Marg001
01-29-2005, 02:45 AM
Hi there,
Just wondering if anybody out there has Osteoporosis and also a bad back?
I myself ws diagnosed with Spondylolisthesis and had Ulcerative Coltis quite a while ago on which I was taking Predisnone for which in turn basically caused my Osteoporosis. I have severe lower back and on a Fentenyl patch for that. But recently I have been having major pain in both my hips, especially when I am walking or even standing for a period of time. Once in a while I get pain in may other joints but nothing like the pain in my hips. I know when I went for my last bone density test they told me it was very bad in my hips. I am at a lost now on what to do to try and help myself. I have an appt. for a Rhumateologist soon. Apparently anyone that has had a bowel reconstruction due to colitis can not tolerate the meds for Osteoporosis.I heard there was some type of I.V. infusions, if anybody knows about this I would love to hear from you or from anyone else that could help me with this. I am at my wits end :confused:
Just wondering if anybody out there has Osteoporosis and also a bad back?
I myself ws diagnosed with Spondylolisthesis and had Ulcerative Coltis quite a while ago on which I was taking Predisnone for which in turn basically caused my Osteoporosis. I have severe lower back and on a Fentenyl patch for that. But recently I have been having major pain in both my hips, especially when I am walking or even standing for a period of time. Once in a while I get pain in may other joints but nothing like the pain in my hips. I know when I went for my last bone density test they told me it was very bad in my hips. I am at a lost now on what to do to try and help myself. I have an appt. for a Rhumateologist soon. Apparently anyone that has had a bowel reconstruction due to colitis can not tolerate the meds for Osteoporosis.I heard there was some type of I.V. infusions, if anybody knows about this I would love to hear from you or from anyone else that could help me with this. I am at my wits end :confused:
Sponsor
Travel
01-29-2005, 12:55 PM
The name of the drug that I know about that is injected is Forteo. There are several threads here about it. You can also go to Eli Lilly Drug Company website to learn more.
Good luck.
Good luck.
Oldbones
01-30-2005, 12:41 AM
Hi there,
Just wondering if anybody out there has Osteoporosis and also a bad back?
I myself ws diagnosed with Spondylolisthesis and had Ulcerative Coltis quite a while ago on which I was taking Predisnone for which in turn basically caused my Osteoporosis. I have severe lower back and on a Fentenyl patch for that. But recently I have been having major pain in both my hips, especially when I am walking or even standing for a period of time. Once in a while I get pain in may other joints but nothing like the pain in my hips. I know when I went for my last bone density test they told me it was very bad in my hips. I am at a lost now on what to do to try and help myself. I have an appt. for a Rhumateologist soon. Apparently anyone that has had a bowel reconstruction due to colitis can not tolerate the meds for Osteoporosis.I heard there was some type of I.V. infusions, if anybody knows about this I would love to hear from you or from anyone else that could help me with this. I am at my wits end :confused:
Hi Marg001...
I had major hip pain for about 3-4 weeks before it got so bad that I had to have assistance to walk. Thankfully, my rheumatologist ordered an MRI on both hips and discovered that my hip was fractured. One doctor had been telling me that it was arthritis. I am so thankful that I have a great rheumatologist. He's very knowledgeable and checks things out thoroughly. I'm on Forteo injections also for my osteoporosis.....just like Travel's post above. Thankfully, I've had no bowel reconstruction so I can't help you there. Hope you find a solution that will help your bones.
~Oldbones
Just wondering if anybody out there has Osteoporosis and also a bad back?
I myself ws diagnosed with Spondylolisthesis and had Ulcerative Coltis quite a while ago on which I was taking Predisnone for which in turn basically caused my Osteoporosis. I have severe lower back and on a Fentenyl patch for that. But recently I have been having major pain in both my hips, especially when I am walking or even standing for a period of time. Once in a while I get pain in may other joints but nothing like the pain in my hips. I know when I went for my last bone density test they told me it was very bad in my hips. I am at a lost now on what to do to try and help myself. I have an appt. for a Rhumateologist soon. Apparently anyone that has had a bowel reconstruction due to colitis can not tolerate the meds for Osteoporosis.I heard there was some type of I.V. infusions, if anybody knows about this I would love to hear from you or from anyone else that could help me with this. I am at my wits end :confused:
Hi Marg001...
I had major hip pain for about 3-4 weeks before it got so bad that I had to have assistance to walk. Thankfully, my rheumatologist ordered an MRI on both hips and discovered that my hip was fractured. One doctor had been telling me that it was arthritis. I am so thankful that I have a great rheumatologist. He's very knowledgeable and checks things out thoroughly. I'm on Forteo injections also for my osteoporosis.....just like Travel's post above. Thankfully, I've had no bowel reconstruction so I can't help you there. Hope you find a solution that will help your bones.
~Oldbones
CrohnieToo
02-17-2005, 12:54 PM
... Apparently anyone that has had a bowel reconstruction due to colitis can not tolerate the meds for Osteoporosis.I heard there was some type of I.V. infusions, if anybody knows about this I would love to hear from you or from anyone else that could help me with this. I am at my wits end :confused:
Hi, Marg. I've had a resection of the mid ileum due to Crohn's disease so we are in the same boat. The meds that it is best for us to stay away from if possible are the oral bisphosphonates, Actonal and Fosamax. However, there are two infusable bisphosphonates I am aware of Zometra (zolendronate) and Aredia (pamidronate). I've had one infusion of the pamidronate. It was scheduled to be a two hour infusion, but I experienced some very mild tingling at the lips and the wrists, so my infusion drip was slowed to a 4 hour rate. That tingling could be considered as a reaction. The day after the infusion I encountered about 10 hours of intermittent traveling bone and joint aches, chilled thru and thru and was queasy tho not quite nauseous. Due to the Crohn's giving me a lot of grief with nausea I had good ole Phenergan tabs on hand. They also make me SLEEPY. So, I just popped a Phenergan tab, climbed into a nice snug down sleeping bag under the bed covers and slept 10 hours away. I woke up feeling fine w/no other "problems". As you know, the infusions bypass the intestines eliminating the risk to our Inflammatory Bowel Disease (IBD).
Another option might be the relatively new daily self-injection, Forteo. That would also bypass our poor ole sensitive intestines. My Endocrinologist is "prepping" me for starting Forteo now.
Good luck and God bless.
Hi, Marg. I've had a resection of the mid ileum due to Crohn's disease so we are in the same boat. The meds that it is best for us to stay away from if possible are the oral bisphosphonates, Actonal and Fosamax. However, there are two infusable bisphosphonates I am aware of Zometra (zolendronate) and Aredia (pamidronate). I've had one infusion of the pamidronate. It was scheduled to be a two hour infusion, but I experienced some very mild tingling at the lips and the wrists, so my infusion drip was slowed to a 4 hour rate. That tingling could be considered as a reaction. The day after the infusion I encountered about 10 hours of intermittent traveling bone and joint aches, chilled thru and thru and was queasy tho not quite nauseous. Due to the Crohn's giving me a lot of grief with nausea I had good ole Phenergan tabs on hand. They also make me SLEEPY. So, I just popped a Phenergan tab, climbed into a nice snug down sleeping bag under the bed covers and slept 10 hours away. I woke up feeling fine w/no other "problems". As you know, the infusions bypass the intestines eliminating the risk to our Inflammatory Bowel Disease (IBD).
Another option might be the relatively new daily self-injection, Forteo. That would also bypass our poor ole sensitive intestines. My Endocrinologist is "prepping" me for starting Forteo now.
Good luck and God bless.
taape
02-18-2005, 01:24 AM
Marg00l,
I have severe osteoporosis and herniated disc in my back. I believe that the severity of the osteowas caused by the many epidural injections I had for my back which I was told were safe. Hopefully, with taking the Forteo and Calcium, etc., it will improve since I've stopped the epidurals permanently. Can get back surgery until this does get better.
I have severe osteoporosis and herniated disc in my back. I believe that the severity of the osteowas caused by the many epidural injections I had for my back which I was told were safe. Hopefully, with taking the Forteo and Calcium, etc., it will improve since I've stopped the epidurals permanently. Can get back surgery until this does get better.
OppOnn
02-18-2005, 11:57 AM
My husband has spondy and it has been very very painful. He has, at times, even walked sideways. Over the years, he tried everything under the sun. And the only things that really helped him were an expensive injection (only natural ingredients @ $150 a shot) which reallyworked not just for his spondy but also for a painful knee after a car accident. He also tried a machine first developed for or by NASA - he went some 20 times and it kind of stretched him. But it's the natural injection that really works.
I don't know where you live but could recommend where he goes if you can find some way to contact me off this board. I haven't posted for a while so have forgotten if there is one.
I have Crohn's, mild, but am scared of taking any of the osteo drugs. Not that I like to take any drugs and don't even for the Crohn's.
Interesting to know, Crohnie, how your drug works out for you and your stomach.
O
I don't know where you live but could recommend where he goes if you can find some way to contact me off this board. I haven't posted for a while so have forgotten if there is one.
I have Crohn's, mild, but am scared of taking any of the osteo drugs. Not that I like to take any drugs and don't even for the Crohn's.
Interesting to know, Crohnie, how your drug works out for you and your stomach.
O
twisten
02-21-2005, 04:37 PM
I have crohns as well and had emergency surgery 5 years ago because of a fistula. I also have scoliosis, spina bifida occulta, severe myofascial pain in my back and other places, and I get sacroilitis because of the crohns disease. I had a bone density test taken about 6 months ago and now found out I have osteopenia and osteoporosis in my hips and spine. I think mine was partly caused from being on steroids for the crohns but I do have other risk factors such as periodontal disease (I was told this can be an early indicator of osteo) and I am petite. I did think it was odd that the only meds I was put on for the osteo is calcium and magnesium. Maybe its because of the cd?? I see my doc in a week and a half so I'll make sure I ask her why I wasn't put on anything. My memory is extremely poor lately so she may have said something to me and I forgot!! I'll let you know what she says IF I remember to ask her!! LOL.
CrohnieToo
02-22-2005, 05:12 AM
Wow, you certainly have been "blessed" with more than a few nasty health problems! I refused both Fosamax and Actonel due to my Crohn's disease. I'm just NOT willing to take the chance of aggravating the Crohn's with them. However, I have seriously investigated both the IV pamidronate infusions and Forteo. I refused Forteo at first and thus had one pamidronate infusion but after investigating Forteo more thoroughly I am more receptive to trying it in place of the pamidronate. For the time being my Endo is treating me for osteomalacia with vitamin D therapy before continuing pamidronate or starting Forteo.
CrohnieToo
02-23-2005, 11:43 AM
... Interesting to know, Crohnie, how your drug works out for you and your stomach.O
:wave:
First off, O, thanks so much again for referring me to this site! As far as the Forteo, heaven only knows when my Endo is going to be satisfied with this vitamin D therapy and let me start Forteo or re-start the pamidronate. I hope to find out at my next appointment on the 1st of March just what her goal is for the vitamin D level. My PTH isn't down to 30 yet but its getting closer.
As far as that day after my one pamidronate infusion, we were on our way home from Mayo and hubby insisted on taking me to ER as he was afraid, since I was on Imuran, that I had picked up some virus whilst there. ER made no mention of my symptoms being a reaction to the pamidronate infusion, they eventually assumed it was a viral syndrome prior to releasing me from ER. It was only after reading up more on pamidronate that I realized that the 10 hours of symptoms "could" possibly have been caused by the pamidronate infusion. I haven't had a chance to really ask anyone who KNOWS about pamidronate and possible side effects what they thought. Haven't seen the Endo since then and never got around to writing Mayo and asking. Like I said, given the state of my ole bones, I'd do the pamidronate again and just pop a phenergan and sleep the 10 hours away. I'd just rather do the Forteo injections myself at home. More convenient. We shall see.
By the way, I paid for a heel bone test myself ($45) just to see what the results were. On 09 Feb my heel bone density was -1.7 which indicates high risk for bone diminishment. I've never had the heel done before so have nothing to compare this reading with. My Endo did the wrist bone test in her office but I don't remember what she said the score was. -4.0 comes to mind but I could be all "wet" on that. The DEXA scores are the only ones I've kept in mind and kept track of. I'll be asking her when I see her just what that wrist bone score was. I hate having tests done in doctors' offices as you never seem able to get a written result. In fact, I'm guessing she will do another wrist scan when I see her on the 1st. I've still got a lot to learn about this osteoporosis bit.
:eek:
:wave:
First off, O, thanks so much again for referring me to this site! As far as the Forteo, heaven only knows when my Endo is going to be satisfied with this vitamin D therapy and let me start Forteo or re-start the pamidronate. I hope to find out at my next appointment on the 1st of March just what her goal is for the vitamin D level. My PTH isn't down to 30 yet but its getting closer.
As far as that day after my one pamidronate infusion, we were on our way home from Mayo and hubby insisted on taking me to ER as he was afraid, since I was on Imuran, that I had picked up some virus whilst there. ER made no mention of my symptoms being a reaction to the pamidronate infusion, they eventually assumed it was a viral syndrome prior to releasing me from ER. It was only after reading up more on pamidronate that I realized that the 10 hours of symptoms "could" possibly have been caused by the pamidronate infusion. I haven't had a chance to really ask anyone who KNOWS about pamidronate and possible side effects what they thought. Haven't seen the Endo since then and never got around to writing Mayo and asking. Like I said, given the state of my ole bones, I'd do the pamidronate again and just pop a phenergan and sleep the 10 hours away. I'd just rather do the Forteo injections myself at home. More convenient. We shall see.
By the way, I paid for a heel bone test myself ($45) just to see what the results were. On 09 Feb my heel bone density was -1.7 which indicates high risk for bone diminishment. I've never had the heel done before so have nothing to compare this reading with. My Endo did the wrist bone test in her office but I don't remember what she said the score was. -4.0 comes to mind but I could be all "wet" on that. The DEXA scores are the only ones I've kept in mind and kept track of. I'll be asking her when I see her just what that wrist bone score was. I hate having tests done in doctors' offices as you never seem able to get a written result. In fact, I'm guessing she will do another wrist scan when I see her on the 1st. I've still got a lot to learn about this osteoporosis bit.
:eek:
OppOnn
02-23-2005, 12:46 PM
You're welcome, Crohnie Too. I see you've made your usual impressive impact here
with lots of interesting posts to join the interesting ones already here.
I still worry about 100,000 IU of Vit D, in one big go as well. It really does seem a lot to me. Vit D is supposed to be toxic in high amounts. And I always thought we should be taking our vits throughout a day for maximim impact.
But I don't really know, this is just logic speaking.
Interested to know what happens in your doctor's office March 1, and results of any
new tests - like the heel one and the wrist one. -1.7% is not too bad, but -4 whatever would be.
Have you read this book "The Myth of Osteporosis" yet? I must get it.
We are so different! I am still in my Queen of Denial mod, running away from all meds, both for osteo and Crohn's, and you research and try so much. I admire you
while, at the same time, I am always concerned about long term side fx.
I seem to have my Crohn's under control (with no meds) and my Osteo is something
I have to work on more, I know, know.
But am still taking my sophisticated calcium (with D3, magnesium, other minerals),
my Vit K to help get the calcium to the bones...3mgs Melatonin...Omega 3/6 Fish
Oils (@ 4/day but want to work up to 6/day - they're so huge!)...I'm also taking
a sophisticated very good 2 a day multi vitamin...I'm eating all the things I
should, usually organic, mostly home-made (by Mr. O!) walking up 3 flights of stairs,
sometimes umpteen times/day...walking (but weather so lousy in winter)...
but I am not exercising enough and must do more (the same old tune, finding
excuses not to)...
And now I want to lower my homocysteine levels because I had a blood pressure
scare in a heart doctor's office - although bp was fine in my own doctor's office.
White coat syndrome? But my homcysteine levels are high. As are, interestingly
enough, my B12 and Folic Acid levels. Don't get that. Last research shows
B12 and Folic Acid are in the homosysteine formula my new holistic, conventionally-
trained heart doctor wants to give me. More research required, with my other
connections. When time. Been and am v. busy.
Good luck to you.
O
with lots of interesting posts to join the interesting ones already here.
I still worry about 100,000 IU of Vit D, in one big go as well. It really does seem a lot to me. Vit D is supposed to be toxic in high amounts. And I always thought we should be taking our vits throughout a day for maximim impact.
But I don't really know, this is just logic speaking.
Interested to know what happens in your doctor's office March 1, and results of any
new tests - like the heel one and the wrist one. -1.7% is not too bad, but -4 whatever would be.
Have you read this book "The Myth of Osteporosis" yet? I must get it.
We are so different! I am still in my Queen of Denial mod, running away from all meds, both for osteo and Crohn's, and you research and try so much. I admire you
while, at the same time, I am always concerned about long term side fx.
I seem to have my Crohn's under control (with no meds) and my Osteo is something
I have to work on more, I know, know.
But am still taking my sophisticated calcium (with D3, magnesium, other minerals),
my Vit K to help get the calcium to the bones...3mgs Melatonin...Omega 3/6 Fish
Oils (@ 4/day but want to work up to 6/day - they're so huge!)...I'm also taking
a sophisticated very good 2 a day multi vitamin...I'm eating all the things I
should, usually organic, mostly home-made (by Mr. O!) walking up 3 flights of stairs,
sometimes umpteen times/day...walking (but weather so lousy in winter)...
but I am not exercising enough and must do more (the same old tune, finding
excuses not to)...
And now I want to lower my homocysteine levels because I had a blood pressure
scare in a heart doctor's office - although bp was fine in my own doctor's office.
White coat syndrome? But my homcysteine levels are high. As are, interestingly
enough, my B12 and Folic Acid levels. Don't get that. Last research shows
B12 and Folic Acid are in the homosysteine formula my new holistic, conventionally-
trained heart doctor wants to give me. More research required, with my other
connections. When time. Been and am v. busy.
Good luck to you.
O
peregrine
02-24-2005, 09:50 AM
My husband has spondy and it has been very very painful. He has, at times, even walked sideways. Over the years, he tried everything under the sun. And the only things that really helped him were an expensive injection (only natural ingredients @ $150 a shot) which reallyworked not just for his spondy but also for a painful knee after a car accident. He also tried a machine first developed for or by NASA - he went some 20 times and it kind of stretched him. But it's the natural injection that really works.O
O, can you at least post the name of the injection? I know several people who could benefit from this.
Thanks
P.
O, can you at least post the name of the injection? I know several people who could benefit from this.
Thanks
P.
OppOnn
02-24-2005, 11:10 AM
O, can you at least post the name of the injection? I know several people who could benefit from this.
Thanks
P.
Thanks
P.
OppOnn
02-24-2005, 11:16 AM
Hello P.
Mr. O goes to a doctor on Long Island for his injection. He says it is a calcium compound but the doctor would not give full details.
If anyone lives on or near Long Island, and believes in alternative options, it would be worth the drive. Mr. O drives quite a way to get there.
He first got the name of the doctor from a book some 10 years ago. The book listed
doctors who believed in this to relieve pain. Can't find the book, but he thinks it is called "Pain, Pain, Go Away" and it was by a Dr. Farber, who he thinks lives or lived
in Michigan.
I hope this is useful. Maybe a ******?
O
Mr. O goes to a doctor on Long Island for his injection. He says it is a calcium compound but the doctor would not give full details.
If anyone lives on or near Long Island, and believes in alternative options, it would be worth the drive. Mr. O drives quite a way to get there.
He first got the name of the doctor from a book some 10 years ago. The book listed
doctors who believed in this to relieve pain. Can't find the book, but he thinks it is called "Pain, Pain, Go Away" and it was by a Dr. Farber, who he thinks lives or lived
in Michigan.
I hope this is useful. Maybe a ******?
O
peregrine
02-24-2005, 11:23 AM
Hello P.
Mr. O goes to a doctor on Long Island for his injection. He says it is a calcium compound but the doctor would not give full details.
If anyone lives on or near Long Island, and believes in alternative options, it would be worth the drive. Mr. O drives quite a way to get there.
He first got the name of the doctor from a book some 10 years ago. The book listed
doctors who believed in this to relieve pain. Can't find the book, but he thinks it is called "Pain, Pain, Go Away" and it was by a Dr. Farber, who he thinks lives or lived
in Michigan.
I hope this is useful. Maybe a ******?
O
The person I am mainly thinking of is in Manhattan, so not far away from Long Island. I guess there's no way to get the docs name, though. Dang! I wish this message board allowed private emails. Thanks anyway
Mr. O goes to a doctor on Long Island for his injection. He says it is a calcium compound but the doctor would not give full details.
If anyone lives on or near Long Island, and believes in alternative options, it would be worth the drive. Mr. O drives quite a way to get there.
He first got the name of the doctor from a book some 10 years ago. The book listed
doctors who believed in this to relieve pain. Can't find the book, but he thinks it is called "Pain, Pain, Go Away" and it was by a Dr. Farber, who he thinks lives or lived
in Michigan.
I hope this is useful. Maybe a ******?
O
The person I am mainly thinking of is in Manhattan, so not far away from Long Island. I guess there's no way to get the docs name, though. Dang! I wish this message board allowed private emails. Thanks anyway
OppOnn
02-24-2005, 11:39 AM
The person I am mainly thinking of is in Manhattan, so not far away from Long Island. I guess there's no way to get the docs name, though. Dang! I wish this message board allowed private emails. Thanks anyway
Dang indeed. This person could get there driving from Manhattan, although the drive woud be somewhat of a pain in itself! What to do? I don't think
I should post the name of the doctor. He is already very very busy so not
looking for extra exposure he probably couldn't handle.
His name must be in the book I mentioned ("Pain, Pain Go Away" by Dr.
Farber.)
Dang indeed. This person could get there driving from Manhattan, although the drive woud be somewhat of a pain in itself! What to do? I don't think
I should post the name of the doctor. He is already very very busy so not
looking for extra exposure he probably couldn't handle.
His name must be in the book I mentioned ("Pain, Pain Go Away" by Dr.
Farber.)
moderator2
02-24-2005, 01:22 PM
I guess there's no way to get the docs name
If you will please just read the posting rules, doctor's names are always allowed.
Name, city and state. No other information, please. Thank you.
If you will please just read the posting rules, doctor's names are always allowed.
Name, city and state. No other information, please. Thank you.
OppOnn
02-24-2005, 02:20 PM
P.
Your friend - and anyone - should only go to one of these doctors
if they are into alternative options, and looking after their whole body
for now, and the future.
One must be into it. Or I think it would be a waste of time.
O
Your friend - and anyone - should only go to one of these doctors
if they are into alternative options, and looking after their whole body
for now, and the future.
One must be into it. Or I think it would be a waste of time.
O
OppOnn
02-24-2005, 02:22 PM
Dr. Christopher Calapai
{address removed - not allowed}
{telephone number removed - not allowed}
O
{address removed - not allowed}
{telephone number removed - not allowed}
O
peregrine
02-25-2005, 07:49 AM
P.
Your friend - and anyone - should only go to one of these doctors
if they are into alternative options, and looking after their whole body
for now, and the future.
One must be into it. Or I think it would be a waste of time.
O
O,
As I think you know, I pretty much only use alternative medicine. Same for my friend. Thank you so much for the name.
P.
Your friend - and anyone - should only go to one of these doctors
if they are into alternative options, and looking after their whole body
for now, and the future.
One must be into it. Or I think it would be a waste of time.
O
O,
As I think you know, I pretty much only use alternative medicine. Same for my friend. Thank you so much for the name.
P.