Forsteo : Hi there. I have just started on... - Bone Health

Bone Health

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Forsteo

Looby60 profile image

Hi there.

I have just started on Forsteo and not sure what to expect .

Is anyone else here on it and any experiences of any side effects or do side effects happen quite quickly if this is the case .

Sorry hope I am making sense with my question and thank you 😊

28 Replies

Hi. I haven't heard of Forsteo but a quick look on Google tells me that common side effects include nausea, dizziness and headache within four hours of administration but that these go away after several doses as your body adjusts to the drug. Did your prescriber not tell you about what to expect in the way of side effects? If not, he or she was remiss in that.

Looby60 profile image
Looby60 in reply to 123-go

Hi thank you for your reply . Yes my nurse did tell me but I also prefer to get opinions from people who are actually on it as well .

Unless nurse has actually been

On it then she is just reading up on it same as me .

I guess what I am trying to find out really is can side effects appear a week or so after starting Forsteo or is it a case of if you are going to get them it will be at the beginning .

Thank you again 😊

123-go profile image
123-go in reply to Looby60

I'm sure that you'll be getting replies from people on the forum who are taking Forsteo so keep looking here for comments.Starting any new drug can feel worrying and I agree that the experiences of others can help us through that.

Hi, I have been on Forsteo (teriparitide) for a year. I experienced nausea sone hours after my first injection and thereafter for several weeks, although this was not constant and it was bearable. I also had a headache that first evening but none thereafter. As far as I'm aware, I don't have any side effects from the treatment now. I do my injection in the evenings as advises by the nurse as this can help minimise the side effects. Everyone is different and side effects can happen at different stages of the treatment but I would try to persevere if you think you're getting side effects. The ROS nurses are really helpful if you have any questions about your treatment. The very best of luck to you.x

Looby60 profile image
Looby60 in reply to MollyStark

Thank you so much . This is very helpful . I’m a bit concerned as seem to be having bone pain . Having said that the pain seems to be from T12 thoracic ( waist area at back ) this particular fracture occurred almost a year ago they think . It now has 80 percent bone loss in that area so it could be from that alone I guess .

Thank you will contact ROS plus my drs surgery re better pain relief.

MollyStark profile image
MollyStark in reply to Looby60

I too had a fracture in a similar place (T11) just over a year ago, along with one at T9 a month before that. I've had at least three fractures, the first being T8 in 2019. They have left me with permanent pain and I find using my arms increases the pain considerably. I have had physio but was unable to do some of the exercises as they involved twisting movements. I'm not sure how well our bones heal when we have osteoporosis, plus there are other issues from spinal fractures, such as nerve and muscle damage.

The only pain relief I had from my GP was cocodamol and then morphine. In all honesty, I did not find them effective when the pain was at its height. I now take cocodamol only when the pain is unbearable, as it does at least relax me. I had no help from my GP practice and it was pretty clear they weren't interested. But the ROS nurses are excellent. They will spend as much time as you need talking you through the treatment and pain relief.

Looby60 profile image
Looby60 in reply to MollyStark

You poor thing I do feel for you . Very similar to although fractures in different places . GP to be fair has been helpful and also pushed for MRI 2 months after first one which showed further fractures plus height loss . He then pushed for the elusive dexa scan which had not been forthcoming . TScore was minus 3.8 . So then suddenly within 2 days I had osteoporosis nurse visiting me lol . Might be something to do with complaint re acces to dexa scan and operators awful attitude.

MollyStark profile image
MollyStark in reply to Looby60

Thank you. You're lucky to have a good GP. I have recently changed GP practice because I was verbally abused by a GP at the old practice. Despite the practice agreeing his behaviour had been unacceptable, he refused to apologise personally! I have yet to see someone at the new practice, but they have been wonderful with my husband and I'm sure responsible for saving his life recently when he developed sepsis and the GP acted quickly.

It is shocking how some healthcare professionals behave. Their bad attitudes can cause such anxiety and stress, which we don't need when we already have pain and ill health to deal with.

My goodness yes . Sepsis if not spotted is very bad and it’s good tgat GP spotted it and got your husband into hospital quickly . I do hope he is fully recovered now .

MollyStark profile image
MollyStark in reply to Looby60

Thank you, he is recovering at home, although it will be a while before he is back to his full strength.

I am in the US, and here it is called Forteo. I have been on Forteo for 8 months. In the beginning I had some random bone pain, and some dizziness, but that went away. I no longer have any side effects. I know someone who took it for two years and she said it really increased her bone density. That is encouraging to me, as my Dexa Scan just kept getting worse and worse before Forteo. I feel it is worth the daily injections as I am feeling stronger on it. I won't have my Dexa Scan until the two year period is over. Then, I will have to go on a different medication to keep the new bone. Most likely that will be Prolia. If you have any more questions, I will be happy to answer.

Looby60 profile image
Looby60 in reply to Greekolives

Hi and thank you . It could be forteo IMight have added the S myself 😊.

I have bone pain but it could well be the vertebral fractures that still give me hassle when they feel

Like it . The pain I have is the same pain so assuming it’s more likely from fractures . Time will tell

No doubt .

Appreciate your offer of help and if I do think of anything will

Holler 👍

Mavary profile image
Mavary in reply to Greekolives

Forsteo put my bone density up from minus 5.5 to minus 4.3 so I was quite pleased. I still had back fractures after stopping it and going on to Denosumab. My hip score is minus 3.4. So yes stick with it. It works . I was lucky and got on with it fine.

Looby60 profile image
Looby60 in reply to Mavary

Thank you so much for your reply . Can I ask how long it took before your bone density went up . Also you mentioned denosumab and the fact you then had back fractures so it didn’t protect your bones ? Or did I read this wrong .

Appreciate your input .

Thank you 😊

Mavary profile image
Mavary in reply to Looby60

You read it right but it’s not what you think. It took the two years of terraparatide for my bone density to go up. Because you can only take it for two years I had to go on something so Denosumab was prescribed. I had the first of the six monthly injections and five months after I had four fractures. I queried it because I thought it had failed but my Consultant said it takesbetween one and two years to work. I have now had a second Denosumab so I can only hope it will help now. I’m due for another Denosumab in January. I couldn’t take the Alendronic acid or that may have helped too. It made me very sick after just one tablet.

Looby60 profile image
Looby60 in reply to Mavary

Thank you again for replying . Can I ask did you fall or did these further fractures just happen .

I think my nurse ( not seen a consultant ) was on about a yearly injection called zolendronic acid . I don’t know if this is better .

Only being 3 weeks into my Forsteo I haven’t really thought about it too much .

Must have been awful for you though as fractures are so debilitating and painful aren’t they .

Mavary profile image
Mavary in reply to Looby60

They unfortunately were spontaneous as was one in my foot. I believe Zolendronic and Alendronic acid is either the same or very similar. I couldnt take the Alendronic as I was violently sick with the first one. I was put on Denosumab. If your stomach can take it you will be fine. My Husband had Alendronic acid and got on with it fine. I’ve got a dodgy stomach anyway so there was no chance I was going to be able to take it.

Looby60 profile image
Looby60 in reply to Mavary

Sadly I have gastrointestinal problems too . It’s a dilemma isn’t it . I hope you improve soon . I must look up zolendronic acid in more detail

Mavary profile image
Mavary in reply to Looby60

If you can take it then it’s ok. I can’t take a few tablets because I suffer reflux and they make me ill.

I have been on Forsteo for 15 months now and immediately side effects were experienced, mainly nausea, tiredness, weakness. Never had side effects with anything ever. Also put on belly fat which is not where I usually accumulate weight gain. Was ready to stop Forsteo but had a bone scan recently and the improvement has been so good that I will stick with it for the 2 years. Good luck.

Hello Looby

I was on Forsteo for 2 years, 2018-20. Had side effects for first few week- mainly nausea, dizzy spells and some tiredness. Nurse suggested blood checks in case of too high calcium levels - after this was checked told to half calcium tablet intake - which seem to sort things out.

Good Luck

Posy White

Looby60 profile image
Looby60 in reply to Posy-White

Thank you so much . It helps a lot hearing different people’s experiences. After Forsteo had ended , what did you then go on to as I believe we have to be on something else or bone loss starts again .

Hi Looby 60I was on Forsteo for 2 years.

My side effects did not start immediately, about a month into treatment I had bone pain this was mainly in my legs.

The worst thing for me was the nausea it went on for the whole 2 years.

It was like morning sickness but got worse as the day went on.

I injected in an evening and for the second half of the second year my husband had to give it to me because the nausea wore me down and I believe was the reason for fatique.

There are many people that sail through the treatments without any side effects.

I am one of the unlucky ones.

I would like to add, please at the end of your treatment take your doctors advice regarding having a follow on treatment.

I had felt so ill for 2 years, but because of having such low bone density and a fracture I was determined to see the 2 years through.

On completing the treatment I wanted a break from all treatments, as you may understand I wanted some time to feel well and have a better quality of life.(I had not done well on Bisphosponates previously so was reluctant to go straight back on them.

Not doing so seemed to be a mistake, I went on to having 2 more fractures and lost all that had increased in my bone density plus more.

I was worse off than before I started the Forsteo and truly wish I had never been given it.

I now have 7 fractures and have been on treatments for the last 15 and a half years.

The secret of the treatments being a success seems to be once on them stay on them.

Many people do very well on them please do not let mine or any other negative experience put you off.

The important thing is to try them and see how we go that is the only way to find how.

I wish you all the best with the Forsteo and any future treatments.

Take care.

Hello again Looby60

In reply to what I went on to next after Forsteo - bit complex I have issues with food intolerances, in my case it means I can not take (most) oral medication so consultant is limited in what I could be offered. After Forsteo I was to have 2 years of yearly infusions of Zoledronic acid. I ended up only having one as I may have had side effects related to the Zoledronic acid or it may have been just one of those things but on my way home from the infusion I started with a minor eye problem (some people get eye problems with Zoledronic acid) the problem lasted for 4 months! Consultant considered it not worth the risk of trying a second time, so re start Prolia.

Best Wishes

Posy White

Mavary profile image
Mavary in reply to Posy-White

I took one Alendronic acid and I was violently sick so they put me on Terraparatide injections.

Hello - I’ve been on Terrosa (which is a cheaper bio-similar to Forsteo) for about 17 months. I’ve had the extra belly fat issue but the only other thing I’ve noticed is that within 30-60 minutes after the injection I have a strong and urgent need to wee! So have to make sure I don’t inject just before going out.. no idea if my bone density has increased though and my consultant seems to have gone into hiding so heaven knows if/when I’ll get another one.

Looby60 profile image
Looby60 in reply to Nuthatch

Thank you for your reply . I have been on Forsteo for 2 weeks now and so far fingers crossed no real side effects .

Hoping that continues to be the case .

I’ve not even seen a consultant lol.

The only reason I know who he is was because Lloyds who deliver my pen told me so .

I do have an osteoporosis nurse though who arranges blood tests and checks to see how I’m doing .

Hi I’m new on here and have just seen you message. Is Forsteo Terraparatide. I had to inject myself for two years with it and had no problems You can only have it for two years as there is a risk with it. I was then put on Denosumab which the Dr gives me six monthly. Five months in and this year I had another four fractures making it seven in all. When I queried it with the Consultant she said it takes one to two years before it works. I hate to think what I will be like in two years.

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