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Old 10-08-2006, 12:20 PM   #1
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Smile Newly Diagnosed

I had a bone density done recently and the news wasnt good.
The doc called me to her office and informed me that I tested low, very low (-4.5) on my density and was to immediately begin Boniva (which I did) and to take suppliment D & Calcium.

The side effects from the Boniva kicked my butt and with my pain index hitting 9 and every joint and almost as many muscles screaming out in pain, I was wondering if it was worth it to take it.
The insert provided with the Boniva might as well be written in Latin because I had more questions after I attempted to read it than before.

History:
44yo Female
Back/pelvic injury that just wont heal (its been a year)
Gastric Bypass patient (4yrs out)

I tend to malabsorb vitamins (due to the Gastric Bypass) and I am concerned that I am also malabsorbing the Boniva but not enough to bypass the side effects.
Ive only taken the 1 dose so far but am concerned that I will have to endure this and worse each month I take them.

Ive googled but what pops up is more confusing than anything...
and it leaves me very frustrated.

What are other forms of treatment?
Any ideas or suggestions would be greatly appreciated and quite welcome.
Thanks in advance

 
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Old 10-08-2006, 12:43 PM   #2
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Re: Newly Diagnosed

I would ask about being put on Forteo - your T score is low enough to qualify (mine was -3.1 when I started). It works great and I didn't have any side effects. Go to the University Hospital, I'm sure they are aware of Forteo for treatment. The treatment is for 2 years only and I'm at the end of it. The doctor wants me to start Boniva by IV infusion. After reading your post I doubt if I want this at all.

Last edited by taape; 10-08-2006 at 12:47 PM.

 
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Old 10-08-2006, 01:59 PM   #3
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Re: Newly Diagnosed

Hi Sirri: I agree with taape on the Forteo, I'm wondering why the doc put you on oral boniva with your malabsortion problems and surgery. You did mean you are on the once monthly oral boniva, correct, or am I wrong??

Forteo is reserved for people at the extreme fracture risk, and is generally tolerated "much" better than oral bisphosphonates (boniva, actonel, fosamax).

What type of doc are you seeing? With your t-score you should either see an endo or a mineral metabolism doc, and the min met. docs are usually found at the Univ level. Generally you have to have a current doc set up the appt for you, so I would ask about that; are you seeing an Internist, GP?

Forteo is easy to use (daily injection) and should work faster than boniva, however it depends on your system. Don't let the injection part throw you, it is much easier than a regular injection, and it doesn't hurt. You shouldn't have any trouble absorbing it since it is injected sub q (just under the outer layer of skin). Forteo works on osteoblasts to build new bone and reduce fractures, which is somewhat different than the way boniva works.

Here's a link that explains the drug that you should read

[url]http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%20ost eosarcoma%22[/url]

This med is expensive, so I hope you have insurance, and like taape said you can only take it for 24 mos.

When Eli Lily tested this drug, osteosarcoma (bone cancer) was found in the tested rats, but NO humans ever contracted it. The rats were given the drug at 3-60 times the human dose and for 80-90% of their lifetime where humans can only take it for the 24 mos, at 20 mcg daily. The link for cancer in humans is extremely low 1-4 out of 1 million for *non forteo users* with "no" known incidences of it from Forteo users. Anyone who actually contracted the cancer already had bone diseases other than osteo, or where rec'ving chemo, or had preexisting bone cancer already. One key here is it's effect on people who are still growing bone like the rats, throughout their lifetime, children, and pregnant mothers. Humans reach their peak of bone growth at the age of 25-30 yrs of age. All of this is explained in the above link.

I'm also taking it, and so far I have increases in bone marker's (at 5 mos) which means new bone growth, my t-score is -3.6 at the spine. I took actonel for 2 yrs and it didn't work, plus the side effects were pretty bad at times. I see a mineral metabolism doc at Loma Linda Univ, CA and hope she will be able to handle this for me, which I'm sure she can.

Good luck with this... If you have anymore questions just ask, quite a few people here are taking this. The most important thing is to not panic, I'm sure you will get all the help you need if you choose the right docs. Figuring out a solution to your malabsorption problem would be very important, since you surgeon had to know that malabsorption is an unfortunate side effect of gastric bypass. So he/she should have some solutions for it.

Pam

Last edited by DesertBloom; 10-08-2006 at 06:50 PM.

 
Old 10-08-2006, 02:46 PM   #4
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Re: Newly Diagnosed

I only want to add one thing, it would be beneficial to figure out what to do to get your body to absorb calcium, etc. I would suggest the Forteo too as treatment for the osteo, but after the two years, in order to keep your improvement, you need to be absorbing everything normally. Otherwise it seems to me that it would all revert back to pre-Forteo. I have been on Forteo for 16 months and have seen great results. My spine improved 10% the first year and I have had no side effects. Once I am at the 2 year mark, I will have to figure out where to go next, but I am assuming that I will continue to take a diuretic forever(as my doctor prescribed) so that I will continue to absorb all my calcium. I agree that an endocrinologist is a good specialist to start with. I know all of this is new and scary, but hang in there and know that we are all here supporting you.

 
Old 10-09-2006, 07:53 PM   #5
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Re: Newly Diagnosed

Quote:
Originally Posted by taape
I would ask about being put on Forteo - your T score is low enough to qualify (mine was -3.1 when I started). It works great and I didn't have any side effects. Go to the University Hospital, I'm sure they are aware of Forteo for treatment. The treatment is for 2 years only and I'm at the end of it. The doctor wants me to start Boniva by IV infusion. After reading your post I doubt if I want this at all.
I will bring it up at my next doctor appointment.
Thanks for mentioning it

 
Old 10-09-2006, 08:07 PM   #6
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Re: Newly Diagnosed

Quote:
Originally Posted by DesertBloom
I'm wondering why the doc put you on oral boniva with your malabsortion problems and surgery. You did mean you are on the once monthly oral boniva, correct, or am I wrong??
I dont know why she (my Rheumatologist) put me on it to begin with and yes, the dose is 1 pill per month

Quote:
Forteo is reserved for people at the extreme fracture risk, and is generally tolerated "much" better than oral bisphosphonates (boniva, actonel, fosamax).
This is good to know.

Quote:
What type of doc are you seeing? With your t-score you should either see an endo or a mineral metabolism doc,
I am under the care of a Rheumatologist and have just begun seeing a Gastrologist both of which my PCP (internist) referred me to.

Quote:
Forteo is easy to use (daily injection) and should work faster than boniva, however it depends on your system. Don't let the injection part throw you, it is much easier than a regular injection, and it doesn't hurt. You shouldn't have any trouble absorbing it since it is injected sub q (just under the outer layer of skin). Forteo works on osteoblasts to build new bone and reduce fractures, which is somewhat different than the way boniva works.
eeep, injection
I hate needles...but I know I might not have many options especially considering that I have a such a low T Score as you all put it.

Quote:
Here's a link that explains the drug that you should read

[url]http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%20ost eosarcoma%22[/url]

This med is expensive, so I hope you have insurance, and like taape said you can only take it for 24 mos.
Thanks for the link.
Yes, I have insurance which also covers meds, thankfully.

Quote:
Good luck with this... If you have anymore questions just ask, quite a few people here are taking this. The most important thing is to not panic, I'm sure you will get all the help you need if you choose the right docs. Figuring out a solution to your malabsorption problem would be very important, since you surgeon had to know that malabsorption is an unfortunate side effect of gastric bypass. So he/she should have some solutions for it.
Thank you so much for the advice and for your words of wisdom.

 
Old 10-09-2006, 08:14 PM   #7
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Re: Newly Diagnosed

Quote:
Originally Posted by trail
I only want to add one thing, it would be beneficial to figure out what to do to get your body to absorb calcium, etc.
It would either have to be something injected or chewable or maybe a nasal spray, bypassing having to be absorbed in my small intestine (most of which was removed during my gastric bypass surgery 4yrs ago)

Quote:
I have been on Forteo for 16 months and have seen great results. My spine improved 10% the first year and I have had no side effects.
Thats great.
10% improvement is wonderful.

Quote:
I agree that an endocrinologist is a good specialist to start with. I know all of this is new and scary, but hang in there and know that we are all here supporting you.
I will mention this to my internist on Friday
and thank you so much for your kind words

 
Old 10-09-2006, 08:33 PM   #8
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Re: Newly Diagnosed

Sirri,

I was just wondering where your -4.5 T score is...your hips or spine. My hips are -3.6, but my spine is only -1.8. I've been on Forteo for 4 months. You truly don't need to be at all concerned about the needle used for injection...I can honestly say that most times when I give myself the shot I can't feel a thing. Sometimes there is a little pain, but very seldom does that happen. Those needles are very tiny. My thoughts when I found out I was going to have to give myself a daily injection was, "Yikes! How can I do this?" But we all do what has to be done. I'm just praying that by the time I'm finished with Forteo there is something else out there for me to take that won't have bad side effects.

Good luck to you.

 
Old 10-10-2006, 03:25 PM   #9
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Re: Newly Diagnosed

Hi Sirri: I didn't know you were seeing a Rheumatologist for the Osteo, so it wouldn't be necessary to switch to an Endo or Min. Metabolism doc unless you wanted to. Rheumatologists are also specialists in the field of Osteo, so if you like this doc and think you're getting good treatment, then you could easily stay with them.

It doesn't sound like you're tolerating the oral med very well, so ask about the Forteo, if you want, at least you'd be dealing with a med that doesn't have to absorb through your intestines, and it really is so simple to do--doesn't hurt--unless you forget to let the alcohol dry

Remember finding out that you have a problem can be hard to deal with, but it "truly" gets easier every day, and at least there "are" things you can do to fight it successfully!!!

Good Luck...

Pam

 
Old 10-10-2006, 08:55 PM   #10
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Re: Newly Diagnosed

TRAIL:

I was wondering why you say that you'll have to be on a ''diuretic'' forever in order to absorb calcium. Is it because of the absorption problem you mentioned that you had? I had no idea that diuretics help in the absorption of calcium. But then, I'm not a doctor and this is something new for me. What I had heard and read is that calcium, if used together with vit. D, magnesium, zinc and a few others (forgot all of them) - CAN help with the absorption problem.

Just a thought

Irene

 
Old 10-12-2006, 02:30 PM   #11
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Re: Newly Diagnosed

Irene,
I was told by my doctor when I was originally diagnosed that my 24 hr. urine showed that I was spilling all my calcium even though I was taking calcium and vitamin D. I'm not sure if I did it all in the correct combination like I am now, but he told me that I have a weird genetic abnormality that I have probably had since birth but was never diagnosed. I don't know what will happen after I am done with the Forteo, but I think I will ask him if I can try to just do it briefly without the diuretic and check to see if anything has changed. I guess if he says that it's too risky to do that I will go by what he says. I totally trust him and so far he has been the only one who has helped me. He always listens to me and lets me ask as many questions as I need to. I do feel lucky to have found him.

 
Old 11-04-2006, 03:33 AM   #12
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Re: Newly Diagnosed

Sorry for taking so long to respond....
I had other medical issues that were pressing.

I was so floored by what my Rheumotologist was telling me that I couldnt think of many questions and of course I didnt know precisely what to ask her.
I have a follow up appt next week and will get the precise results for the different sections they scanned.
I will also discuss with her the option of using Forteo or take another dose of Boniva (we think I reacted so poorly because my calcium and other vit/min levels were low).


Quote:
Originally Posted by Emptybonz
Sirri,

I was just wondering where your -4.5 T score is...your hips or spine. My hips are -3.6, but my spine is only -1.8. I've been on Forteo for 4 months. You truly don't need to be at all concerned about the needle used for injection...I can honestly say that most times when I give myself the shot I can't feel a thing. Sometimes there is a little pain, but very seldom does that happen. Those needles are very tiny. My thoughts when I found out I was going to have to give myself a daily injection was, "Yikes! How can I do this?" But we all do what has to be done. I'm just praying that by the time I'm finished with Forteo there is something else out there for me to take that won't have bad side effects.

Good luck to you.

 
Old 11-04-2006, 03:40 AM   #13
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Re: Newly Diagnosed

My malabsorption is a concern, most definitely.
As much as I would hate to have to receive my Osteo Treatments and my vit/min's via injection, I am willing to do so.

I adore my Rheumatologist. Shes wonderful.
Shes not big on pain meds though and therefore I am forced to go without, other than the NSAIDs, which do very little for the pain I have.

I hope I am getting better every day.
I dont feel it but I know its like watching the grass grow.
It happens but its so subtle and slow that you wont see it by just sitting and watching.

I wish I knew what to do to help with movement and easing that discomfort.






Quote:
Originally Posted by DesertBloom
Hi Sirri: I didn't know you were seeing a Rheumatologist for the Osteo, so it wouldn't be necessary to switch to an Endo or Min. Metabolism doc unless you wanted to. Rheumatologists are also specialists in the field of Osteo, so if you like this doc and think you're getting good treatment, then you could easily stay with them.

It doesn't sound like you're tolerating the oral med very well, so ask about the Forteo, if you want, at least you'd be dealing with a med that doesn't have to absorb through your intestines, and it really is so simple to do--doesn't hurt--unless you forget to let the alcohol dry

Remember finding out that you have a problem can be hard to deal with, but it "truly" gets easier every day, and at least there "are" things you can do to fight it successfully!!!

Good Luck...

Pam

 
Old 11-04-2006, 03:53 AM   #14
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Re: Newly Diagnosed

I had gastric bypass and that somewhat affects my absorption but something else was happening within me .. so that I wasnt absorbing ANY vitamins which lead to my getting very ill...

I currently take :
50,000 Units of Vitamin D (once a week) (prescribed by doc)
Calcium Citrate - which also has : Vit D, Magnesium and Zinc
B-12 500mg
Fergon (Iron) 27mg
One A Day (Womens) Daily Vitamin (with Calcium)
Glucosamine 1500mg/Condroitin 1200mg

I will have my levels tested next week and will know if my levels are still on the decline or remaining the same/increasing.
My hope is that there is no decline ... that would be good news.



Quote:
Originally Posted by montesflus
TRAIL:

I was wondering why you say that you'll have to be on a ''diuretic'' forever in order to absorb calcium. Is it because of the absorption problem you mentioned that you had? I had no idea that diuretics help in the absorption of calcium. But then, I'm not a doctor and this is something new for me. What I had heard and read is that calcium, if used together with vit. D, magnesium, zinc and a few others (forgot all of them) - CAN help with the absorption problem.

Just a thought

Irene

 
Old 11-04-2006, 03:58 AM   #15
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Re: Newly Diagnosed

I am thinking I have something similar.
They cant blame all the malabsorption on the gastric bypass because most WLS patients dont have this problem and if they do, the majority dont have it at the same level I do, which translates to something unique to me.

Im so glad you have a doc you trust and listens.
We spend so much time repeating ourselves that its nice to have someone in the medical profession that knows your history and remembers your name and spends time with you to help allay your fears and concerns.

Like you, I will need to find out the timing thing for taking these vitamins because I have read that some cant be taken with others ...
and the last thing I want to do is to mess myself up further


Quote:
Originally Posted by trail
Irene,
I was told by my doctor when I was originally diagnosed that my 24 hr. urine showed that I was spilling all my calcium even though I was taking calcium and vitamin D. I'm not sure if I did it all in the correct combination like I am now, but he told me that I have a weird genetic abnormality that I have probably had since birth but was never diagnosed. I don't know what will happen after I am done with the Forteo, but I think I will ask him if I can try to just do it briefly without the diuretic and check to see if anything has changed. I guess if he says that it's too risky to do that I will go by what he says. I totally trust him and so far he has been the only one who has helped me. He always listens to me and lets me ask as many questions as I need to. I do feel lucky to have found him.

 
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