bisphosponates are usually the preffered treatment when Forsteo is completed.
I can not stress enough to you that after completing Forsteo you must go on to some other form of Osteoporosis treatment.
When I was on Forsteo I was given a Dexa scan after the first six months of treatment.
This showed my hips to have actually gone down by 14.7 % at the end of the 2 year they had recovered a bit but were still down 6.6% overall.
My spine had improved by 5.5% over the 2 years.
I was then given a drug holiday for 12monthsand given another Dexa after the 12 months.
This then showed my hips had decreased by 8.2% and my spine 14.1%.this was only in 12 months!!
I would not want anyone to experience what I have so PLEASE push whatever buttons you can do not wait.
The ROS nurses may be able to help you further.
If it were me I would be phoning the consultants secretary and asking for something else to be put into place for when the Forsteo comes to an end.
Hi I have been on prolia for 3 years but my problems only started November 2019,:I have now been diagnosed with osteocronis of the jaw and it is very painful worse than my rhumatoid arthritis but the rhumatolgist has said that I can't have any other bone medication till I have a dexa scan in December I am terrified in case I start getting fractures. I am also in the uk
Hi, I am so sorry to hear you have Osteonecrosis of the jaw.
You must be in a lot of pain and discomfort.
I would think that after being on Prolia for 3 years your bone density will have increased a lot.
It is only natural for you to worrying about having rebound fractures anyone else in your position would feel the same.
From looking at the research that has been done on Osteonecrosis of the jaw it appears that it is usual not to give bisphosponates once it has been diagnosed.
Treatments are usually stopped until the problem with the jaw have been addressed.
However if the risk of fractures are great then in some cases patients will still receive a different form of Osteoporosis treatment.
What I don't agree with is that your Rheumatoligist has said you must wait for December for a Dexa scan before you can have a different treatment.
We are hearing a lot on hear about Rheumatologists that do not seem to have the knowledge regarding the Osteoporosis treatments.
Is it possible you could see a Doctor at a bone clinic?
Would it be possible to pay for a private consultation.
You really do need to see someone who at the very least will explain your situation to you and give you the different options.
The ROS nurses I feel would be able to point you in the best direction.
They are very helpful and extremely understanding.
I do not think your GP will be able to help as in my own personal experience if under a consultant at a hospital the GPs will not want to tread on anyones toes.
They will usually say to get in touch with your consultant which for you does not sound like the best option.
Take care and I really hope you can get to see someone regarding your situation quickly.
Hi thanks very much for your reply i am going to hospital next week for a ct scan on my jaw i will see what they say i think the only treatment for osteocronis of the jaw is antibiotics and mouth washes,but i really shouldn't be taking antibiotics all the time due to my kidney disease. Why do they give medicines out that cause something else i was on aledronic acid before i wish they had left me on that but prolia by passes the kidneys i think Hope you are keeping well
I hope when you have the scan of your jaw that they will be able to help you more.
It will be the best way to find out exactly how things are.
I too wish they had kept you on Aldronic acid, I did more research on Prolia after my lst and only injection of it and found out that there is a higher risk of onj in patients who have previously been treated with bisphosphonates before Prolia.
We find ourselves in such difficult situations, I have found that every time I fracture I can usually be talked into taking anything, being in so much pain makes you so vulnerable you will agree to anything.
Good luck with your scan and please let us know how you get on.
For now take good care and try very hard not to lift, carry, bend , reach, twist or turn.
You can ring the specialist nurse on the UK free helpline number 0808 800 0035 as they will be able to help you with this.
I have received three IV denosumab (Prolia) so far. Can I ask why you aren't keen on taking it? I might well need to rethink the drug if there are severe side effects. I might add my consultant has not alerted me to any serious adverse effects, but I'm keen on knowing more.
When you stop Prolia you have to take another drug to prevent rebound osteoporosis. So might as well skip that step and go right onto a bisphosphonate. Bisphosphonates actually stay in the bones indefinitely so although they aren't perfect (far from it) they do not put the patient at risk of rebound as denosumab does. I'm not sure whether discontinuing teriparatide puts one at risk for "rebound" or whether it's more a question of preserving any improvement. The denosumab rebound can actually lead to osteoporosis worse than the original condition being treated for.
I took Forteo for 24 months. No problems. Then put on Prolia. When I had to stop the Prolia because of constant aching in my arms and legs he didn’t tell me about the rebound vertebral fractures and I had 7 over the next two years. I would take something like Reclast if I were you. We are all guinnea pigs. They are just shooting all kinds of stuff into us and they don’t know all of the complications yet.
Thank you, Nemone65. I do suffer from constipation/IBS and have done for years, but am not sure that this has been exacerbated to any appreciable degree by Prolia. I do feel slightly under the weather and achey after each three-weekly treatment, but this is not severe and is nothing compared with the bone and nerve pain that I am constantly trying to combat. I shall be asking my consultant for a more detailed explanation of what the denosumab might be doing to me inside when I see him next week. Thanks for alerting me to this - and I hope you identify a drug or therapy that's right for you.
Hi I only had one injection of Prolia last year and unfortunately had bad side effects from it.
I have to say though if I had not had side effects from it then I would have continued with it.
The consultant at the time told me if I tolerated it well I would be kept on it indefinitly.
I have experienced both sides of the coin, I have 4 spinal fractures, 2 in the thoracic and 2 in the Lumbar which is not a good combination, I know the pain and disability that comes along with the fractures and live in fear of my next one.
I have also suffered the side effects of the treatments and if I am totally honest with myself and others I envy the people who manage the drugs without side effects.
I do and have for many years suffered with IBS and Chronic constipation which has to be managed with medication prescribed by the hospital.
Prolia did exacerbate this problem for me but if you can be given something to help with the constipation then It may be as well to carry on with the Prolia.
As everyone has already explained to you it is vital that on stopping prolia you MUST have a different form of treatment to prevent rebound fractures.
Thank you for your response - and I'm sorry that mine is so delayed: I have not had the best of times just recently. I did discuss your guidance with my oncologist, who remains convinced that Prolia is the best option in my particular case. I will insist on a substitute being offered to me in the instance that Prolia is withdrawn at some time in the future (although I cannot see this happening unless my calcium levels decline drastically... they are borderline atm and oral calcium & vit D3 have been upped).
Hi, nice to hear back no matter how long it takes!!
For some of us we have to go along with our consultants advice, they are the ones who know about all our other health issues no matter how big or small.
Hopefully you will do well on the Prolia and if it is withdrawn I am sure you will be given a different treatment in place of it.
The decisions we have to make over different treatments cause much stress and drain our energy, energy that is much needed to fight our illnesses.
Once the decisions are made we can then put our energy to good use again.
Yes I agree we can feel at a disadvantage sometimes and overwhelmed by it all.
If he has been looking after your health for sometime then he must have good reason to start you on Prolia.
If you are able to have the opportunity to talk once more before the treatment, perhaps you can ask him for reassurance that if Prolia does not work out right for you then what will be put in place for you to have.
Forsteo works good on the spine but does not give such good results with the hips.
The trouble is I have only seen him twice I can truly say that it’s his way or no way
They moved my appointment from June until October
I have tried to contact him via his secretary and nurses as I finish forteo in the beginning of May
So was going to try and discuss my other options
So I be off forteo for at least 5 months before my next appointment
That’s why I am concerned about taking prolia incase it doesn’t agree with me and I am left again without appointment or anyway of getting help to get me off prolia safely
When you eventually do see your rheumatologist point out that what has just happened with this appointment demonstrates exactly one of your concerns about starting prolia. Also, what about that question I asked where you have to take another med after prolia anyway, so why not skip the prolia step and go directly onto one of the bisphosphonates, which we know can be stopped abruptly if need be with no concerns about rebound. I believe you should take something for some limited period of time to preserve the gains from forteo. Meanwhile, start doing the natural stuff some of us bang on about from time to time - can't do any harm and you will be ready to be drug free after whatever the recommended time is on a bisphosphonate after forteo. Good Luck!
Your story is similar to my story but in reverse. I had three prolia injections six months apart, and needed to have a broken tooth extracted. It would not heal and kept getting infected - I had developed Osteonecrosis of the jaw, a "rare" side effect from Prolia so they took me off it.
It has been almost 22 months since my last injection. last August my bone reabsorption rate was high signaling a fast turnover and weakening of my bones - thus the predicted "rebound effect" from stopping Prolia without starting something else.
They want me to start Forteo since it does not have the side effect of "death of the jaw", but I have refused since the Forteo's possible side effects include depression, back spasms and a very slight risk of bone cancer...that was the deal breaker! I worry about fractures, yet believe this negative effect will pass. Once you start taking these drugs they have you for life, or at least insist they do.
I don't think there is enough research to know what happens in the future - we are the research! I plan to tough this out until August when insurance will pay for another bone density test. I don't know what I will do at that point. I am hoping just exercise, calcium and Vit D will strengthen my bones. Good luck to you. There are no easy answers.
I couldn’t agree mor with you, that we are the guinea pigs in all this, when I turned down the prolia , the consultant was really unfriendly about it. Speaking to his nurse outside the room I said I had heard about all the side effects, and she actually agreed that yes that was the possibility. Why can’t the consultants spell it out? Good job we do our own reading isn’t it. Like you I do feel frustrated with the endocrinologist.
I was told the same, tried Prolia with 5 injections . Was tired of feeling bad, so stopped. The docs do not like this, but I refuse to take it. Now prescribed Fosamax , which unable to take as calcium and D levels are too low. It has been 3 months off everything. I have decided to live life by bettering my diet and walking. We will see. I am sure when I go in for my April appointment I will get an ear full for sure.
Just to reinforce what others have written. You are right to decline Prolia (Denosumab). I completed a course of 6 injections under hospital supervision, then was ill-advisedly put on a drug holiday as Dexa scan results appeared good. They were going to review me after a year but I suffered the first of 8 spontaneous rebound vertebral fractures 5 months into the drug holiday. No-one should start this drug without a planned exit strategy. By the way, I had no history of fragility fractures, nor did I have any side effects while on the Prolia course. I'm now a few months into a 2 year course of Teriparatide (Forteo) injections. After that, I believe I'll have a Reclast (Zoledronate) infusion but I really don't want to be on these indefinitely as I understand that there are risks of atypical femoral fractures and also micro fractures . If I could, I'd like to try managing the osteoporosis with weight bearing exercise, diet and supplements but anyone in the medical profession to whom I mention this idea is very disparaging and discouraging.
Thanks for your reply . Yes I have done research too and I think we know more than the doctors do ! I will try and keep on taking the injections but I can’t imagine having this pain for another twenty one months. I had nausea for the first two weeks or so but that’s better now. I guess everybody is different. Hope I don’t gain weight . Have you finished taking them
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