Osteo...stuff and FORTEO

[Nomad]

Need info about the drug FORTEO:

Does life turn to xxxx when you turn 55? I will turn 55 in a few weeks and this has been the year from HADES.

I have been having back and neck pain. I got a bone density test AT rheumie's office and was also scheduled for an MRI. I called for BD results and they were so so. Nurse said I had Osteopenia and to take more Vitamin D and Calcium and come in to see the doctor after the MRI results were in.

Turns out I have two tiny fractures in my vertebrae. They are old, meaning at least six months old.

I have a hx of lupus and currently have Sjogren's Syndrome. When I had lupus (it was very bad) I had to take A LOT OF PREDNISONE.

The rheumie (same one for 20+ years) says the prednisone caused the "architecture" of my bones to be messed up and even though my bone density was so-so, I couldn't be any closer to getting osteoporosis and in fact, probably already have it.

So.....he wants me to take a daily injetion of FORTEO for two years. It can make you dizzy, etc. I'm upset. Honestly, I just don't even want to step foot into a doctor's office, 'cause it is just more bad news for me.

Anyone take this particular medication? What were your results? Do you feel nauseas with each injection? Does it get better after several shots or do you feel sick with- each shot and if so, how long does it last...like an hour or what? I'm sooooo upset.

 

[Marcie Mac]

SO took it for two years and had absolutely zero side effects. The needle was extremely thin and it was like giving yourself a diabetes shot.

And best of all, it really helped with his bone density. He developed osteo from the prednisone as well.

Marcie

 

[susiestar]

Before taking ANY bone building medications have your vit D level checked. THe problem that I have with D is very rare and in fact most docs don't know that it can even happen. If you do not have enough D in your body, the bone building medications don't work and I have been told it is incredibly painful. My rheumy had a patient with low D who couldn't seem to tolerate any source of D and she insisted on trying a bone building medication. Her husband called 911 when she started screaming in agony. She screamed for hours and pain medications didn't seem to help much (bone pain is very hard to treat I have been told). They put her into a medically induced coma when she was still screaming 12 hrs and enough pain medications, muscle relaxers and valium to sedate a horse later. They tried to bring her out in 3 days and she was screaming before she was fully conscious so she ended up in that coma for six days. She took a weekly form of the bone building medications.

I saw the doctor a few mos after this had happened and he warned me to not ever try a long acting form and be ready for awful things if I tried them at all. He had consulted the pharmaceutical co and the FDA and they were all shocked and worried. There is a group working on Vit D issues and the doctor sent my records to see if they could help. Near as they can figure, my body has had little vit D most of my life and has no idea what to do with it so it rejects it. It means I have to be ready for bad things, and to be careful.

Ask the doctor if it is possible to fix the fractures with cement or stabilizers. Apparently they exist. It is what I have been told to call the doctor about if I get sudden awful back pain. My rheumy and this group studying vit D say they are finding more people with the problem that I have, and it no one has any clue how it happens or what to do about it. (Always what you want to hear from doctors. NOT.)

ust be careful. Find out what it does, and make sure you have enough calcium and vit D in your body to work wth the medications. After that, go with your instincts. Osteo is no fun at all.