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!
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Q: I'm 53 with osteoporious. The ortho dr recommended Forteo
Answers (3)
11/12/09 4:45pm
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.
11/15/09 7:52pm
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.
11/16/09 10:19am
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.
11/16/09 7:31pm
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?
11/16/09 8:42pm
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.
11/17/09 5:35pm
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!
11/24/09 11:15am
Thanks Pam, yes I did read this, and of course I'm scared to death to take it because of the osteosarcoma. My uroligist says we can get KUB (xray) and 24 hr urine cultures, maybe every 3 months to keep a handle on the stones. My main concern now is the bone cancer. The Forteo is in my refrigerator, haven't started it yet because I didn't realize I needed a Rx for the needles. I just assumed that it was a complete kit. Also while reading up on Forteo, it seems like older people with lower t-scores are taking this drug more than someone like myself with a -2.7 score in my back and osteopenia in my hips, and no fractures. I wish I could make a decision, the more I read the more questions, concerns and reluctance I have. My endo dr doesn't come out and say whats best for me. How do I know, I'm only going by what the ortho dr said.
Still confused as ever...
12/16/09 6:57pm
Hi Pam, I finally started the Forteo 11/30, and I did have some mild flu-like side effects for the first week or so, but I must say it's not as bad as all the negative responses I've been reading. I have a question about how much vit D should you take while on Forteo.
Initially my vit D level was 26 back in Oct (without supplements) my endo dr said to take 1500 iu's daily, and now it's 33. I went to a Rheumatoid dr before Forteo, and she gave me a Rx for 50,000 iu's a day for 8 weeks. At that time, she thought I was going to get the Reclast infusion, but I didn't fill it. I've been to a dietician, and although she doesn't know anything about Forteo, she recommended I take 25,000 daily for 4 weeks, and then 5,000 daily. The pharmacist wouldn't fill the Rx for the 50,000 once I started the Forteo, and said to ask the dr that prescribed the Forteo. Well, I did. She said, "there's no right answer". I'm very tired, and don't feel like any activity. I think I do need to get my levels up more. The dietician said the new guidelines are going to be 50-100 instead of 32-100. I did start to take 2000 a day, but when reading about the studies on Forteo, I think they recommend like 800 a day. Can you shed some light on this?
12/16/09 7:31pm
Hi Pat, I'm glad your side effects from Forteo are mild. Remember what you read on the Internet is always going to amplify the negative and those who are doing well (a lot of people) don't post about their positive experiences because they are either out living their lives or feel they have no reason to give their positive stories. The negative press will always "look" like it out-numbers the positive and the reason above is all I can think of to explain it. All you have to do is look at the stats on the numbers of those taking it and refilling it over and over until they are done.
Take all negative and positive reviews with a grain of salt, since we don't know these people personally.
As far as the D goes, I would follow your Drs recommendation. The current NOF recommendations for D is 1,000 IUs a day, but that was written a while back, and is based on those with normal levels. The Forteo recommendation is from 2002 and those recommendations are out-of-date.
Generally the Drs base your dose on you 25 (OH) D score, so if your Dr doesn't think 26 is high enough that may be why he/she recommended the high therapeutic dose. It's true, that right now there is no right answer since each of us have differing reasons to take a particular amount of D based on our lab score and other factors. So each of us would have different recommendations. The high dose won't hurt you and it's only given for several months until your score goes up. And yes I've heard the same thing that they want to change the optimal range from >30 to 100 to the >50 to 100 so you'll just have to do some reading and trust your Drs opinion since it's really hard to get into the dangerous/toxic level of vit D for the majority of people on the varying doses you mentioned.
Good luck and let us know what you decide, if you want to, and how well you do on the new D dose. Just remember the Forteo recommendation was written a long time ago, and things have changed a lot.
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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!