Bone Health

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Sunseaandsand profile image
20 Replies

Wanted to share some information that has recently come to my attention regarding my treatment of Forsteo.

I have been studying all my Dexa scan results which I have kept from the past 16 years.

This has shown something up which has shocked myself and my husband.

I had the full 2 year course of forsteo and during the 2 years had continuous nausea and some sickness. Despite this I did continue with it as I had 1 spinal fracture and wanted to do everything I could to prevent having any more.At the end of the 2 years I felt I had gone through enough and requested a drugs holiday before going on to another form of treatment.

The advice I was given was to begin a different treatment soon after the forsteo ended, but those of you who have had side effects from any form of medication will realize the feeling of, I have had enough!!

I have now come to realize it was a huge mistake on my part by having the drug holiday.

My reports show that from the diagnosis of my Osteoporosis up until 18 months ago I have lost 30% of my bone density.

The reports also reveal that in the time between the end of my treatment with Forsteo and starting a different bone treatment my bone density went down a massive 19% !!!

I had not only lost what I had gained from the treatment but much more.

In my experience this proves that it is vital to follow up with another bone treatment when a 2 year course of Forsteo has been completed.

This may be true with other forms of bone treatments as well.

20 Replies
JGBH profile image

Thank you for the warning. Sorry you have been shocked and so disappointed. I too have serious problems with osteoporosis following my stopping of Denosumab (prolia) injections.

So what will happen now, what treatment are you going to have?

I will be having Alendronic acid infusions but to be honest I don’t really want to do so because none of the drugs used to help with osteoporosis actually stimulate the growth of new strong bones but merely repair the weak damaged bones and often patients still have fractures while on this treatment.

It’s a catch 22 situation really.... we have very little options it seems.

Best wishes.

Sunseaandsand profile image
Sunseaandsand in reply to JGBH

Thanks for your reply.

I am sorry to hear that you have setious problems brought about by stopping prolia.

Can I ask what problems you have had?

I too am in a similar situation to you regarding next course of treatment.

I was due to have Zoledronic acid infusion this year which has been cancelled 3 times in total due to various reasons relating to covid-19.

I have now been told it has been put on hold till March of next year!!

I am concerned regarding what my bone density is now and also what it will be in March next year. By that time I will have been off all treatments for a period of 2 years.

My last treatment was an injection of Prolia in February 2018.

I now have 8 spinal fractures and slowly running out of options.

Not good situations to find ourselves in.

Take care and stay safe.

JGBH profile image
JGBH in reply to Sunseaandsand

Hi SSS, sorry just realised I did not reply to this post or 7 months ago.... However, I think we have now caught up with the present situation and we are not any the wiser... Such a worry, I find it most most stressful as well. x

walk21 profile image
walk21 in reply to JGBH

Strontium ranelate claims to encourage new growth, but it doesn't seem to be prescribed very often. One has to take it every day, and maybe they don't trust us to do that. I had ten years without fractures while taking it, but had a long gap when it wasn't available, and now two more vertebrae have collapsed. SR does interfere with DEXA scan results though.

Sunseaandsand profile image
Sunseaandsand in reply to walk21

Strontium ranelate was discontinued a number of years ago because it was linked to cardiovascular problems. It was then reintroduced but can only be given to certain patients. I was not considered for it owing to a family history of heart disease, but also as you mentioned it does interfere with dexa scan results. I was told they do not give dexa for people on the treatment as there is little point.

It is great that you went so long without fractures.Yet so sad that you were not given another treatment when it was discontinued and had to suffer 2 fractures because of that.

Have your fractures healed now?

How many had you before your treatment?

I hope that things go well for you from now on.

walk21 profile image
walk21 in reply to Sunseaandsand

Of course - I had forgotten the heart was involved. I had four compression fractures over several years, undiagnosed at first. Then tried several meds which I could not tolerate including alendronic acid. SR seemed OK, and with exercise etc. I was OK for a long time. This year I had bad back pain (2 breaks by the feel of it) but did not want to have Xrays so don't really know. I can now walk a couple of miles as long as I take some painkillers in the morning. It has taken 9 months to get here, but I am getting old so don't heal so quickly. It is the problems brought on by loss of height and being very bent that are most distressing now! Thanks for troubling to reply

Sunseaandsand profile image
Sunseaandsand in reply to walk21

You sound to be doing quite well considering everything. I admire and envy you being able to walk the amount that you do. What you are doing is brilliant because we have to fight back and be strong.

I was on crutches for two years but could only walk a very short way and had to keep stopping, it was a very painfull and lengthy process .This was put to an end in January last year when I had what was my 4th fracture.

Yes we know when we have a new fracture, the pain is something we can not forget.

I understand your reluctance to be x rayed, in these uncertain times hospitals are best avoided unless absolutely necessary.

The loss of height and changing shape is somthing that is very difficult to accept.

I do have a spino-med brace which is for support but also for posture. The problem I have with this is that my fractures keep occurring and I am not getting the chance to wear this particular brace!!!

Well all the best, keep on walking, it is the best all round excersise, take care and let's hope there are better times soon to be had by everyone.

walk21 profile image
walk21 in reply to Sunseaandsand

I thank you for your good wishes. I hope you can soon get an adequate painkiller so that you can do a bit more and get stronger. My problems with painkillers would fill too much space, but help with the pain is as important as the op medication

wbiC profile image

Bone density is useful at times as an indication of the likelihood of fractures, especially for those meds that have passed trials showing they not only boost bone density but actually do help reduce the frequency of fractures. The iffy bit about bone meds I feel, is that the quality of added bone density (does it actually 'strengthen' the bone?) is at times open to question.

Of course, we can greatly help avoid fractures through careful posture (maintaining our spine's 'S' curve, by bending at the knees for example, which allows the whole vertebrae to take up the stress of our body's weight and whatever additional stress we're imposing, rather than merely the edges of our vertebrae when we bend/lift with the back).

As to hips, balance routines can be invaluable for reducing the hazard of hip breakage through falls.

8fractures profile image

Thanks so much for this warning. I finish 2 years of Forsteo in May and the consultant said that I should follow up with a zoledronate infusion. My concern is that I actually do get a clinic appointment within a couple of weeks of finishing the injections. The background is that following an "uneventful" 3 year denosumab course with no side effects, I was put on a drug holiday , resulting in 8 spontaneous rebound vertebral fractures. Eventually, I was given a zoledronate infusion, which worked fairly quickly to protect the bones and fortunately suffered no further fractures. 6 months later, after a lengthy approval process, I started Forsteo. It is important to drink plenty of water before, during and after the infusion, to avoid dehydration. After my dreadful experience with denosumab, I'm not happy about having to take yet another drug, but the alternative of a repeat of rapid bone loss is too scary. Meanwhile, I take calcium, Vitamins D3 & K2, boron and other supplements and try to follow an exercise regime. Wishing you well and thanks again for sharing your experience.

Sunseaandsand profile image
Sunseaandsand in reply to 8fractures

I am so sorry to hear of your terrible experience with prolia. It really does not bear thinking about what treatment with prolia can cause.

I hope you are doing well now, I can not believe that you have an exercise regime.

That's marvellous!! Where are your fractures are they in other areas or just in the spine.

You say it was a six month lengthy approval waiting time before you were given forsteo.

That is a familiar story, I was put forward for it by the doctor at the bone clinic.It went in front of the board of consultants and the result was I did not fit the criteria even though my bone desity was seriously low.

The criteria being at that time was a patient had to be over 65 and have at least one fracture, they said no I would have to wait.

The following year I had a fracture and I was then put straight on forsteo!!!

Absolutley criminal.

I hope my post can help people like yourself, it seems we are not told enough about how these treatments really work.

Take care, keep safe and all the best with your future treatments.

8fractures profile image
8fractures in reply to Sunseaandsand

Hi and thank you for your sympathy & good wishes. The fractures, which occurred between August & November 2018 were all vertebrae. I have a line of cemented vertebrae from L1 up to T7 after 2 vertebroplasty procedures. L3 & 4 (also 5 according to one scan) also had less serious fractures and healed naturally after a while. A dexa scan Dec 2017, after 6 prolia injections, showed spinal value -1.9 (osteopoenic) which is why they put me on a drug holiday. What was not foreseen was the rapid plummet in bone density after Prolia discontinuation - the next scan in Dec 2018 indicated spinal value down to -3.7 and this, together with my fracture history qualified me for Forsteo, although my case did have to go before a special board, like you. It didn't actually take 6 months for the approval to come through. I think they ok'd it after 4 months. As I'd had a zoledronate infusion in Nov 2018, the doctor advised waiting 6 months before starting Forsteo in May 2019; this also provided a longer interval to get the Prolia out of my system. By now, I'd been transferred from the local hospital's rheumatology dept to the area "centre of excellence" specialist osteoporosis clinic. They referred me to an excellent specialist physiotherapist who came to my flat. She really knows her stuff and gradually built up an exercise programme tailored to my capabilities. Many of the exercises are similar to Pilates which I'd been doing before all this. I still "see" her once a week on Zoom and do some of the exercises on my own at least every other day. Apart from that I try to walk and do some stairs most days. I gradually managed to cut down on painkillers although do take the occasional co-codamol after a particularly difficult day. In early May I received a text from NHS England advising that I was classified as "clinically extremely vulnerable" to covid-19 and telling me to shield. I thought that this must be some mistake as, apart from the fractures, I had no underlying health issues. But the hospital had advised that the multiple thoracic vertebral fractures, which resulted in kyphosis (hunched back), had also caused reduced lung capacity - who knew? At least I was put on the priority list for supermarket delivery slots! Hope this hasn't been too boring for you to read. Sometimes I just have to rant a bit. I need to warn others about the perils of Prolia.......

I'm also extremely sorry to hear how you have been treated. Women of our generation are like guineapigs to the pharmaceutical industry & medical profession I fear. I wish you all the best for the future.

Sunseaandsand profile image
Sunseaandsand in reply to 8fractures

Thank you for sharing your experience, to have so many fractures at one time and under those circumstances must have been terrible for you.

I suppose I at least know when I have had another fracture, being familiar with the pain.

It is so uplifting to hear of your successful sugery and the support you have had from the hospital. The physiotherapist's at my hospital tell me there is no help they can offer.

I think it is all down to the luck of the draw regarding which part of the uk we live in. It really is essential to have good support in place to have access to everything possible to help, and it sounds to me like you have recieved excellent care.

I too have been shielding and am also classed as extremely clinically vulnerable.

I have had a problem with the lungs for a very long time which makes me succeptible to chest infections I had 2 episodes of pneumonia in the past. My lungs are emphsmatic (as in emphysemya) but my condition is controlled with inhalers, flu jabs and had the pneumonia jab a number of years ago too.

They did many inestigations as to why my lungs are this way and always drew a blank saying it is a total mystery.

Another way to describe my lungs is that they are hyperinflated so they press down on the diaphram and squash the heart ( the latter I am told is not a problem though.

You can well imagine now that everything is squashed down even more with the fractures causing loss of height and the kyphosis it is causing more problems especially with eating.

I feel it is absolutely right to bring our bad experiences of these treatments to the attention of others, although it saddens me to know that mistakes are still happening.

Those of us who have had the treatments are the ones with the best knowledge of them, I wish I had known some of things before that I know now. I really do.

Your reply was interesting certainly not boring!!

Thank you once again. Hope to hear of good results from your next Dexa.

Take care.

RunRabbitRun profile image

I’m so sorry to read this.

I find your posts so helpful in this minefield of information.

I hope they offer you some help or new treatment soon.

Take care

HeronNS profile image

In other words, just as bad as the now well-publicized Prolia problems. I do wish the drug companies would quit foisting their expensive and dangerous treatments on vulnerable populations. Also, that the regulators were a lot more careful. Also that doctors and Public Health gave patients the same guidance re maintaining bone health they give us regarding quitting smoking, signs of stroke or heart attack, cancer, preventing type two diabetes.

Sunseaandsand profile image

Hi HeronNS

Yes what you say echoes my own thoughts.

I am really questioning at the moment just what part the one prolia injection has played in my recent 3 fractures. As you probably remember I refused any more treatment with prolia because of the side effects I was having.

My second injection should have been given in August last year yet the consultant told me it would not be completely gone from my body till the November.

If I count from then, I had a fracture May this year another in July and a 3rd at the start of October. Too many too close together.

Perhaps this may imply that for people who have already fractured and are at high risk even one shot of prolia can cause rebound fractures if not followed on with another treatment.

Something I will never know.

I do so often wonder how my bones would be today if I had refused treatments from the very beginning.

There is no doubt in my mind that once on the treatments there is no safe way of getting off them.

I am so in agreement with you, the public are left in so much ignorance around osteoporosis, the doctors are told to dish out the treatments and that is the start and end of it.

The focus as you say is put on all the other diseases never a mention of osteoporosis.

Osteoporosis is a terrible crippling disease that the public need educating on.

Snowybear profile image

Hi. I’ve just started on Teriparatide a few days ago. I know sorry to learn you had such bad side effects, such as nausea. Do you remember if the side effects started immediately you began treatment or whether they took a while to start? I’ve been nervous about starting it because of possible side effects but am fine so far after a week. Thanks

Sunseaandsand profile image
Sunseaandsand in reply to Snowybear

Hi Snowybear,

Forsteo seems to be tolerated well by many people but for some ( myself included ) it does cause side effects.

Try not to worry as it is possible you will be one of the lucky ones and do really well on it.

Although it is some time ago now since I was on the treatment, certain things stick in my mind.

When I first began the treatment I was ok, the nurse rang me a couple of week into the treatment and asked if I had any bone pain, at that time I had not and when I told her I was a bit stunned when she said oh you will get it because it is one of the main side effects.

I did get bone pain which probanly began a couple of months into the treatment I can not be sure though.

The pain was im my legs and was very troublesome going up and down stairs.

My mobility was impaired by it but not in a way that I could not walk.

The nausea came on gradually and got much worse, I felt exhausted and by every evening felt so nauseated I would just want to get into bed.

It got to the stage where I could not inject myself and my husband had to do it for me.

Despite this I continued and completed the 2 years of treatment.

I was told by the nurses later that the sickness is the main cause of patients stopping their treatment.

Once the treatment ended my side effects disapeared and what a relief that was.

The downside was I could not face going on another treatment straight away and my density dived and I had 2 more spinal fractures.

PLEASE do not let my experience put you off in anyway whatsoever.

I have not done well on the other bone treatments either, these treatments have caused all types of problems for me.This as you will understand leaves me in a compromised situation regarding where do I go next.

Take care, don't worry, you are syptom free so carry on and enjoy.

Please let me know how you progress.

I wish you all the best for the future.X

Snowybear profile image

Hi Sunseaandsand.

Thanks for your reply and all the details of the treatment. I am having Movymia which is used instead of Forster apparently but is Teriparatide the same.

One week in and I’ve no symptoms but I’m nervous re the nausea. I really admire you for your stoicism in seeing the 2 years through while feeling so nauseous- I’m not sure I could cope with it as well.

I’ve not had any treatments before as I don’t like the sound of them and how they work and don’t know what I’ll do if I manage 2 years on this and then need something else. I know it’s the best treatment to be on and builds new bone and is especially good at filling the holes caused by a spinal fracture such as I had. Will have to wait and see, isn’t strontium now being offered again as a treatment?

I’ll keep in touch with how it goes and all the best to you as well on the next steps.x

Sunseaandsand profile image
Sunseaandsand in reply to Snowybear

Hi thank you for your reply.

Yes it was hard to continue with the treatment and many times I felt I could not continue and wanted to give in.The fear of another fracture kept me going.

I had been on Ibandronate infusions for 3 years prior to the Forsteo which had caused me so many side effects, some of which were serious.

Consultants in Dermatology were convinced the Ibandronate was responsible for the worst of my problems, but the Doctors in the bone clinic disagreed.

In the end they reluctantly agreed to discontinue it and by doing so it was proved that the Ibandronate was the cause of my problems.

I then went on to having my first fracture and was given Forsteo I think the reason I stuck it out was my fear of another fracture.

Now I have 7 spinal fractures all without trauma and have had just about all treatments on offer, and still losing bone at a much faster rate than normal and no nearer to finding out why.

I was so desperate for help that in 2019 I even put myself through 2 more infusions of Ibandronate.

I must have been crazy!!!

Needless to say one infusion was too many but two.

It is surprising what we will put ourselves through when we are desperate.

I think Strontium is being given again but is not a popular choice by the specialists owing to the that correct dexa scan readings can not be achieved because of it.

The hospitals will not give dexas if Strontium is being used.

Our choices seem so limited, and there has been nothing new on offer in the 17 years I have been attending hospital with Osteoporosis.

I will be thinking of you and wishing you well with the treatment.

I hope I will hear that you are doing well without any side effects.

Take good care of yourself.Xx

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