It Doesn't Look Good - Osteoporosis Message Board

taape · 04-16-2007, 07:43 PM

I've been off Forteo for 6 months and I just got my recent DEXA scan back ---my T Score is worse than before I started taking it. I did not have a scan 6 months ago but one and half years ago so who knows but the Forteo helped alot in the first year for sure. So I don't have an ending T score right after finishing Forteo.

I have no idea what to do now since I can't tolerate the bisphosphonates and I'm on PPI's which according to the latest medical news can block absorption of Calcium. I exercise everyday and take Calcium and Vit D, and eat tons of yogurt. Any suggestions?

osteoblast · 04-16-2007, 09:44 PM

taape-I am so sorry to hear that your dexa scores have declined six months following completion of your forteo treatment. That has got to be tough. How much did your dexa scores improve from treatment and then did you lose all of that plus some? Don't feel any necessity to share specifics if you aren't comfortable with doing so.

You said that you could not take the bisphosphonates- did you follow forteo with anything? What are ppi's? I have not heard of ppi's. You said that they block calcium though- can you get off the ppi's. This really sounds like a dilemma. I am wondering if other options would be needed like estrogen, evista, calcitonin . If you search on bone physiology there are a number of treatments indicated. Of course, none as strong as forteo but maybe something could hold you over until something new comes out -such as denosumab . The doctors seems pretty positive about that though it may be two years yet. I hope that you can find something.

Is your doctor an endocrinologist? What is your doctor now suggesting?

Also, I am now being tested for celiac to see if it caused my bone loss. I tested positive to one of the gluten antibody blood tests and have to have an endoscopy. I also have very low d and iron stores so the dr. is suspicious. Were you tested for celiac which can be a cause of osteoporosis? If not maybe you should be tested just to rule out something that could cause further loss .

I am hoping that you find something to help!

taape · 04-16-2007, 10:09 PM

HI Osteoblast,
I got up to -2.5 after one year on Forteo however I didn't get another test until last week after being off Forteo for 6 months. So I just know that I was improving and it's hard to believe it went down so quickly. I have yet to see the actual test as I just got an email about the results. Today the results are -3.4 which is past the -3.1 where I started at. I waited around for the past 6 months on the advice of my doctors (endocrinologist and Rheumatologist) to see if I could be in a PTH clinical trial for the patch, but they exclude patients who have already been on Forteo.

PPI's are medicine to treat stomach acid and literature is saying that they block calcium and I've been taking those over a year which overlapped with taking the Forteo. I cuold try and get off the PPI's although it seems like the damage as already been done with respect to bone density. This stomach problem is why I can't take oral bisphosphonates or maybe not the IV version. this is a delimma since I started Forteo because Fosamax made me sick.

I'll let you iknow what the doctors recommend next.

osteoblast · 04-16-2007, 11:12 PM

taape-is the -3.4 for your spine or hips?

Did you always have a stomach acid problem? If you radically changed your diet could you get the stomach acid to go away? Stomach acid is something that I don't have any experience with. I've got a slew of other problems though mostly relating to autoimmune system.

Did the doctor rule out celiac in your case?

montesflus · 04-17-2007, 12:43 AM

TAAPE :

Hi. Many posters on this board have recommended the use of Strontium Citrate as an alternative to bisphosphonates, after the end of the Forteo treatment (mostly people like yourself who can't tolerate Fosamax, Actonel, Boniva). It's no wonder you couldn't tolerate Fosamax, especially with stomach acid! Strontium Citrate has to be purchased on line (it's not usually available in health-food, or drug stores). Just do a ****** search and you'll find a bunch of sites for it.

I can't understand why your doctors left you to wait 6 months after the end of your Forteo treatment regarding your participation in the clinical trial for the PTH patch. They should have KNOWN it didn't apply to people who'd already received Forteo treatment!! If you ask the docs about Strontium Citrate, they'll probably just say that they ''don't know about it''. Most docs are not really that familiar with ''alternative'' teatments. Don't let that worry you

Wishing you the best of luck ......