Forsteo

[Tuckress]

Just started Forsteo. Very nauseous. Noticed post suggesting cut down dairy do is soya yoghurt okay? Also can I expect weight loss or gain.

[Sunseaandsand]

Sorry to hear that you are having side effects from the Forsteo.

I was the same when I had the treatment.

It was like morning sickness but went on all day.

I would just want to crawl into bed by early evening and in the end could not face injecting myself so my husband would do it for me.

I also had bone pain especially in my shin bones and a general feeling of weakness and exhaustion.

Nothing I tried took the nausea away and I I did not want to take anti sickness pills because they also come with side effects.

I stuck it out for 2 years and looking back don't know how I managed it.

Probably the fact that I had a fracture and was afraid of having more.

I now have six spinal fractures.

It did not prevent me having any more fractures.

PLEASE do not let my experience put you off or sway your thoughts in anyway.

We are all different and what works for one does not always work for another.

The way I see it now is that I wasted 2 years of my life feeling rotten from the side effects for nothing.

I did not know what my results would be at the end of it and was eager to do everything posdible to improve my bone density and lessen my risk of any further fractures.

There are others that do well on these treatments and suffer no ill side effects, I wish I was one of them.

If you want to ask any questions I will gladly answer them if I am able.

If you look through my posts you may find it helpfull.

All the best with your treatment and care.

One thing you asked was about weight gain or loss.

I actually lost weight that I could not afford to lose(I lost weight on all the treatments I have been given for osteoporosis)

For me not a good thing or the feeling of being ill.

Yet I have continued to try the different treatments.

CRAZY ??no I do not think so just desperate to find something that works and does not give me more problems than I already have with the fractures!!!

[Tuckress in reply to Sunseaandsand]

Well, I was on Alendronic Acid for over 4 years and osteoporosis got worse so I’m pinning all my hopes on Forsteo. Many thanks for you reply.

[Sunseaandsand in reply to Tuckress]

Sorry to hear your Osteoporosis did not improve on AA.

Do any of these treatments actually work??

I had the same problem with forsteo.

In fact I was given a dexa scan 6months into my treatment and the density in my hips had decreased by 14%!!!

We were shocked but when we questioned the consultant was told it was probably not a coerect reading and not to worry.

After the 2 years of treatment was completed I had another dexa scan.

This showed the hips had retreived a little of the 14% which I had lost, but I ended up with the hips still much worse than when I started, and the spine had only increased very slightly.

All in I was worse than when I started.

It is supposed to give good results and I would love to have concrete proof of that.

I hope yourself and Posy white will have good results.

Have you thought though after the 2 years have passed what are you then going to be treated with??

If you can not take AA what will you do?

As with all the bone treatments if one is not followed by another then this causes more rapid bone loss.

Did you have a long gap between AA and forsteo without treatment, could this be the reason it did not work for you??

[Posy-White]

Hello Tuckress

Sorry your having problems - I just finished my two years of Forsteo, I did have problems at first with the Forsteo, dizzy, headaches and nausea for the first two weeks. I contacted the hospital and was sent for blood tests which showed I had too much calcium so was told to cut down the calcium tablet(1250mg per day) I took, to half a tablet each day. (I have diet problems no diary so couldn't cut down that way). With in two days of cutting down on the calcium tablet I was fine. Sometimes I got 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!

I have problems with maintaining weight but manage to stay the same (45-48kg) during the two years.

Good luck in sorting this out.

Best Wishes

Posy White

[Lolalee in reply to Posy-White]

Hello Tuckress. Hang on there. Your body needs to get used to it. I am in my 8th month and I can’t say there are no side effects . I would say nausea and bone pain being the worse but there are good days . I don’t have any fractures thank god so I am hoping after two years my Dexa scan will show good results . I gained weight around the tummy but that could be with age or hormonal. Stay safe and good luck

[Tuckress in reply to Lolalee]

I certainly will hang on and thank you

[Tuckress in reply to Posy-White]

Many thanks for your reply. I think It is early days for calcium to be a problem. Had blood test before I started Forsteo. Will persevere.

[Fruitandnutcase in reply to Tuckress]

I don’t know, I had problems as soon as I started my first calcium and vitamin D combo - within the first week. If I hadn’t started it a week before I started alendronic I would definitely have blamed the alendronic. My GP prescribed a different type of calcium and vitamin D but I felt just as bad and in the end it was decided that I would step up my dietary calcium intake.

[Posy-White in reply to Tuckress]

Hello again Tuckress

Just to confirm I had a blood test before starting Foresto. Had the problems in the first 10 days looked up side effects and saw the 'sometimes' concerns with the calcium so contacted the hospital on a 'is it likely / do I need to do anything different' - hospital suggested blood check is it 'sometimes causes' issues. Too much calcium is a problem and I had too much, as shown in my blood test. Just suggest you check in with hospital / doctor or phone ROS helpline and get an other opinion.

Best Wishes

Posy White

[marigolds]

My Rumatologist is insisting I have 6 month injections of Prolia as I have 3 vertebrae fractures but the side effects I have researched are horrendous. I am sure they don't read them as they just brush it aside.