forteo and bone pain

Hi,

I just wanted to let you know I got your message.  I will get out my my records and tell you what the diagnosis was.  My doctor, in Denver, sent the biopsy to a doctor at Creighton in Omaha, there are only a few  docs who conduct the pathology.  They are not sure why mine is so bad either, but it is and Forteo was the only choice.  I will try to get that information to you, it might help with your doctor.  thanks, tracy

Thank you!  How are you doing on the Forteo now?   Do you know yet if it is working?  So sorry for all the questions, I'm trying to stay out of panic mode!

Hi,

My doctor said last month that my bones should be 75% better than they were when I started August 2007.  I did have to take about 6 weeks off around the holidays because of the bone pain.  He would like to do another bone biopsy to assess things, however I'm not sure I want to go through it again.  My dexa scan numbers were -2, does that sound right?  I had severe osteopenia to start out with, then in doing blood work, my N-telo.creat, ratio was high, indicating something was going on and thus the bone biopsy.  

This is what my doc wrote in a letter to my insurance company ( I had to appeal for the Forteo)

"I performed a quantitative double tetracycline-labeled bone biopsy for histomorphometry which was read by Dr. Robert Recker at the Bone metabolism Program at Creighton University.  this showed a decreased bone formation rate and decreased mineralized surface, compatible with very low bone remodeling.  these results make her a very strong candidate for the anabolic agent Forteo, which stimulates bone formation.  Her condition is a contraindication for the use of bisphosphonates, since she has a low bone formation state."  He further refers to me as having "severe osteoporosis." 

The Creighton doctor wrote  "...the bone formation rates were all decresed and the mineralization lag time was quite prolonged when measured only on double labels.  The bone formation rates were all depressed and the activation frequency was quite low at .01 per year.  There was only one area of trabecular double label seen in the entire specimen.  Impression:  osteoporosis with reduced bone remodeling. "  He wrote a lot of other technical stuff, that is the gist of it.   The biopsy was important for me though as you can see he says  the bisphosphonates would not be appropriate for my condition. 

I think the forteo is increasing my hot flashes, which I had not had for several months before starting last year, maybe some low grade fever and the bone pain.  The bone pain has not bothered me  as much this past few months.  I had changed the injection to earlier in the day, perhaps that helped.  We are going on a trip next week, by plane and I made a decision to stop the injections for about a month and see if the hot flashes decrease.  I have traveled with it and there is no problem, but it is time for another holiday for me right now, and in doing so I feel somewhat empowered and the drug isn't controlling me.  It was really funny, shortly after I started Forteo, we had to travel out of state, I was showing the security guy the drug, etc. and he told me to "take a deep breath", he said "we aren't mean", I was pretty nervous I guess trying to get through with my syringe and needles!!

Oh, very importantly, the blood test that was elevated is way down, and my doctor feels that is a very good indicator that it is working.  I try to look at the side effects in the big picture of it is a two year treatment - not forever.  We do not know what I will follow up with,  maybe there will be something new by then. 

If you think of any other questions about the biopsy or anything , let me know, I will try to answer. 

Hi,

    Yes, it definately makes sense.  If you're not making any bone, there's nothing for the bisphosphonates to keep from dissolving  I mentioned this to my doc but she says that I am producing bone.  It sounds like the Forteo is working for you..  I'd love to have .2.  I'm barely holding on to -2.5's.    I have an additional - serious issue - that I hadn't mentioned re: the Forteo.  4 years ago I had a chondrosarcoma removed from my let.  For this reason my doctor says I'm not a candidate for Forteo.  However, if my bones are going to continue to dissolve I sometimes wonder if it might be worth the risk.  My curiousity about your numbers is based on me not really having a clear idea as to how bad my situation really is.. and if the Forteo is worth the potential risk Thanks for the communication, it helps.  ANd congratulations on your numbers.  I think at -2 you only have osteopenia!

Helene

Thanks,

Helene

Hi Sue,

I just re-started the forteo, so hard to tell what is going to happen.  I think it did increase my hot flashes so will "look foward" to that again"!  I still had some off of it, but not so severe.   The bone pain is the worst.  I really believe you and I think the drug is new enough they just don't know what it will do as far as side effects and each person is different.  It does work though, and I seem to have no other option, so am going to try to tough it out.  When I have been off, I keep getting the product,  as my insurance only approved it for the 2 year period, and it won't expire -do you know what I mean?  That would not be a problem if your insurance covers injectables. 

We are moving our son back to college today.  I will get back on my computer again when things settle down - so will try to write more.  Thank you for writing to me, tracy

Hi, I don't know your name, but I hope your trip to take your child to college was a good one.  Wish those days were back for me!!

Thank you for responding.  I am going to my doctor Friday to see what she suggests.  I'm thinking of NOT taking any other meds, as I am distrustful of all of them.  I may just return to the Forteo soon. 

Take care,

Sue