Anyone taking Forteo

on 4/28/18 2:26 pm
DS on 10/18/12

Greetings all you'll have to excuse my typo and grammar issues I am using talk to text because I had broken my arm due to osteoporosis that's the reason for this question I am 5 plus years out from DS5 plus years out from acute my Lloyd leukemia after the DS and now I've learned that I have high risk osteo process with AT score of negative 2.9 my docs are recommending for teo because they say it's the only drug that actually builds new bone rather than stops the progression although I'm very concerned of the risk of bone cancer which Is why i'm asking for feedback. Any feedback on any view that are taking 4 tail be greatly appreciated thank you Julie

on 5/2/18 3:07 pm

Hi Julie

I am on Forteo and have been for 18 months. The max time frame is 24 months.

I am on it due to bone disease. Osteoporosis is just an added issue for me. You are correct that it is the only bone drug that can actually build bone. Once you finish the forteo treatment you progress to a different drug to "maintain" the new bone growth

Its expensive. I have great insurance but it still costs me $230 per month with a 10% co-pay. However if it works then its cheap

My complaint with this drug is the pain. I had severe debilitating pain taking Fosavance. I stopped it after 6 weeks. I am also experiencing pain with Forteo but not quite as debilitating. However it is constant and gets on my nerves. I take opioids to combat the forteo pain as well as to help with my regular bone pain from so many fractures.

I have a follow up MRI in September to see how my spine etc. has improved and hopefully the drug has done its work.

I was worried about the possibility of bone cancer too but I am also worried that I will crumble so its up to you to pick your poison so to speak. I rolled the dice and decided I didn't want to be in a wheelchair in my 70's.

Good luck. The drug company that supplies the drug has a great program with an assigned nurse for the duration of treatment. You know its expensive when they assign you your own personnel!






on 5/2/18 9:39 pm
DS on 10/18/12

Birdy girl thank you so much for the detailed response I am on my 5th day of fortero and other than initial bone pain and fatigue I'm actually feeling pretty good and haven't had the pain that you describe thank goodness I am so sorry you're having to deal with this I am also blessed in that I have tricare prime as my husband is retired Air Force and I am not paying anything for this drug so I am so grateful for that as well. my plan is to stay on it for the full duration 2 years and then as you say take the fosamax to solidify the new growth I'm also starting some weight training to see if I can build some bone mass there as well I do have a dexy scheduled next week to see how much I have changed since last year again I appreciate your feedback and wish you all the best blessings Julie

on 8/14/18 10:35 am

I couldn't take the fosamax, it messed me up bad!!! Not pretty. If you are having bone pain, I would call my doc immediately, I've never heard of it causing bone pain. My email is [email protected] if you want to contact me there, I will see it quicker. This really sucks, trust me when I say I know! Make sure you are getting your calcium, magnesium and Vit D3. Good luck, connie

on 8/12/18 5:18 pm, edited 8/14/18 3:36 am

Hi all, I took Forteo for about 9 months, and had a co-pay assistance card. I only had to pay $4. per injection. I have recently been put on Tymlos, which is a synthetic of Forteo. Basically the generic. Same rules, cost, possible side effects. I have never heard of any one having pain from the injection. I personally being the graceful person I am tripped over air and broke my back in 3 places when I landed. This is when I found out I have a sever case of osteoporosis. My bone density scan is starting to look better, so i do have these drugs to thank for rebuilding my bones.

If anyone wants to discuss this topic further please feel free to contact me. And Good Luck!

For the record, I am about 10 years out from my DS....STILL LOVING AND LIVING IT!!!

on 8/12/18 9:15 pm
DS on 10/18/12

Thank you for the reply. I would love to chat more. I direct messages you


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