FORTEO : Hi Has anybody used Forteo... - Bone Health and O...

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Nemone65 profile image
18 Replies

Hi

Has anybody used Forteo and if so did you have any side effects

I am in the uk and have osteoporosis of the spine I have fractures of the spine which I had kyphoplasty surgery

I have been on Forteo for 5 days now but I am more scared of side effects of this drug and loosing my hair

Thanks

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Nemone65
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18 Replies
Kaarina profile image
Kaarina

I have not been prescribed this but to my way of thinking at the moment it is the best of the OP drugs offered. Only problem is that it can only be taken for a maximum of 2 years and then one has the dilemma of what to continue with afterwards as this is vital, as I understand it, or any good work taking Forteo has achieved will be undone. Also this drug is not given out too readily until one has usually been through the other medications and come off them for whatever reason. I believe it to be cost.

Elizabeth65 profile image
Elizabeth65 in reply to Kaarina

Hi I have no idea what they will put me onn after the two years but assume it will be bisphosmate powders. But I'm trying to be positive eventhough I feel every bone in my body is hollow and creaky that it will build new bone over two years and make me confident in doing what I took for granted to date. I'm taking Glucosamine and Omega 3-6-9 daily and just pray that over the next year that I will return to normal.

In Ireland it costs about 6000 Euro per annum and I was told that the UK do not issue it as freely as in Ireland. As I had two fractures as a consequence of coming off Prolia Injections for dental reasons then they had to prescribe Forsteo injections. They said my Dexa showed - 2.5 and normally prescribed for those worse than 2.5 but fractures changed their minds.

A week before fractures I was thinking of climbing out bedroom window to clean the Velux windows as I was so nimble and always painted house, weekly gardening...danced like a ballroom dancer and spent my life in high heels. How my life has changed ...!!!

Kaarina profile image
Kaarina in reply to Elizabeth65

Aw, I am sorry to read your story. That Prolia med has a lot to answer for. So many on here have posted about how this has drug has ruined their lives.

I drink kefir, take K2, boron and magnesium supplements and eat a lot of sardines. I am also prescribed Vit D via my GP.

High heels went some time ago for me, as my balance is not so good now.

I wish you all the very best. :)

AnnieW55 profile image
AnnieW55 in reply to Kaarina

Hi Karina. Can I ask which magnesium and K2 supplements you take please?

Just getting to grips with bone health after a stress NOF break whilst running a marathon (fixed with a dynamic hip screw). I thought I had a good diet and training regime in place - appears I may have been wrong! Anyway I too drink kefir daily (and have it with turmeric, cumin, chia seeds and black pepper). I have also just taken delivery of Boron tablets and this week started eating sardines. Dr has also prescribed calcium with D3 tablets.

Kaarina profile image
Kaarina in reply to AnnieW55

I was prescribed calcium and vitamin D by the GP as this is what all GPs do! I really did not like taking them so went back and had a chat about my daily diet. He gave me a very basic form to complete whilst in the appointment and we both agreed that I had enough calcium in my daily diet and he now only prescribes me with Vitamin D3 capsules.

At the moment the Magnesium Glycinate I take is from Piping Rock and the Vitamin K2 from Nutrizing.

I am sorry to hear about your break. What a shock for you. Look after yourself. :)

AnnieW55 profile image
AnnieW55 in reply to Kaarina

Thank you.

That’s helpful - a lot of research to do!

Elizabeth65 profile image
Elizabeth65 in reply to Kaarina

Hi I replied to another re Ideos combined calcium and Vit D plus Omega 3-6-9 and High Glucosomine tablets. I thankfully feel I'm improving just 2 months now on Forsteo...keep positive and of course do the physiotherapy floor exercise.....as prescribed by physio...not all gym exercisesare good for those with osteoporisis.

Fracturegirl profile image
Fracturegirl

I took Forteo for the full 24 months and regained enough bone density to move from diagnosis of osteoporosis to osteopenia. The only side effects I had were some muscle spasms behind my knees which were controlled with muscle relaxers. It’s the only drug on the market that actually builds bone. I didn’t lose any hair. You must also get and keep your D3 blood level at a minimum of 30 and of course take your calcium and magnesium supplements. The sad thing for me was that the doc put me on Prolia in order to maintain my bone density that I had built after the 24 months were over. I couldn’t tolerate the Prolia because of constant debilitating pain in my legs and arms. After discontinuing the Prolia two years ago I have had 7 vertebral fractures and lost all of the bone density that was built with the Prolia.

Nemone65 profile image
Nemone65 in reply to Fracturegirl

Hi

Thank you for your post

I feeling more confident about this drug now

So sorry you had more fractures I hope you managed to find a treatment that you are able to take again

Mamaandme profile image
Mamaandme

I took Forteo for 4 months in 2007, but I was travelling extensively, and stopped after 4 months, due to having to keep it refrigerated. I constantly had either bruises on my tummy or red welts on my upper leg where I'd injected. I had no idea I could never take it again!

I had previously been part of a 3 year study, double-blind, which meant that the doctor also did not know results of bone density tests, which I got often. Eli Lilly said at the end, they'd reveal results: they LIED! So I had no idea how I was doing. My doctor said she would do one and see how I had done. I had either been on a placebo or the test drug did not work!

I've taken Fosamax since, and now doctors recommend Prolia, but I am afraid of the side effects. I have been in the T-score range of -3.3 to -3.9 (now) since about 2003. I am taking powdered eggshells (dry, then grind to powder.1 tsp. per day) and Calcium and Vita. D3. I am not taking K2, but I do want to. My doctor seems pretty uninformed on all of it, but he says I need to take Prolia. Not happening.....

Kaarina profile image
Kaarina in reply to Mamaandme

If you were on a placebo for Forteo of vice versa but stopped after 4 months then as I understand it you could take Forteo for a further 20 months if your doctor would prescribe it. I say this because I hear that you can stop and start Forteo but can only take it for a maximum of 24 months.

Mamaandme profile image
Mamaandme in reply to Kaarina

No, the placebo (we assume) was for a drug, with no name, BZ something, which was never brought to market. The possibilities were 25% Evista, 25% new drug, 25% placebo and I can't remember 4th. That was 15 years ago. Since Eli Lilly never gave dr or me the results and never revealed what I was taking, my doctor did a viewable DEXA scan, finding that in those 3 years my density had deteriorated. We concurred I had been taking either the failed test drug or a placebo. Three years wasted! I chanced it for economic reasons...no insurance as I was pre-Medicare age. When 1st diagnosed about 20 years ago I was taking Evista, never had another DEXA until the 3 year double-blind test market. Price of Evista skyrocketed, so I discontinued. The same doctor offered me a special Forteo aid at $25 per month. I went to the classes to learn how to inject. Elizabeth65, I was doing it as you state, pinching fat, etc. I do not remember if I was taking supplements then. I started learning more after shattering wrist on Nov. 1, 2016, with an unusually long therapy after.

Now, I am on nothing, with no idea what to do, other than diet, supplements, exercise. I've been on supplements since last DEXA Nov. 2016, but last one on Nov. 13, 2018 shows deterioration. I have definitely been told I cannot resume the Forteo after stopping. That was by rheumatologist.

Considering my L1-L4 T-score has remained in same territory for 15 years through it all, I'm still refusing Prolia. My poor uninformed Mom was injected with NO info on side effects, and never told them, yes, she wanted it. They assumed if her insurance approved, she would get it. She did, but has suffered greatly. I am the only one who thinks her current pains are from Prolia. Her doctor scoffed and ignored, but I do not think he even knows!!!! Nor does mine.

Kaarina profile image
Kaarina in reply to Mamaandme

I am very sorry to read your posting.

Elizabeth65 profile image
Elizabeth65 in reply to Mamaandme

If you are taking Aspirin or warfain daily you will bruise very easily. I'm size 10 with no fat except a little pouch around my navel. I pinch the 2 inches of fat, take a deep breath and just jap injection in and although I'm on Nuprin..aspirin daily I don't bruise. Try pinching a fat area before injecting. You have to locate a different area around your stomach like a clock system. Take over counter or health food supplements and sardines and calcium in tablet form with Vit D...better than foods with calcium and you need the Vit D to get calium to work....plus lie 15 min daily in sunlight of expose your arms while indoor to daylight for 15 min. Good luck.

Mamaandme profile image
Mamaandme in reply to Elizabeth65

See my reply to Kaarina, above. I did inject Forteo as you state. I went to a class on how to inject it. I was 20 years younger than any of the other ladies in the class! Was not then, nor have I ever, taken daily aspirin. Main reason I stopped was all the travelling. It is a shame someone on here had great Forteo buildup, only to be lost by taking Prolia! There have been posts elsewhere about class action suit against Amgen, makers of Prolia, but only "talk", no action.

Thank you for your reply.....I shall start exercise, as that's the only thing I am NOT doing, as natural remedy. I am in Mississippi, USA, Caucasian, small frame, age 73, otherwise very good health. It is impossible to get good info here except for these blogs. Let's help each other by continuing to post. This blog is better than the USA (NOF.org) called "Inspire", and we have NO nurse Hotline!

Elizabeth65 profile image
Elizabeth65 in reply to Mamaandme

You can take the Forsteo with you as mine is only like a pen and needle are easily packed. If the hotel has a fridge you can ask to store it in the fridge or a cooler bag...there must be small cooler bags for flight. I'm going to Spain for two weeks at Christmas and carrying prescription in case security stop me with 14 small needles which I will keep in my case and load in plane. I'm 63 and slowly regaining my flexability as I was always doing something and hardly ever sat down.

Elizabeth65 profile image
Elizabeth65

I'm on Forsteo for the last two months and so far I'm happy with it. I've long hair and thankfully it has had no damage done. Stay positive and think that you are getting better every day. It is better than Prolia injections.

Timothy0172 profile image
Timothy0172

Can I ask why some of you are on aspirin? And what sort of exercise people do? I do a bit of Pilates but don’t like exercise at all. No fractures (yet). X

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