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Monday, April 26, 2010 Susan asks

Q: Boniva or reclast infusion for osteoporosis with lower spinal t-scores?

I am a 61 yr old woman with medicine induced osteoporosis. Which is recommended for lower t-scores of the spine, Boniva or Reclast infusions? I have taken Boniva quarterly infusion for a year and have read that Boniva is better for hip bone building than spine so I am looking for a recommendation for an infusion that is good for both spine and hip. I cannot take pills.

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Answers (1)
Pam Flores, Health Guide
4/26/10 6:13pm

Hi Susan, welcome... Boniva and Reclast are very similar, but you're correct about varying action on the hip and spine.  Did the Boniva raise your t-scores any in the year, or do you have to wait to have your next dxa?  I would double check this with your Dr. and make sure that you aren't having any bad side effects from the Boniva.  If you aren't having any problems, then hopefully Reclast wouldn't cause any either.

 

Just be sure to read as much as you can on both of these meds, and discuss the idea of a medication holiday with your Dr. after you've taken it for 5 years, if you do this.  Some people are experiencing fragility fractures from the bisphosphonates (Actonel, Reclast, Boniva and Fosamax) after long-term use.  The figures on those who actually have this reaction are still being debated, so if you want to read more about this possibility see this link on long-term bisphosphonate use.

 

Good luck and be sure to do some research so you can make an effective decision since it is up to you.

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4/26/10 7:02pm

Hi Pam and thank you so much for your quick reply. About 2 years ago I asked a question of this site when I was first deciding to take Boniva IV. I was wary about the whole dental question. Your answer allayed my fears and I have been on Boniva IV for almost 2 years now. Unfortunately, my original t-scores were from Kuwait where I was working and the last one is lost to compare to the one recently from LA last Spring. The reason I write now is because I want to compare dexa scores before my next Boniva infusion which is the last week of May. If they are not improved, or even worse, my Dr. may decide that Forteo might be worth trying. I am all for that with the exception of the daily shot (I've done this before since I have relatively low level MS but I became allergic to that injection so had to stop) but really would love to avoid this. Thus my asking about Reclast which I heard was better all around for all bones, where Boniva seems to be better for hips. I also hear there is a new bone building drug about to be FDA approved, possibly this July. Do you know anything about that? That might avoid the whole fragility fracture issue, do you think? Speaking of which, what do you think of bone building Forteo apart from the extraordinary cost!?

Thanks for any info. Sincerely, Susan Davis

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Pam Flores, Health Guide
4/26/10 8:47pm

Hi Susan, if you can wait to compare your dxa scores that will give you some valuable information.  With regards to Forteo, I'm biased because I took it and did really well on it with no side effects.  My scores improved radically.  As far as the injection goes, it's nothing like a intramuscular injection.  The needle is really small and you only inject it sub q, into the cutaneous tissue just below your skin.  I rarely ever felt the injection and the needle is the size of an eyelash.  Most people have no trouble with the injection because it comes in a pre-metered dose pen and you don't have to draw up a syringe with a long needle.  They also train you on how to inject it which is a simple class.

 

The drug you are referring to is Prolia (aka denosumab) which hasn't recieved final approval from the FDA, but it looks promising for possible release in July.  This is a mono-clonal antibody so it works differently than the other drugs.  Of course it also has side effects, as do all drugs, but not the same ones as the bisphosphonates.  I had heard that it may be reserved for those with low t-scores so that would mean a score less than -2.5, but that could change, I'm not sure.  It's given twice yearly, so it would be convenient, but do as much reading on it as you can, and discuss it with your Dr., and when/if it gets approved check to see if your insurance will cover it.  When new drugs come out, not all the insurance companies cover it but you may have one that does.  Unfortunately you wouldn't be able to find out about this until it is approved.

 

Here's an article on Forteo if you haven't read it from the Cleveland Clinic that is relatively easy to understand.  I don't want to influence your decision since we all react differently to these drugs.  Forteo is also reserved for patients with low t-scores, but some Drs will prescribe it anyway if there are mitigating factors in your medical history, like previous fractures, or not being able to improve/tolerate one of the bisphosphonates.  And yes it is very expensive, so be sure to check with your insurance co to see if it is indeed covered, and as you know it also has side effects I just didn't experience those.  We did a question of the week on Forteo if you'd like to read others experiences with this drug.

 

I hope this answers your question.  Good luck deciding and post again if you have another question.

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4/27/10 3:50pm

Hi Pam, Thanks again for the informative answer you sent yesterday. I will speak to my Dr. about either the blood or urine 24 hr test instead of a new dexa since the last ine I had was just last August. Are these tests, blood and/or urine, also as good an indicator for people who take Boniva IV, as it is for people taking Forteo?

My t-scores from Aug. 09 are: Hip right -1.6  and left -1.3. Spine is a different story at -2.8.

I do have just a few more questions:

1. I began reading about Prolia (Denosumab [what an awful name]) and the side effects sound worse than the other drugs; serious skin infections and cataracts.

I have read the Cleveland Clinic article about Forteo some time ago and if the worst effect is leg cramps, which, as one woman said, "magnesium and an evening banana can cure", and your description of the injection eases my mind considerably - surely it cannot be that easy and there must be other potential nasty side effects. I read that it can cause lightheadedness, I already have ms which occasionally compromises my balance, so this might be a consideration. Suppose I took it in the evening? I also take Xanex to counter anxiety at night so I will ask my Dr. if this would be a problem. Other pronounced symptoms?

2. I fear I am beginning the Osteonecrosis of the jaw(?) syndrome from Boniva IV or maybe it's that I am anxious and tend to clench my jaws so tightly, so I will have that checked out since I know the syndrome is rare in non-cancer patients. But is it possible from both pill form of Boniva as well as the IV form? There is no clear literature stating that possibility. 

3. Reclast might be OK for me if the ONJ(?) syndrome is not a diagnosed problem. To your knowledge, is Reclast reserved for specific t-scores as well?

4. You wrote about a new drug LP533401, do you know when it will come out of testing? You asked if people would be interested taking it in a post at the end of March? I need more info but it does sound promising as long as it effects only body serotonin but doesn't effect serotonin in the brain - the good mood enzyme.

I've taken BonivaIV for less than two years. If I can tolerate Forteo, I would love to build bones for two years or try the new LP533401 and then return to Reclast or Boniva IV.

Thanks so much - this forum is the best Osteo one on line.Smile

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Pam Flores, Health Guide
4/27/10 7:17pm

Hi Susan, a bonemarker test can be ordered for anyone, regardless of the med you are taking. Just remember that it's not a replacement for a dxa, because it doesn't give you a t-score. It will tell the doctor if you are gaining (formation) or loosing bone (resorption), but it's best to have a base line score first, if you didn't have one of those use your first and second test to compare the results. There are formation and resorption markers that can be done on blood or urine, so whatever the doctor decides. See the article I wrote on this, and the link to the Univ of WA that lists all the different bonemarker tests (formation and resorption) that can be ordered.

 

You can take Forteo at any time of the day and those with lightheadedness usually choose to take it at night, because this is a possible side effect.

 

Do you have any exposed bone in your mouth or pain? Those are the symptoms as well as others. Here's a good explanation on this from the ADA. It's long but worth the read. See pages 8 and page 15 (section 1.7) for the explanation on how this presents. I hope you don't have this, so just stay vigilant on all symptoms and report them to your dentist or oral surgeon. Usually extractions exacerbate this, but it's not the only thing that could cause it.

ADA (American Dental Association) on BON/ONJ. You can get BON/ONJ from either oral or infused bisphosphonates, but the chances with oral are much lower, which you'll read in the link below.

 

http://www.ada.org/sections/professionalResources/pdfs/topics_osteonecrosis_bisphosphonate_report.pdf

 

It could take years for the new drug LP533401 to be approved, and there's also the possibility that it won't be approved, but let's hope so since it doesn't cross the blood brain barrier and won't affect brain serotonin.

 

Also, Reclast doesn't have any restrictions as far as t-scores go.

 

I'll send you some more info on Forteo; just check your site email.

 

Thanks ever so much for the lovely compliment of our site it means so much to all of us!!

 

Take Care...

 

Pam

 

 

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4/28/10 2:43pm

Thank you again, Pam. I think I am armed with most of the info I need to talk with my doctor and dentist. I don't believe I have exposed bone in my mouth, but several other conditions are possible. This could also be potential TMJ related and my dentist and his referral specialists are prepared for that as well.

Based on my past dexa scores, whatever bone marker tests I can have soon, ONJ potential which seems rare, although the paper you sent me really had no specific clinical data relating to quarterly IV Boniva, I think I may like the idea of getting away from IV bisphosphonates even though I have had no trouble with them apart from a few aches and pains and exploring Forteo and building bone if my Dr. agrees. I should know within the month.

Thanks again for your amazing information sharing. Fully appreciated, I assure you.

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By Susan— Last Modified: 02/09/11, First Published: 04/26/10