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Old 06-30-2010, 05:27 PM   #1
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lonesomedove51 HB User
Been Told Can't Take Forteo

I have been here several times and some have repiled to me. Iam going to ask a question now I hope and pray I get a lot of responses to because I feel Iam at the end of my options. As some of you know, my Primary Physician decided he wanted me to take a Bone Density Test. Iam 58 and will be 59 in Oct this year. When the results came back My T score on my spine came back not to bad at T-1.8. But in sharp contrast the neck of my Hip came back showing a score of T - 4.18. Not too good is it? I was told and diagnosed with haveing severe Osteoperosis. Iam a male which I have learned more women get this than men. I was also involved in a car accident in my 20's and I broke my right Femer in 3 seperate places and crushed my ankel. I finally lost my left leg after surger after surgery after surgery. They took bone from each of my hips to be fused into my ankle. I had screws pins nd nothing worked and I lost my leg which was amoputated below the knee on March 9th 1995. I have also had Rotator Cuff surgery on both sides and have had 3 hernia repairs all in the same oplace on the right side. First of all Iam on disability woith limited income and I was blessed enough to recieve the Forteo at a co pay of $6.50 a month. It took awhile to get it through, but finally I did. So the Dr instructs me to come pick up a starter kit at his office and it is enough of the medication and the needles for a minths time. My co pay was only going to be $6.50 through my Part D pharmacy insurance plan. They have been trying to set up a nurse to call and teach me how to inject myself. As I was reading the booklet that came with it, I learned that if you have had or have ever had a kidney stone it was recommended that you do not take it. Now back to when I was in my accident at 20 years of age I had to stay in yraction for sooooo long, and as soon as I came out of that I was immmediately put in a body cast that came from right up under my arm pits all the way down to my ankles with just a small hole to let Mother Natuire take her course. After coming home in the body cast I dveloped a kidney stone while I was in that cast. It was horrible. I had drwing double pain but in that cast I could not draw double. I just had to holler it hurt so bad. I was taken to the hospital where I passed the stone the next morning after drinking water like there was no tomorrow. I then was released and came home and eventually passed 4 more for a total of 5 in all. But you have to consiser that it was 40 years ago and I had been imobilized for a long lomg time. I believe that is why I developed them was because of my immobiloity for soooo long. So I told my Dr about this. While I was rememberinmg those stones I had passed, I was jolted into remembering I had a sharp pain in my back about 18 months ago. I was taken again to the ER, and after they did a Cat Scan, the Dr came in and told me he had seen a small kidney stone. He gave me a couple pain pills and told me to follow up with my uroligist. Well before I could get the appointment made, I passed this stone as well. I could barely remember this episode but I decided to call the medical records at the hospital; and they had a record of it. After my GP found out I had passed a stone 18 monts ago, he pulled the plug on me being able to take the forteo. He said he would try and figure out what to do now. So although I went through mush stress tryimg to get this medication appoved financially, and did, now Iam not going to be able to take it now. As I said my T score in my hip is T- 4.18. Noy good. He has already told me that Forteo is the ONLY drug in the market that builds bone. He said alkl the others do like Bonive is to keep ypou at the status quoa. Well where Iam at now is very very bad with the reading of t -4.18. Since he told me that Bonive will only keep me where Iam now, Iam going to remain a extremely high risk for a fractuire. And I surely do not want to fractuire a hip. I don't see why he could not allow me to take it buit monitor my kidneys as I did. If problems started to arise then I could stop talkeing it. Now Iam resigned to bevcoming an old man at 59. From now on I will have to be sooooo careful with everythimng I do. I feel loike I have had the rug jerked out from under my feet. What options do I have now folks? Is there anyone else offering any kind of a solution? I am very depressed over this and I don't see why I cannot take it under his oversight, and iof he sees anything going wrong, he can then pull the plug. I wouldn't be so concerned, but I went though hell tryoing to get the financing for it, and now I cannot tale advantage of it. Any advice anyone? IAM AT A DEAD END. I have no other options nut to take the Boniva and stay wjhere Iam. Do you think he is right to pull the plug? Plese many of ypou let me know your views on it. Okay? I will br soo grratful for your imnput. I feel like I am now goimg to jave to live out the remainder of my life wondering when my next fractuire will occur. Thanlk you for the time to read m,u post, anmd let me know what ypou can come up with. Iam all ears. Iam really scared at the future folks. I need help.

 
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Old 06-30-2010, 06:40 PM   #2
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Re: Been Told Can't Take Forteo

I'm sorry you're dealing with this.

Weight-bearing exercise can actually build bone mass, even in adults. With your leg injuries, I don't know exactly what you are able to do, but it's something to look into. Also, balance and strength building can decrease the risk of falls.

It's something to look into.

 
Old 06-30-2010, 11:24 PM   #3
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taape HB Usertaape HB User
Re: Been Told Can't Take Forteo

I'm sorry to hear this. I can understand your disappointment. You probably did alot of work just to get insurance to pay for the medication. It's too bad your doctor didn't notice this before ordering it.

The brochure does recommend those with kidney stones or have had kidney stones not to use the medication. But you might want to get a second opinion anyways from your urologist if your primary care was the only doctor evaluating you for the Forteo.

I would ask whether your kidney's are now functioning normally even though you had some kidney stones in the past, and whether that makes a difference regarding using Forteo or not. Your idea about getting your kidney function monitored while using Forteo makes sense. Taking medications is always a balance between the risks and the benefits.

Let us know what happens next.

Last edited by taape; 06-30-2010 at 11:30 PM.

 
Old 07-07-2010, 11:08 AM   #4
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Join Date: May 2010
Location: Shelby, NC
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lonesomedove51 HB User
Re: Been Told Can't Take Forteo

I wrote my primary a long letter telling him how I felt. The small stome I passed 18 months ago was the first one since I was about 20. Thats a long time almost 40 years. As I tried to explain to him I think haveing a T Score of 4.18 causes a much bigger risk than the kidbey stone issue in my case. I would think they could keep up with my urine annalyses and could tell if I was begginning to form a stoine or not. I have alreadty got thois paid for and have the staryer ket in my refrigirator. I sent him the letter over the week end but he was probably not working Monday after the 4th of July. Iam waiting to see what he says after ge reads my letter. If he still doesn't think I shpuld take it, then what is he going to do instead? Surely he just would not leave me with a Scrore like I have and not do anything about it. I will let you know as soon as I find out what he plans to do. I think the greater risk would be NOT to take it. Iam haveing soooo much pain in my thigh bone I can hardly bear it. I broke it in 3 olaces back in the accident when I was 20. I had no problems with the pain tjhere until the last couple of months. Iam afraid Iam going to have a lot of issues from tjhat accident come back to haunt me. After 30 + surgeries, what else could you expect?

Don

 
Old 07-08-2010, 03:19 AM   #5
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taape HB Usertaape HB User
Re: Been Told Can't Take Forteo

Your letter sounds like a good start. Can you get a referral to be seen by a specialist? Someone specializing in treatment for osteoporosis who could work along with your primary doctor or kidney specialist may be more helpful and understand your concerns. I would be upset too if I was in your situation, with a treatment approved and paid for and being excluded from the medication because of one episode of kidney stones when you have severe osteoporosis,

 
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