Terrosa experienses

[WandaJD]

I've been taking Terrosa now for some 6 months & have been experiencing a sort of brain fog & general lack of energy & malaise. The last 3 days I didn't inject myself & realised this morning that I felt way more alert & no brain fog. I can only put it down to the Terrosa as I've not changed any other daily routine! I was wary about it to begin with from the fleeting research I did on the Web & now intend to do a more in-depth investigation. They say only take it for 2 years - why this time frame? And I have more queries...

Has anyone else had similar experiences?

[MayGodBlessYou]

hola, i hope the terrosa is helping you.

my Mum used it for 3 weeks, and in that time had confusion, and sore legs;

I'd hoped it would help but the docs were not experienced or knowledgeable about it and they made mistakes in prescribing.

you have to follow the terrosa with another drug,

you can't stop taking it suddenly.

you might be able to ask your dr about a smaller dose;

the injector pen has variable settings.

[FrogLeg]

I have been taking teriparatide (which appears to be what Terrosa is) for almost a year. I have not experienced any symptoms which can be clearly/unambiguously attributed to the drug. But I am nevertheless suspicious of a few things.

The two year duration of treatment is based on clinical trial duration. Most of the studies in humans lasted that long. So prescribing for longer than that period is like incurring a risk of the unknown. Some are more concerned about it than others.

There was also the initial concern with the development of osteosarcoma, a kind of bone cancer. They discovered an increased rate in preclinical trials in rats, usually at much higher doses than humans might take. This lead to a black box warning in the USA, which has since been rescinded. Over time, while post marketing reports of osteosarcoma have come in, as I understand it these are no higher than background rates (in those not on the medication). No causal link has been established.

Nevertheless, such an initial finding might influence the recommendation for treatment duration (to be on the safe side). I think that is what we have in this case. I have also read anecdotes and recommendations to continue after 2 years in some cases, depending on turnover markers or similar (which might indicate that bone is still being built up) and severity of osteoporosis in a given patient.

[Jemi7266 in reply to FrogLeg]

I used Forteo (USA) for 2 yrs which is equivalent to Terossa. The only side effect I had was a sharp muscle spasms in my mid back. The muscle spasms started within 15 minutes of my injection and lasted about 30 minutes. This was not a daily side effect, it only happened about 1 x week and I only had it about 3 months out of the total 2 yrs I used Forteo.

The reason for the 2 yrs max is bc Cases of bone tumor and osteosarcoma have been reported during the postmarketing period; however, an increased risk of osteosarcoma was not observed in observational studies.

However, my endocrinologist informed me late last yr that the FDA has approved Forteo (teriparatide) to be used a total of 3 yrs.

I hope your symptoms go away and wish you great results with Toressa.

Best wishes & take care.

[Posy-White]

Hello WandaJD

Only just seen your posting - not sure if this is helpful I was on Forteo (equivalent to Terossa) for two years 2020 - 22, understood the two year period was what it had been 'safely tested for use up to two years'.

Re brain fog general lack of energy & malaise - in the first year I had a period dizzy spells, feeling sick, general lack of energy & malaise so after a few days contacted the hospital helpline. I was sent for a blood test and it was found my calcium levels whilst on the Forteo where too high. I was told to half the calcium tablet intack within 3-4 days everything settled down again. Once I finished the two year course I was told to increase the calcium tablets again back to pre Forteo level.

I know the systoms are not the same back do you think it's worth checking? I hope you are able to sort something out quickly.

Best Wishes

Posy White

[WandaJD in reply to Posy-White]

Thanks Posy. I've actually started the injections again as I read that stopping would mean losing the benefits accrued to date 🤷. It takes forever to see a specialist here in Spain, much like, I gather, in the UK or Canada, so I'll just wait until I'm advised as to my next appt. Meanwhile I'll play it by ear & use my judgement on reading info here & elsewhere.

[Posy-White]

Hello WandaJD,

Yes, I'm confident I am giving you correct information about stopping from what I've read also between starting and ending the two year course I changed hospitals. The new hospital talked with me and organized 6mths before ending Forteo the next treatment. This I had 8 days after my last injection. Then 10 days after stopping Forteo I had a call from the Consultant at the 'old' hospital checking that I had a treatment plan in place, "As it needs to be followed by the next course of treatment so that you gain and not loose all the benefits" (Or words to that effect!).

Good luck in getting an appointment so that you can get something sorted out.

Posy White