TREATMENTS AND BONE LOSS.

[Sunseaandsand]

I had a Dexa scan 18 months after stopping Forsteo and my hips had gone down by 8% my spine by 14%.

A further Dexa 18 months later and the hips had gone down by14% and the spine a further 6%.

In 3 years I had lost a total of 22% from my hips, and a total of 20% from my spine.

This was 3/4 of my total bone loss from first being diagnosed!!!

I have always kept my records and this only came to both mine and my husbands attention recently after having 3 more spinal fractures last year.

My records also show for me, that on having a drug holiday from Bisphosponates, the loss of bone density is slower than when compared to stopping the Forsteo. (It is well known that the Bisphosponates stay in the bones for some time after stopping treatment)

I can see now the great importance of following on with treatments.

After 16 years though I can not help but wonder how things would actually be now for me had I not had any treatment.

[MollyStark]

Hi Sunseaandsand, can I ask how long it was from stopping Forsteo to starting another treatment?

My consultant has told me I must start another treatment (he's suggesting the annual bisphosphonate infusion) as soon as I finish the course of Forsteo, (I am 4 months in) with a dental check and any dental work to be done in the meantime - not possible at the moment as I can't travel or lie back in a chair due to spinal fractures.

We really are between a rock and a hard place when it comes to having treatment or not. But I suppose it is a similar dilemma for other conditions.

I hope you're doing as well as can be expected and not on too much pain. x

[Sunseaandsand in reply to MollyStark]

I am so sorry to hear of your pain and hope that you have some medication to help you cope with it.

I find it can sometimes be hard getting the right balance of pain relief.

It is good that you are doing well on the Forsteo and that you have a consultant who is taking an interest in your condition.

I was off the Forsteo for about a little over a year, then was put on Raloxofine because I did not want to go on Prolia and the hospital would not put me back on Bisphosponates (because of bad side effects I had whilst on them previously)

I was then taken off the Raloxofine because I developed a blood clot.

As we were running out of options and I had 2 new fracturesit was decided by everyone concerned I would give Ibandronate another go.

My side effects came back so yet again treatment had to be halted.

I had a Prolia shot in 2019 followed by 3 fractures last year and have been awaiting a yearly injection of zoledronate since December 2019.

Please do not let my experience worry you in anyway, I have said before that I do believe if the medications are well tolerated it appears to be safest staying on them.

Stay safe and I hope you do not have any more fractures to add to the ones you already have.xx