BrittleBones
07-26-2006, 08:27 PM
I am a 50 year old woman who finished a 2 year course of Forteo about 8 months ago. Before starting the Forteo I had osteoporosis with a history of spontaneous vetebral, foot and wrist fractures. My T scores on my 2004 DEXA scan was done for my hip because I had too much metal in my spine to be able to read a scan done on my spine. In 2004 my hip score total was
-3.29 and as of last month it is -3.79. After I finished the course of Forteo I spontaneously broke my right hip and have had 3 hip replacements on that side before getting one that's a "keeper". After the first replacement I was home for about 2 weeks when my femur on the same side as my new hip replacement spontaneously broke, thus letting the new hip "fall" down into the femur space. So it was back to the operating room for another hip. The second one became infected with MRSA, a common germ found in hospitals, which spread throughout my entire system and ended up forcing my surgeons to remove the 2nd hip and causing me to spend 40 days in the hospital with i.v. antibiotics and then 6 months at home with a catheter in my chest so I could continue getting the antibiotics thru i.v. After 1 year at home in a wheelchair without a right hip, they finally gave me this third hip in April and I'm now out of my wheelchair and on crutches! I think this hip is the keeper for sure and I'm very grateful. Now my problem is: My doctor has no real ideas about what I should do now. I have a choice of taking Boniva, but I'm really thinking that if Forteo didn't help me at all, how will Boniva make a difference? I just feel like I don't know where to turn anymore. I have chronic pain and go to a pain management clinic to deal with the aftermath of 12 spine surgeries to fuse all my broken vertabrae, and the pain from my hips and now my left hip feels like it's got the symptoms of an early break. Has anybody had any luck with other treatments once they've gone through the Forteo? Where would you go if you were me? An endocrenologist? Help!!! Thanks in advance for any advice you might have for me. KathyMac
-3.29 and as of last month it is -3.79. After I finished the course of Forteo I spontaneously broke my right hip and have had 3 hip replacements on that side before getting one that's a "keeper". After the first replacement I was home for about 2 weeks when my femur on the same side as my new hip replacement spontaneously broke, thus letting the new hip "fall" down into the femur space. So it was back to the operating room for another hip. The second one became infected with MRSA, a common germ found in hospitals, which spread throughout my entire system and ended up forcing my surgeons to remove the 2nd hip and causing me to spend 40 days in the hospital with i.v. antibiotics and then 6 months at home with a catheter in my chest so I could continue getting the antibiotics thru i.v. After 1 year at home in a wheelchair without a right hip, they finally gave me this third hip in April and I'm now out of my wheelchair and on crutches! I think this hip is the keeper for sure and I'm very grateful. Now my problem is: My doctor has no real ideas about what I should do now. I have a choice of taking Boniva, but I'm really thinking that if Forteo didn't help me at all, how will Boniva make a difference? I just feel like I don't know where to turn anymore. I have chronic pain and go to a pain management clinic to deal with the aftermath of 12 spine surgeries to fuse all my broken vertabrae, and the pain from my hips and now my left hip feels like it's got the symptoms of an early break. Has anybody had any luck with other treatments once they've gone through the Forteo? Where would you go if you were me? An endocrenologist? Help!!! Thanks in advance for any advice you might have for me. KathyMac
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taape
07-26-2006, 10:59 PM
It sure sounds like you've had a very rough time with all the fractures, etc., Was your bone density tested during the 2 year period on Forteo or just in the beginning and in the end? I wonder if the Forteo helped keep it from really getting significantly worse - of course we all expect and hope for improvement. I've had several DEXA's all with improvement and am waiting for my next one. Did your doctor identify any obvious reason for your osteoporosis? I would definitely go see an endocrinologist not just rely on primary care as this is too complicated. I don't know what to suggest. Has your doctor considered hormones, I heard that menopause or premenopause can cause you to loose alot of calcium. I'll be facing the same problem soon of what treatment is available after the Forteo especially since I can't take biophosphates because of my stomach. Let us know if you get into ses a specialist.
BrittleBones
07-26-2006, 11:16 PM
Hi Taape - I only had the DEXA scans before and after the Forteo, not during. And I think that you are probably right when you say that the medicine may have been preventing my bones from losing even more calcium and density than they already were losing if I hadn't been on the Forteo for those 2 years. To answer your question about the reason for my osteoporosis - I had a complete hysterectomy at the age of about 23 without any mention of estrogen replacement therapy. In addition, I started taking prednisone for rheumatoid arthritis and autoimmune disease and synthroid for thyroid disease about 8 years ago. So at the age of about 40, I had the bones of someone much, much older. That's about the time that I started breaking my vertabrae. It was my rheumatologist who started me on the Forteo, but she doesn't feel qualified to go any further with treatment other than to prescribe the Boniva and recommend that I return to Hopkins and seek the advice of an endocrinologist. I would also like to start doing some very low impact exercise to prevent further bone loss and to lose the excess weight that I gained sitting in a wheelchair for a year. I feel so stuck!
spinewhine
07-26-2006, 11:18 PM
I'm so sorry to hear about your continued problems with breaking bones and all of the pain that you are going through. Taape had a good suggestion. When I was first diagnosed, the radiologist who did the DEXA (who also does my mammograms) said that if I'd been on hormone replacement, the bones would not have gotten so bad. Maybe there's something there that might help. I'd certainly see an endocrinologist about what's going on with your bones.
I wish you the best of luck in healing from these terrible breaks and I hope that your pain eases up.
I wish you the best of luck in healing from these terrible breaks and I hope that your pain eases up.
CrohnieToo
07-27-2006, 10:49 AM
I am so sorry to read of all you have gone thru, KathyMac!!! You've really had a rough road to hoe!
The general consensus is that a bisphosphonate is needed after the two years of Forteo to maintain the good that Forteo was able to do. It is too bad you had to spend so much inactive time whilst you were on the Forteo and that might well be why you didn't see improvement w/the Forteo. There is always the option of IV bisphosphonate rather than the oral.
If I remember right, Evista (hormone therapy made by Eli Lilly) has had some good success w/osteoporosis w/and w/o Forteo.
By all means, see an Endocrinologist. And given the problems you've had an Endo at Hopkins sounds like an EXCELLENT idea!
You can help yourself just by doing some theraband stretches and then some very light weight hand weights. I wouldn't try ankle weights until and unless you feel good and steady on your feet. See if your local hospital offers exercise/rehab sessions for osteoporosis. You want to be doing the right exercises for your hip and spine and osteoporosis, not aggravating the situation.
Good luck and God bless!!!! :wave:
The general consensus is that a bisphosphonate is needed after the two years of Forteo to maintain the good that Forteo was able to do. It is too bad you had to spend so much inactive time whilst you were on the Forteo and that might well be why you didn't see improvement w/the Forteo. There is always the option of IV bisphosphonate rather than the oral.
If I remember right, Evista (hormone therapy made by Eli Lilly) has had some good success w/osteoporosis w/and w/o Forteo.
By all means, see an Endocrinologist. And given the problems you've had an Endo at Hopkins sounds like an EXCELLENT idea!
You can help yourself just by doing some theraband stretches and then some very light weight hand weights. I wouldn't try ankle weights until and unless you feel good and steady on your feet. See if your local hospital offers exercise/rehab sessions for osteoporosis. You want to be doing the right exercises for your hip and spine and osteoporosis, not aggravating the situation.
Good luck and God bless!!!! :wave:
newbones
07-27-2006, 11:43 AM
KathyMac,
I can't add much to what the others have replied. I agree that you probably need to see an endocrinoligist or some type of specialist. I can't imagine all the pain and suffering you have gone through. I hope you find some help and relief soon and are able to get back on your feet. Best of luck to you.
I can't add much to what the others have replied. I agree that you probably need to see an endocrinoligist or some type of specialist. I can't imagine all the pain and suffering you have gone through. I hope you find some help and relief soon and are able to get back on your feet. Best of luck to you.
BrittleBones
07-27-2006, 10:19 PM
Thanks to all of you who have responded to my plea!! It's great to be able to come here to get ideas and suggestions from others who have travelled down the same road that I have gone. I think everyone agrees that the endocrinologist is the best bet and since I've had all my surgeries for my spinal fusions and one hip replacement done at Hopkins in Baltimore, I'll ask my spine surgeon to refer me to a good doc up there. I'll let you know what happens. Thanks again folks!! KathyMac
taape
08-02-2006, 10:06 PM
My 2 years on Forteo will be up at the end of next month. I saw the endocrinologist and I can not continue on with Forteo. I did get an increase in bone density but I won't know exactly how much total since I'm not due for another DEXA scan for 6 months. There are alternatives for treatment including IV Infusion of biophosphates - see my other post. We can't go without treatment.
DesertBloom
08-25-2006, 08:40 PM
So sorry to hear about your problems, and seeing an Endo would be a good idea, but I'm wondering if John Hopkins has a "Mineral Metabolism/Osteoporosis Research Department"? I don't have the severe problems that you do, but I'm going to that type of clinic at Loma Linda Univ. and they seem to be the doctors that have the newest research available. You must be extremely courageous, keep it up...
Good Luck...
Pam
Good Luck...
Pam
minny51
09-08-2006, 02:26 PM
I am sorry for all the pain you going thru, I have only just started this journey and very scared , I have osteopenia and I already have 5 broken ribs, a fracture in my wrist and anlkle. Remember the imput you give to every one can help others and this also eases your pain knowing people care. Keep you chin Up.
minnie51
minnie51