Terrosa

[Nuthatch]

Anyone else on this? Just done my first injection! Very easy, waiting to see if I get any after effects now. It says teriparatide on the box but the manufacturer says it’s a bio similar and it’s cheaper than the original. Fingers crossed it helps and any side effects aren’t too bad.

[Posy-White]

Hello Nuthatch,

Good luck

I also understood it's the same family as Forsteo but where as Forsteo was the only one available for the last few years but now there are two available Terrosa & Movymia.

I'm due to finish my two years of Forsteo in June so when I saw the consultant in March one of the questions I asked was are Terrosa & Movymia the same as Forsteo or if either an option to move on to. Was told they are basically the same, but now able to be made cheaper so it will become more widely available. Consultant also said at present current thinking is it is best to only have any one of these meds for the two years, tests on rats who had the medication for very much long started to show some developed growths of other cells (cancerous) so understandably the no one considers it suitable to do more than two years. The first group of people I believe had eighteen months of teriparatide. I'm waiting to have an after course scan to see I hope the improvements.

Best Wishes

Posy White

[Nuthatch in reply to Posy-White]

Thank you - I’ve been prescribed it for 2 years after a bit of a battle with the consultant and a ridiculous conversation with the GP who said it would cost £140,000! She didn’t notice one cartridge is 28 doses.. and that sums up their understanding of and interest in OP. They’ve been hopeless and quite unpleasant given I probably fractured in the first place due to them insisting for 4 months that I was just making a fuss about ordinary low back pain. It made more sense to me to start with this which promotes growth of healthy new bone and then move onto a bisphosphonate which maintains what’s already there. I read the NICE guidelines and of course it’s all about cost. The ROS nurse was very pleased to hear I’d been offered it as a first line of treatment. Now hope it works!

Only done 2 injections so far and the only thing I’ve noticed is that about 5 mins later I get muscle cramp and possibly bone pain round the fracture site. It went off overnight tho.

I do hope your next scan shows an improvement- did you have one after a year?

[Posy-White in reply to Nuthatch]

Hello again, I changed hospitals around the start of the Forsteo treatment, and had a scan about at the new hospital 3 months into the treatment, am to have the next scan when I finish the course next month. I am keen to see what the difference is as is the consultant.

I understood that Terrosa & Movymia are cheaper but I guess the medication is still expenses. I believe the Forsteo is approx. £800+ per pen. At that point when they started to deliver 3 months of pens at a time I ungraded to a new fridge as I was a bit concerned that I cared for these meds!

Like you I got to the point of needing help with 'bone medication' I managed by exercise and eating what I can (but have very bad food intolerances) for years before starting on meds.

I think your right the site is understandably used when we have problems I was sign posted to it by the ROS Nurse when I had problems with spinal fractures.

I did have problems at first with the Forsteo, dizzy, headaches and nausea for the first two weeks, I had blood tests which showed I had too much calcium so was told to cut down to one tablet every other day of the calcium tablets (1250mg). With in two days I was fine. Sometimes I get a bit of a bruise and a reminder that I had suck a needle in my leg, but I don't really think that counts as an issue!

Posy White

[88km in reply to Nuthatch]

Hi I’m just about to start with the Terrosa pen - is this what you took for 2 years ?Thanks

[Nuthatch in reply to 88km]

Hi - yes it is, but I’m still not quite half way through the 2 years. It’s very easy to use and I’ve had very few side effects - I always have an urgent need to wee about 30 minutes after the injection! My hair is definitely thinner (and it wasn’t great to start off with) and I’ve definitely put fat on round my tummy (don’t think it’s lockdown snacking). But I can live with that for another 14 months! No nausea or dizziness. I do the injection in the morning after breakfast. Once you get used to it, it takes seconds.

This time last year I had awful pain, wicked muscle spasms and was terrified I’d fracture again from doing anything. I have much less pain now, I’m much more active and I’m less worried about fractures tho I’m still careful.

I’d absolutely recommend Terrosa - I hope you find it as straightforward and beneficial (won’t know whether I’ve had a significant increase in bone density till I have another Dexa and heaven knows when that will be) but the relief from the pain is great.

I also take calcium, vitamin d, vitamin k and collagen. I was only advised to take the vitamin d but I’ve added the others after reading posts on here. They may do some good and I doubt they do any harm. I also take CBD oil when I can afford it, it seems to help with any muscle soreness I get if I overdo things.

Good luck!

[88km in reply to Nuthatch]

Hi & thanks so much for replying . That’s very encouraging to hear that it’s working well for you . I have constant back pain just now so I’m hoping that this will improve like yours did . 😊

[sweetsusie]

I wish you good luck, Nuthatch...personally, I wouldn't take any of these bone meds. You can take this one for 24 months...then you have to come off of it, and be put on another kind...maybe by then there will be something safe and with much fewer side effects...that tend to ruin peoples' lives....

[Nuthatch in reply to sweetsusie]

I refused the bisphosphonates because I have crohns and already have reflux plus I broke a tooth just as lockdown started so dentist appointment was cancelled. Teriparatide has a different mechanism of action and works to create new healthy bone rather than preserve existing possibly poor bone. It has side effects like any drug but at least ONJ isn’t one of them. It can also help to heal existing fractures. With 5 compression fractures and a spine score of -3.6 I can’t do the sort of exercise that helps to build bone density though I hope to be able to do so at some point.

I know the drug route is not for everyone but I researched it extensively (looking at research studies) and decided this was the best option for me.

[Gillymar]

I self injected Teriparatide for 2years. I never had any problems at all. Finished the course about a year ago and anew course was never suggested.

[Nuthatch in reply to Gillymar]

Glad to hear you had no problems. People self report negative experiences far more than positive so it’s easy to get a skewed perception of potential problems.

[Lolalee in reply to Gillymar]

Hi Gillymar. Glad you had no major side effects with Forsteo injections . I’m in my 5th month now taking them . The side effects come and go . Latest is facial bone pain. Hope it passes soon. Also did u put on weight with it especially around the tummy as have noticed that I did !

[88km in reply to Gillymar]

Hi there - did you have any side effects at all - I’m about to start the injections & worried about the dizziness & bone pain ?

[Gillymar]

Good luck. I am overweight but it is not due to teriparitide as far as I know. More due to immobility I think.

[Hidden]

I won’t take any of these drugs they don’t know enough about. Scary

[pjwjgw]

I have just started Terrosa so far no side effects . Was on Risedonate for 5 years which contributed to stress fracture of my right Femur and another stress fracture was forming in the left. After repair my consultant fought to get me on Terrosa I'm pleased to say. I was diagnosed early 2014 , following a spinal wedge fracture with another the following year. Also on Adcal-D3 which I do not tolerate too well. Am really hoping this new treatment works!

[WandaJD]

Hey there from Spain!

I've been on Terrosa for about 6 months & haven't noticed any side effects other than my hair seems to be somewhat thinner. However, that could also be seasonal with autumn & winter.

I have started going to a wonderful chiropractor though for my kyphosis & escoliosis & that seems to be helping a lot!

I don't think you have to worry too much & bear in mind that it likely takes 3 to 4 months, they say, for Terrosa to actually start working on your bones, assuming it does 🙄. I have little faith in the pharmaceutical industry, but guess it's worth a try here! Just stay aware of your posture & try to keep spine & neck straight, walk as much as possible & eat healthy foods.