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What are my options, NOW?
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chia6000 posted:
Hello, I have looked at the many posts in this forum and am impressed with the knowledge of its members and healthcare experts who provide valuable information: thank you all so much! I am a 33 year old female. with osteoporosis: t scores of -3. I have taken Actonel/Bonniva in the past, with pretty uncomfortable side effects(even when taken as prescribed- I know the empty stomach requirements, etc), and gave up. I stil take calcium/ Vit D , but irregularly, as they seem to effect my digestion negatively. My last Bone scan showed a worse score than previous ones, and my doctor strongly urged me to start something again. Forteo sounds pretty effective with reasonable /manageable methods of taking it (I can "stomach" injections much better than actually taking pills!) but my insurance provider says they won't cover it- what else can I do? Any thoughts or suggestions would be GREAT. I did have my doctor agree to try to appeal it to get it covered, but it is not looking good.
Thanks for any help!

Erin
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bonebabe responded:
Forteo is a wonderful drug. The injections are really like clicking a ball point pen against your skin.

I think you should contact the manufacturer - Eli Lilly, They used to have, and might still, a program to provide the drug to those who need it and can't afford it. Look at their website.

If that doesn't work, you could look into the Reclast. It's an annual IV bisphosphanate with no gastric side effects. Because it's given in a medical environment, it's normally covered under your medical, not drug, insurance.

If all that fails, keep appealing. Be a squeaky wheel. More often than not, it's the persistence that wins over the insurance companies, not the claim itself.

Good luck.
 
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chia6000 replied to bonebabe's response:
Thank you so much for the guidance- I really really appreciate it.
 
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NATIONAL OSTEOPOROSIS FOUNDATION
Adi Cohen, MD, MHS responded:
Dear chia6000,

It is quite unexpected and rare for a premenopausal woman to receive a diagnosis of osteoporosis or be found to have bone loss. This diagnosis should lead to a careful evaluation to search for possible causes of bone fragility and/or bone loss. The majority of premenopausal women thus evaluated can be found to have a cause, and in many cases, identification of a contributing condition can help to guide management of the affected individual.

There is less information available about treatment options for premenopausal women than for postmenopausal women with osteoporosis, because the condition is uncommon. In general, medications for osteoporosis should be used with caution in premenopausal women because less information is known about how they will affect young women in the short and long term. Because the diagnosis of unexplained osteoporosis is so rare in young/premenopausal women, those who receive such a diagnosis might also consider participation in research to help all of us learn more about the condition and about treatment options. For information about research protocols available, visit clinicaltrials.gov.
 
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chia6000 replied to Adi Cohen, MD, MHS's response:
Thank you both very much for the replies- I am going to try Forteo. Starting next Tuesday. I just know that if I am 33 years old with poor bone quality NOW, I better address it NOW rather than be miserable later on in life.


 
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PVTEYE1 replied to bonebabe's response:
I would like to know if their are any other options other than Forteo. I do NOT want to use injections. I fractured two bones in my ankle and it has now healed , I did it 5/25. I would like other options other than injections. The arthritis specialist will not suggest anything else. She is set on me doing injection, I said NO. What else can I do. I also had a vitiman D definancy.
Chris S.
Grandville,MI
 
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An_223971 replied to bonebabe's response:
I am midway through my third month on Forteo. It does appear to be a good drug. But as someone who is actually on the drug, I wanted to share my perspective regarding the injections.

Yes, there are occasions that you feel nothing when you give yourself the injections. There are other times you do feel a prick and a couple of times it actually hurt. I was told I might have hit a tendon. I have also had a couple of bruises from the injection.

In fact, Lily mentions pain and bruising as a side effect. And I did get training from the Lily nurse on injection technique and rotate the sites. The discomfort is not usually significant but the injection does not always feel like a ball point pen against your skin. I am thankful when it does.
 
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bonebabe replied to PVTEYE1's response:
The Forteo is the best osteo drug currently available. If your doctor is insisting on it, ask her why that particular drug. What are your objections to injections? The needles? This drug is far more effective than the oral meds because it actually grows new bone.

There are two other options if you don't want regular injections. Reclast is given by a 15 minute IV once a year and the newest drug, Prolia, is a shot that given twice a year. Both are excellent drugs.
 
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leescriv replied to bonebabe's response:
Reclast did not help me. My T-score went from -4 to -4.5 in one year.VERY DISAPPOINTED. Expected good results. Now on Boniva. Since Fosamax did not help me either, I don't think Boniva will either. Do I have any other alternative. I took Forteo for two years and only thing that gave me an increase in my T-score, but you can only take Forteo 2yrs lifetime. Am I taking enough Vit D (800 units a day)?????????????Help leescriv
 
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bonebabe replied to leescriv's response:
Normally DXA's are done every 2 years because bone is so slow to respond to treatment. Your loss, and the lowness of your scores, in a one year period needs further looking into.

You don't say how old you are or if you have other health problems. If your doctor hasn't already done it, I'd ask about being checked for some reason that your bone density is so low. It may be that your osteoporosis is secondary to something else going on.

Your Vitamin D levels are certainly important and play a big part in your bone health. Have you had your levels checked? If not, do that. It's a simple blood test. If you're low, you'll be given booster doses to fill you up then you'd maintain with 1000 IU a day.

Also there is now a new drug, just approved in June, called Prolia. It's being given as a followup to Forteo and is given as 2 injections a year. That might be an option for you.

I hope this gives you some information with which to have a conversation with your doctor.
 
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runningmom10 replied to bonebabe's response:
Hi bonebabe --

Please tell us more about the Prolia. This is the first I have heard of it. I am in my second month of Forteo. All seems to be going well. Yes, sometimes I feel the prick, others I don't. It is only momentary and I can deal with it if it is in fact going to work. My endo suggested that I might be taking the Reclast when I complete my 2 years with Forteo, but I would like to know more about Prolia. What is it, side effects, effectiveness, etc.

Thank you!!!
 
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bonebabe replied to runningmom10's response:
Prolia is the newest osteo drug. It was approved in June and is a bisphosphanate that is given by injection twice a year (every 6 months.) It is approved for postmenopausal women and is another option for those who can't tolerate oral meds. So far, to our knowledge, we only have one patient on this drug. She had her injection two weeks ago and is fine.
 
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Louise_WebMD_Staff replied to runningmom10's response:
Here is some information we have about Prolia:

FDA approves Prolia for High Risk Osteoporosis

A paragraph in another article about Osteoporosis Treatments : "Prolia is a so-called monoclonal antibody -- a fully human, lab-produced antibody that inactivates the body's bone-breakdown mechanism. It's the first "biologic therapy" to be approved for osteoporosis treatment . Prolia is approved for postmenopausal women with osteoporosis and high risk of fracture, and when other osteoporosis medicines have not worked."

Here is the information on side effects, effectiveness, etc about Prolia from RXlist
 
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runningmom10 replied to Louise_WebMD_Staff's response:
Thank you! I will be looking into this. Hopefully by the time I finish the Forteo, there will be more information regarding results of Prolia treatment available.
 
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NATIONAL OSTEOPOROSIS FOUNDATION
Susan Randall, RN, FNP-BC, MSN replied to runningmom10's response:
You may also be interested in my latest post about denosumab (Prolia) at http://forums.webmd.com/3/osteoporosis-exchange/forum/449?@guest@ . I hope it is helpful to you!


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