Forteo at 6 months, side effects, new pen?

[cmoc]

Wasnt doing too badly on Forteo every second day and now on month 6, started developing fluey type migraine head daily, dizziness, vertigo, fatigue, stiff and can hardly walk for a few minutes when getting out of chair and feeling sick a lot. All this seemed to start soon after starting a new pen. Has anyone experienced worse symptoms after a new pen?

Also, has anyone experienced these symptoms at month 6 then they have gone away? I am having to stop the Forteo for a few days as its intolerable at the moment.

[Sunseaandsand]

Hi, Sorry to hear you are not feeling good, I hope you will soon begin to feel better.

I was treated with Forsteo in 2012 I did complete the 2 years course but it was a really difficult time and I so wanted to stop it.It was the fear of having more fractures that kept me going with it.

A nurse has since told me that many patients discontinue with it because of the sickness.

My symptoms were very similar to your own, the worst was the feeling of sickness and nausea which lasted all day but often felt worse in the evenings.

It became so bad that I was no longer able to inject myself and my husband had to do it for me.

I would crawl into bed moaning every night and looking back I just don't know how I put up with it for so long.

It also did effect my walking and climbing the stairs and I had bone pain mostly in my shin bones.

I would not think it has anything to do with using a new pen.

It may be a good idea to have your bloods checked as the calcium levels can change and it would at least rule that out.

One thing I would say to you as I have said to other members, please do not make the same mistake as I did.

When I came off it I wanted a break from all medication, I had felt so ill whilst on it I just could not face any other treatment.

I was advised to go onto to a different treatment but declined saying I needed a rest.

This was a huge mistake on my part because as a result I lost all the density I had gained as a result of having the Forsteo and even worse I never regained it.

My message is that if you find at any point you can not continue with Forsteo then make sure you get on another treatment straight away.

Take care and please let me know how you get on.

[cmoc in reply to Sunseaandsand]

Hi, thanks for the reply. I am so sorry you lost all the gains you made on forteo, that must have been awful after putting up with the side effects of the drug for 2 years. How long was it before the gains were lost? I know I will have trouble with any other drug as I am so drug sensitive, I was amazed I managed to tolerate Forteo up to now. Am having bloods taken next week to check the calcium level.

[Sunseaandsand in reply to cmoc]

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)

This makes me wonder where I would now be without any treatment.

[cmoc in reply to Sunseaandsand]

That is really worrying. Is that common, I wonder, than people lose so much bone after stopping Forteo. After all, we have no guarantee that something is going to work to keep the gains. Going back to baseline is bad enough. How much more did you go down from where you were before you started on the Forteo?What treatment are you on now?

[Sunseaandsand in reply to cmoc]

From my very first scan to the one I had 18 months ago, I have lost 35% of my bone density from my hips and 28% from my spine.I am thinking I will have lost more since my last scan as my last treatment was in February 2019.

I was due to begin a yearly infusion of Zoledronate last year but it was cancelled several times due to covid 19.

My next appointment is in Apri providing they do not change it again.

I have no ideas as to how common my experience is, but it would make good reading if others posted their findings.