I'm 53 with osteoporious. The ortho dr recommended Forteo
The ortho dr said I would be crippled in 10-20 years because of my age (53), that's why he recommended Forteo, since that is the only medication that builds bone. My T-Score for my back is -2.7, and I have osteopenia in hip area. I have kidney stones so my endo dr said I'm not a candidate for Forteo. I took Fosamax for a month, but caused havoc on my stomach. I was scheduled for Reclast, but cancelled because of the serious side effects, "jaw bone death" being one of them. I'm not taking anything, and very worried, please help!
Hi Pat, welcome and thanks for your question. Gosh I'm sorry you can't take the Forteo. If you don't want to take Reclast, then the only thing left is Evista, or Fosteum. If you've ever had any problems with blood clots though, you wouldn't be able to take Evista. I don't want to disuade you but the chances of getting osteonecrosis of the jaw from Reclast are very small. This still can happen but the figures on it are still very low. But I fully understand your reluctance, and you must do what you think is best.
There is another supplement you could look into called Fosteum. You need a Doctors prescription to get it, and it does contain soy, so if you have any allergies to that or have a reason you can't take soy you would have to consider that. You can read about it here in a Sharepost I wrote on it. Check all the comments on this article because one of the links was updated by me in the last post on Fosteum.
I took Forteo and did really well and hadn't heard about the kidney stone issue but if your Dr says that its something you can't take then you would have to follow his or her advice.
There is a new drug that "might" be approved by the FDA, but that will take time and we don't know for sure if it will happen but you can read about Prolia aka Denosumab here from our expert patient PJ Hamel.
Good luck finding something and if you have another question just post again. If I can think of anything else I'll let you know.
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Hi Pat, I thought of something else that you should read to help with your decision. There's also the options of HRT (hormone replacement therapy) and Miacalcin nasal spray. If you aren't aware of the precautions of HRT read about those, and Miacalcin is used when none of the other drugs are suitable.
Here's an update on Prolia, so you have a better idea on when or if the FDA will approve it. This was written by our patient expert PJ Hamel, as was the other I mentioned.
Good luck finding something you can take.
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Pat
Sunday, November 15, 2009 at 11:10 PM
Pam Flores
Monday, November 16, 2009 at 10:19 AM
Hi Pat, boy this must be hard having your Dr.'s disagree. Yes I took Forteo and did really well. I went from severe osteoporosis to osteopenia and normal bone density in 2 years. I didn't have any side effects, and am taking Evista now. Forteo is very easy to use and the injection really doesn't hurt. If your insurance co is paying for it you are very lucky.
Here's a link on a Forteo discussion we had a while back if you want to read this. Our members talked about their experiences with Forteo.
I hope you get the Drs to agree and good luck with the Forteo.
Pat
Monday, November 16, 2009 at 07:31 PM
Hi Pam, that's great you're doing so well. I did get the ok this morning from my urologist, but the endo dr's not on board even though she initially ordered the Forteo. She wants to get the results of my 24 hr urine collection. I was secreting calcium, but I lowered my sodium intake considerably and taking 12.5 mg Hydrochlorothiazid daily since this past September. Worse news, my daughter, age 35 was told today she has osteopenia. My osteoporious promped her to get a dexascan. I was looking at this site, which is great by the way, and read about milk ribonuclease-enriched lactoferrin as being a bone builder. That's not like Forteo, is it?
Pam Flores
Monday, November 16, 2009 at 08:42 PM
Hi Pat, sorry your urologist is not onboard, but it's really good to have the 24 hr urine test anyway, even for those that aren't loosing calcium that way.
Sorry to hear about your daughter, but this is happening more and more in younger people, especially in those who breast feed or have some other causes for bone loss. Have her read the link above on Fosteum, it's approved for premeno women as well as post. I don't know anything about OsteoDenx which is what you were referring to. It seems very expensive to me, since you can get most of the ingredients at a health food store. But it could be really good I just don't have any personal experience with it.
You can look it up (OsteoDenx) using the name Dr. Naidu-OsteoDenx or the lactoferrin. I don't know of any other Drs that will recommend it, but these new supplements always take time for main stream medicine to agree with it, because at first they are always skeptical about them. OsteoDenx/Lactoferrin isn't anything like Forteo. If you haven't read the Cleveland Clinic article on Forteo it's very interesting and explains how it works, here's the link, since it's the only drug that stimulates new bone growth; all the others just slow bone loss down.
Hopefully the hydrochlorothiazide will help your calcium urine content. Just be sure to stay on top of this since you don't want to excrete all your calcium this way. You will loose some but a lot is not good. Try to read the entire Cleveland Clinic pdf, it's very informative and easy to read and worth the time. It will also explain how it affects your calcium and vitamin D levels.
We're glad you like our site, thanks for the compliment. Check the home page for Shareposts by me and PJ Hamel for articles on osteoporosis topics that may interest you. You can click "osteoporosis home" above on the top left or click here. We'd love for you and all members to join our discussion there.
Good luck and if you have any more questions just post again.
Hi Pat, I ran across some information on Forteo and kidney stones and wanted to mention it to you. Your Drs will still have to make this decision and since you are going to start this med, just be cautious an alert to any kidney problems.
Here's the quote from the Important Safety Information from Eli Lily on this topic, so you'll know what it says.
"Before you take FORTEO, you should tell your healthcare provider if you have Paget's disease of bone or other bone disease, have cancer in your bones, have trouble injecting yourself and do not have someone who can help you, are a child or young adult whose bones are still growing, have or have had kidney stones, have had radiation therapy, have or have had too much calcium in your blood, take medications that contain digoxin (Digoxin, Lanoxicaps, Lanoxin), or have any other medical conditions (Eli Lily-Important Safety Information 2009)." This previous link takes you to the full explanation on the Important Safety Information from the Drug company.
Sorry I wasn't aware of this, but now you have the information. Let us know how you do on this, and good luck!
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Thanks so much, I really appreciate all the info. I talked to the ortho dr again, and he stands by the Forteo because of my age. The manufacturer says to take Forteo with caution if you have kidney stones. I guess I would just have to have frequent ultrasounds of the stones. I just want to be on some medication, and want the endo, ortho and urologist to get on the same page. That's a shame they don't talk. I've been going back and forth. Also there were two things elevated on my bloodwork, and one dr said it was overkill, but the blood dr ordered a skeletal survey to rule out multiple myloma. Everything was ok. This was all in preparation of starting the Forteo by the endo dr, and while I was waiting she started me on Fosomax, took it for a month, but upset my stomach too much, and then she ordered the Reclast. I feel like I'm going in circles. This has been going on since September. I see the uroligist tomorrow, and if he gives me the ok I'm going to tell the endo dr I'm started the Forteo. You said you were on it, did it help? Did you have any side effects? I know there are some scarry ones with that too. Thanks again, you uplifted my spirits!