Forteo

[Nemone65]

Hi I have been taken forteo for a year but now finding I am getting what I would say side effect. Muscle pain etc generally feeling unwell. I am thinking of stopping this for a month to see how I go, has anybody else tried this before. My doctor doesn’t know anything about forteo and my consultant just brushes it off telling me I need it.

[HeronNS]

It's hard to find info on line - seems like denosumab (Prolia) has taken over! BUT I did find a comment that if you feel unwell, like nausea, constipation, low energy, this may be a sign there is too much calcium in your blood (caused by Forteo). Have your calcium levels been monitored while you've been on Forteo?

fda.gov/media/73484/download

[Nemone65 in reply to HeronNS]

Only have a blood test every 6 months so guessing it must ok had the last one in November

All the consultants ever says is you very lucky to have forteo as it’s so expensive

[HeronNS in reply to Nemone65]

Well it isn't that long since November, but it might be worth asking in case it was only just on this side of being considered high. At least then you could rule that out as a possible reason for the side effects. I gather this is relatively recent it's started to make you feel ill?

I couldn't find any evidence that it was unsafe in any way to stop teriparatide, unlike denosumab which can lead to rebound osteoporosis, but I have an uneasy feeling that I've read recently there may be a problem with teriparatide. If I track that down I'll post. And if I don't it likely means I misunderstood the statement.

[HeronNS in reply to HeronNS]

This:

nature.com/articles/boneres...

" Teriparatide-PTH1-84 discontinuation

There is agreement on the need to start treatment with anti-reabsorptive drugs soon after the treatment course with Teriparatide serves to preserve the acquired benefits "

and " The decision to discontinue treatment depends also on the drug used and on the re-assessment of fracture risk after at least 3–5 years of treatment. A treatment course with Teriparatide must always be followed by therapy with anti-reabsorptives (e.g.: bisphosphonates). "

So the risk appears to be not so much a rebound effect like with denosumab (Prolia) as that the improvement is not maintained.

At this point one says, what else can one do to improve the bones? I wish we all were taught more about our bones early in life, like the way we all learn about the dangers of smoking or the importance of a good diet or exercise for heart and brain health.

[Sunseaandsand]

Hi,

I was on Forsteo for 2 years.

It was hard going continuing for that length of time, there were many times I wanted to stop it.

I suffered the side effects you mention, plus continuuos Nausea, which by the end of the day would be so bad I could not face injecting so my husband had to do it for me.

We know our own bodies and if we say we re suffering side effect then we should be taken seriously!!

It is your choice to continue for another year or not.

What I would say is that if you decide to discontinue with it, have something ready to take its place because the bones in my exparience take a dive if there is a gap between treatments.

I had one injection of Prolia this year and I personally would not recommend it.

My experience with it has not been a good one that is the reason I will not recommend it.

I think the Bisphosponates are the best of all the treatments as after 3 years you can usually have a drug holiday, but again these work for some and not others.

Been between a rock and a hard place is not a pleasant place to be.

Let us know what path you take.

[Nemone65 in reply to Sunseaandsand]

thank You for you reply, I think I will restart it again today

I am going to stand my ground and not take Prolia once I finished with forteo

Hopefully my consultant will agree with my decision

[Fracturegirl in reply to Nemone65]

I’m glad to see you say no to the Prolia. I took that in the past and after two shots I stopped because of awful muscle pain in my arms and legs constantly. I then have had 13 rebound fractures over three years. They never stop. Now I’m on Forteo and haven’t had any fractures for almost a year. It works. All vertebral fractures.

[Posy-White]

Hello Nemone65

Just caught up with your question to the group and Heron comment about the possible connection with calcium levels.

When I first started Forsteo I had nausea, dizzy spells and a very bad head ache for six hours each day after each injection, I was always thirsty and vomited if I drank too much. I was at the time still unwell from spinal fractures so hard to tell if I had no energy! Consultant told GP to run blood tests, but I could tell you what was being looked for, three days later was told to only have one calcium tablet every other day, within two days I started to feel better.

Now pen 18 if I occasionally have a nausea, dizzy spells (usually 30 - 40 mins after injecting) if I have more than two days of this I skip a calcium tablet going two days without, this seems to work for me. The calcium levels are checked when I have the three monthly blood tests.

Might be worth looking at your calcium intake to see if a lower intake helps?

I do not think I'm lucky to be on an expensive medication, I have paid towards the health service, I respect all the medications I given, I even bought a new fridge to store the Forstoe at the correct temperature. The drug companies set the cost of medication. No professional should make one feel guilty for requiring treatment, which is expensive. I very politely told the nurse who made that same comment to me that making me feel guilty was not a nice or professional thing to do. She did say she was sorry for upsetting me.

Good luck with sorting this out. Best Wishes

Posy White

[Lifewithdogs]

I took it and stopped after around a year because of muscle pain, leg cramps and feeling poorly. They put me on Prolia, which after 4 injections I stopped. Now trying to get my D levels and calcium to normal levels. Foximax is next. You just seem to never feel right after taking these drugs. I really don’t have an answer as my bones being petite and tiny, scoliosis and osteoporosis are a curse.

[Lifewithdogs in reply to Lifewithdogs]

Your story is my story, except I have had two scoliosis surgeries. One at 17 Harrington rod T-2 to T-12 and a full revision at 60 as severe rotation from pulling away from spine. I was athletic, which may have been a reason, though I enjoyed being active. That last surgery is to the sacrum. I am 100lbs, always been tiny. Trying to get calcium and D levels up to start Fozimax. I am done with Forteo and Prolio. I may never feel right again. I did well until my 50’s and was put on all these drugs. My sister is a year younger, scoliosis surgery at 13 and she is fine. Never takes any man made meds, all natural. There is something to be said for this. Good luck to you.

[yarts]

I took Forsteo for 2 years after having 8 vertabrae fractures. I had no problems at all no hassle to inject every day and felt very well on it. I have RA as well and have to be on prednisolone which have contributed to bone loss. It worked well for me and I followed up straight away with raloxifene. I refused Prolia and Alendronic Acid infusion, this was over a year ago and touch wood no more fractures.

Best wishes.