Starting Forsteo

[Agho]

Hi All,

I have severe osteoporosis in my spine (-3.6 L1-L4) but never had a fracture, thankfully.

I have exhausted my use of Fosamax after 10 years of use (2003 - 2013) and I had 1 Prolia injection about 5 years ago and had dreadful, crippling side effects so never had another. My endo has now prescribed daily Forsteo injections and I'm dreading taking it as I'm extremely sensitive to medications. I am already battling Graves disease with all its nasty symptoms so can do without any further issues.

I'm looking for any tips or tricks that anyone already taking Forsteo can offer to reduce side effects. I'm going to fill the prescription at the weekend and am unsure whether taking it at night initially might be a good idea to minimise the impact.

Thank you for any help you can offer.

[Armagnac]

I took Forsteo for two years it was not a problem. I am also not good at oral medication. I always did the injection before going to bed. I recall it may have caused some rashes but nothing serious. Doing the injection is very easy. Also it did improve my DEXA scores. Good luck.

[Agho]

Thank you for that link.

In reply to your questions, my thyroid journey has been a long and complicated one that I posted about on the Thyroid Group page over the years. I never had radiation therapy but had surgery many, many years ago. My thyroid has regrown a significant amount of tissue over the years and is now hyperactive again. I don't take Carbimazole as my endo doesn't prescribe it until TSH is suppressed below 0.1, mine is at 0.15 and I have very high TRAb antibodies.

I didn't do well on Prolia, I had severe muscle/bone pain in my hips, legs and arms for the six months it was in my system but I know others who have got on very well with it. Very best of luck with whichever treatment you decide to go with.

[Deb967]

I had 1 Prolia and a lot of side effects. 9 months later I had 1 Reclast and passed out 12 hours later plus all the flu symptoms. Today every bone in my body hurts.

[Elizabeth65]

Hi sorry to hear of your pain. After I stopped Prolia and had two spine fractures from withdrawal of Prolia, the bone hospital put me on annual infusions of Aldronenate for 2 years and then a 2 year holiday. The holiday is over this month and I'm due a Dexa Scan. They may put me on infusions again. I had no problem with annual infusions in Out Patient Unit and saves all the daily injection stress. Best of Luck with treatment.

I'm on Humira biologic fortnightly self pen injections for arthritis and tests say I've Rhem Arthritis and they are easy to administer in my stomach fat or top of leg. Consultant said my fingers show wear tear arthritis like many people but I'm flexible and always moving.

Bless all with health issues.

M

[Posy-White]

Hello Agho,

I hope this is suitable for you, I have noticed a number of people do have problems with Prolia, not nice when it stays in your system for so long.

I found I did better doing the Forsteo injection in the morning, I believe it's advisable to drink extra water, I needed to therefore it was easier for me to be up and awake.

I had a few problems in the first month, dizziness and feeling sick and leg cramp. When I reported this I had blood test and it was found I was taking too much calcuim, when this was reduced I was fine.

I was concerned about having to inject myself, but it was really easy with a tiny fine needle just under the skin. Within the month I felt I got the routeen sorted and was confident to travel using the special freezer blocks and travel bag.

I do hope this works out for you. Kind regards

Posy White

[Agho in reply to Posy-White]

Thank you so much for your reply, Posy-White.

I'm very happy to hear you had a positive experience with Forsteo. I will make sure to have plenty of water while doing the injection.

Can I ask a question please? I'm seeing suggestions that the device needs to be taken out of the fridge for a while before using to allow it to come to room temperature. How long did you leave it for each morning?

Agho

[Posy-White in reply to Agho]

Hello Agho

I was told about 5 minutes BUT I had the Forsteo injections some time ago in 2021 and I think some ideas on temperature have changed. So , sorry I don't feel I can be of help to you.

Posy White