Well, the PA at the endocrinologist's office loaded us up with a month's supply of Forteo and accessories , talked DH through his first injection, and answered all our questions. My husband is still very nervous about the osteosarcoma risk, but since his PA has had such good results after two years--and continuing for even longer--I think he's resigned to it now.
The tentative plan is for my husband to do two years on Forteo, then to Fosamax for a while, and then back to Forteo for another round.
Oh, by the way, DesertBloom, I got his numbers (since you asked) and they were 23 for ntx and 9 for osteocalcin. I guess that second number is the one that clinched the deal. He'll go back at the end of four weeks and get those levels tested again. Then I guess we'll find out for sure what the cost will be. I asked Rite-Aid how much they charge and they said it lists for $924! I hope we'll be able to do better than that at CostCo or WalMart!
Hi Aleta: I hope he didn't have any trouble with the injection, has he noticed any side effects? The only thing I noticed from the first shot was a very slight dizziness, but it "really" didn't last for more than a 20 seconds, and then it never returned.
Wow I had no idea that the retail price had gone up that much, I just read a quote for another pharm and it was 859.00 but it was one of those online distributors, so I don't know how those work or if they are safe-I guess they are if they are well known. One thing about the price and continuing on past the 24 mos, is that my insurance told me they would not pay for it beyond that time limit, and since I wouldn't be able to continue to get the samples, I wouldn't be able to afford it.
When I was looking into insurances for my Part D plan through MC, I thought about Blue Cross since I have that insurance as my secondary on Medical, and they told me if the copay price was too high for the Forteo, all you need to do is try to get the tier changed. The BC rep also said approximately 90% of those tier/drug exceptions go through in favor of the patient. Most plans categorize all meds in either generic, preferred brand, non preferred brand and specialty meds which is what most of them consider forteo to be (specialty) which is the most expensive copay category. I don't know how your appeal process works, but they are all about the same. If the copay is too high you have the dr write a letter called an "exception" or "tier change" explaining that he has already tried fosamax and can't take it anymore which only leaves forteo. The dr would also have to say it's a medical necessity due to his dx, and usually you can get them to drop the copay price to a more reasonable figure since there is NO generic equivalent or substitute. Look in your BC manual for "tier changes" and "drug exceptions". This also works the same way for an insurance that doesn't cover the med at all. If you stay on top of this, and the dr fills out the proper forms which can be faxed, you should have an answer within 72 hours. If, for some reason they don't give you a lower price, you MUST appeal the decision with the necessary appeal forms. My dr was really helpful with this, and told me up front, we'll do whatever to get this to go through.
When he has his next bone marker test, you'll "want" to see an "increase" in score. When you take bisphos's you want a low score and with forteo you want a high score, because they work conversely. My last NTx was 60 and had gone down from 78, but the dr at LLU said the reason was the fact I was taking hrt, which is a antiresorptive like fosamax, which lowers the score. Because I was taking two different drugs that do 2 different things the antiresorptive (hrt) was hindering the forteo, and lowered it. I'm now tappering off of hrt.
I wish I could go beyond the 24 mos on forteo, because it's been the easiest drug for me to take and it's work so well, but they all tell me no. I wonder if I agreed to sign a med waiver if they would change their minds.
Remember that the rats getting the human dose of 20 mcgs for 20 mos "did not" contract "any" cancer, it was only the ones taking the extra large dose for their lifetimes that contracted it. If we were given up to 60 times the dose we are, maybe we would get osteosarcoma too, but since we aren't I don't worry about it. It was the strength and length of the dose given to the rats that caused the cancer, and the ones given the human dose "did not" get "any" cancer. I hope this eases his mind, since this seems logical to me that if you overdose a cancer predisposed rat you can expect to have problems, but no cancer was seen at the human dose with the rats. Also no humans have contracted it either.
Tell him I'll be keeping my fingers crossed and hope this works well. If you have any questions don't hesitate to ask, but it sounds like you have everything covered.
Last edited by DesertBloom; 02-05-2008 at 08:36 PM.
He wasn't dizzy after his first injection yesterday, but I don't think he got the full dose. This morning he did better, but it stung a little. Other than that, he said he didn't feel any different, and a couple hours later he went off to the gym. I told him, "Go make some bones!"
I think our PPO has a 30% copay on self-injectables, but I'm not sure. We're taking it one step at a time: First, make sure he tolerates the drug. Second, figure out how we'll pay for it.
Hi Aleta: When I went to the class they told us to leave the needle in to the count of 5, but I worried about counting too fast and whether I was getting the whole shot. Anyway I now count to 10 and am sure I'm getting it all.
Once you get to a certain point on the pen you can tell by looking at the lines how much went in, but that won't happen until the plunger moves away from the bottom of the pen which takes about 4 injections. If I was paying for the forteo my insurance (Humana) charges 25% of retail, but the first year I was on it they had it at a different tier (non preferred brand) so they only charged $60.00 copay and then it went up the following year. Since I'm almost done and have enough pens till the end of June I don't have to worry about it.
When the shot stings, which isn't often, it's usually because I hit a vein or nerve, because it sometimes causes a little bleeding. 20 mcgs isn't much of a shot, so I injected it into a bowl after I was done with the pen and it's really a small amount of liquid. At the end of the month you'll see how much is left that you have to waste, so at that point he could do what I did and see how small the amount is by injecting the left over (one shot) into a bowl and see what I mean. Each pen comes with "about" 4 extra shots that you throw out.
I hope it continues to go well...
Last edited by DesertBloom; 02-06-2008 at 01:18 PM.