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Old 08-09-2012, 05:36 PM   #1
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starting forteo, any helpful hints

Hello to all
My doctor is starting me on forteo in couple weeks, my scan for the spine was very bad 4.3, needless to say actenol did not help.(took for 6 mo side effects were not good) all my blood test are fine and she feels family history is the main reason for this. My question is what am I in for? Little scary using a needle daily, and I do not know about side effects. I have been told whit out this I am facing spinal fractures,my back hurts now at times,I have little choice I know and I am a active person and only 58. But very nervous,about this drug..Please help

 
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Old 08-12-2012, 06:59 PM   #2
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Re: starting forteo, any helpful hints

I am pretty much in the same situation as you. My L3 and L4 is -4.3 THe rest of my spine is -3.2 I did actonal for 4 months before ending up in the ER with severe side effects. Did the calcitonin nasal spray. Didn't help. I did one injection of forteo and was sick for almost 2 days so I didn't do another one. The shot truly wasn't as scary as I thought it would be. Poking yourself on a rose thorn hurts a heck of a lot more. Now the dr wants me to do the reclast but it is the same thing as actonal. SHe told me so what if I am really sick for 3 days, it is worth it. Well, what if it is truly a reaction that stuff is in there for a year. So I am thinking of trying the forteo again and seeing if I can get through a few days. This is sure a nightmare.
I don't drink, I don't drink sodas. I don't smoke and I used to exercise everyday. My D is perfect as well as most other tests. I still can't help but think there is something the doctors have missed that is causing this.

 
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Old 08-13-2012, 08:59 AM   #3
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Re: starting forteo, any helpful hints

I'm in the same situation as well. I've tried almost every osteo drug on the market including Forteo but couldn't tolerate any of the side effects. I'd never consider Reclast since the side effects would last a year. I've overcome the problem of having the doctors "scare" me into taking any more meds. I just do what I can, i.e. calcium/vit.d/magnesium, exercise daily, and hope for the best. The problem with Forteo is that after two years when you stop taking it, you're right back where you were before since your gains don't last unless you start a bisphosphonate.

 
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Old 08-13-2012, 05:08 PM   #4
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Re: starting forteo, any helpful hints

What were your side effects

 
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Old 08-14-2012, 08:35 AM   #5
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Re: starting forteo, any helpful hints

Quote:
Originally Posted by plc View Post
What were your side effects
The main one was it affected my sleep so badly I had to discontinue. Kept waking up abruptly in the middle of the night. I usually sleep fine.

 
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Old 08-15-2012, 05:43 PM   #6
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Re: starting forteo, any helpful hints

For the record, Forteo grew me some wonderful new bone following mega spine surgeries and was a real life saver. I had zero side effects and I have happily maintained my gains in the 4 years since with Strontium citrate.
No more fractures - no more pain!
Good luck -
Carol

Last edited by turtlelady; 08-15-2012 at 05:43 PM.

 
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Old 08-15-2012, 06:23 PM   #7
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Re: starting forteo, any helpful hints

Quote:
Originally Posted by Piano0105 View Post
The main one was it affected my sleep so badly I had to discontinue. Kept waking up abruptly in the middle of the night. I usually sleep fine.
I do that now, but thanks for letting me know

 
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Old 08-15-2012, 06:29 PM   #8
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Re: starting forteo, any helpful hints

Thank you for this postive reply, I am bit nervous,but need to do something. my back does hurt at times,and I do not want a fracture. Thanks for the info on strontium. So you use that instead of reclast or prolig to maintain your gain from the forteo? I am hoping by the time I am done with forteo (postive outlook) there will be something else.
Did you have any problem with the needles injection?

 
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Old 08-15-2012, 06:47 PM   #9
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Re: starting forteo, any helpful hints

I will not do bisphosphonates again. My first experience (with Fosamax) left me with a permanently damaged esophagus. The needles were no problem whatsoever. They are so tiny you rarely even feel them. There are other products out there now, but better is yet to come. Prolia is a recently introduced monoclonal antibody based med which is said to be effective, but has a similar mechanism to the bisphosphonates and may share some of the more serious side effects. Strontium ranelate is the drug of choice in Europe. It has not been approved by the FDA for use here so many of us use the citrate salt of Strontium instead ( being a supplement rather than a med the FDA is not interested in it).
Again, good luck!
carol

 
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Old 09-03-2012, 11:02 AM   #10
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Re: starting forteo, any helpful hints

I recently finished two years of Forteo. Didn't realize till afterward that the gains you make swiftly recede unless you follow up with another med - so, really, you need to be on something for the duration.
Forteo improved my spine from osteoporosis to osteopenia, which was very encouraging. Less improvement in the hip, but it's a different kind of bone, and that is not unusual. My doctor wanted to go right to Prolia, but it just didn't feel right to me, and I just had a Reclast infusion, which will last for a year and to which I've had a positive reaction in the past. My hip DEXA scores have held steady with Reclast, and even slightly improved.
I felt a little overwhelmed starting Forteo. There was the need to refrigerate the medication, the need to inject at a different site every day, and only below the navel, the need to dispose of the needles (they take them at my local Public Health Department), arrange for delivery from the specialty pharmacy, etc. But I was lucky that I only had to pay a $30 a month co-pay for this very expensive medication. Traveling with the Forteo is inconvenient, but do-able. Motels/hotels are required to provide a mini-refrigerator for you if you are traveling with meds that require refrigeration. I was waved through airport security with my supplies the few times I flew with it. But it can only be out of a refrigerator for some few hours, even with the insulated bag. There is a travel bag I considered buying - on Amazon - designed for people with diabetes traveling with insulin - which was very well planned out, but I ended up not getting it.
And, it is the only medication out there now that actually builds bone as well as stopping the loss of bone. One other thing: it can increase the risk, or the size, of kidney stones, so it is wise to have a few kidney ultrasounds while you are taking this med. Also your calcium level should be checked from time to time. Good luck!

 
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