O/T Osteoporosis--picking your brains!

I've read that Boniva causes discomfort after taking it.

I know Evista has been around a LONG time and with all the news lately about "new" drugs and the "discoveries" about them, I'd go with the one that's been around the longest.

JMHO

Junie, last year I had a density scan that showed Osteoporosis. Started taking Tamoxifen (had just finished bc treatment), calc/with D, weight bearing exercises and Boniva. After 2 months of Boniva, at times, I could hardly walk. My joints/bones ached really bad and it felt as though the insides of my bones were cracking. I went off of it. Decided to take my chances, continue with the Tamox., calc and exercise. I had my one year follow up density scan last week...It showed a 7% INCREASE in bone DENSITY in my hips and an 8% INCREASE in bone DENSITY in my spine...very good news for me. My mom was dx'd w/Osteoporosis years ago, started taking Evista, has had no s/e's and has consistantly regained/increased density. So...from my exp. you may want to consider the tried and true. Good luck...best wishes to you.

The Bone Pain is not unique with Boniva.  It can ocurr with any of the Bisphosphonates. Joan of Ardmore discontinued hers (not sure if it was actonel or Fosamax) because of severe pain in her hands.

Another option may be Miacalcin (which Joan insisted on) --its a nose spray that can help strengthen the bones. No SE's to speak of.  It is not a bisphosphonate---but expect your Doc to make light of it or compare it to peeing in the ocean----(that's the party line!) I'd say its better than going without anything.

 

I posted this FDA warning before but It's appropriate here.

This was issued today by the FDA

Bisphosphonates (marketed as Actonel, Actonel+Ca, Aredia, Boniva, Didronel, Fosamax, Fosamax+D, Reclast, Skelid, and Zometa)
    Audience: Orthopedic Surgeons, other healthcare providers, patients
    [Posted 01/07/2008] FDA informed healthcare professionals and patients of the possibility of severe and sometimes incapacitating bone, joint, and/or muscle (musculoskeletal) pain in patients taking bisphosphonates. Although severe musculoskeletal pain is included in the prescribing information for all bisphosphonates, the association between bisphosphonates and severe musculoskeletal pain may be overlooked by healthcare professionals, delaying diagnosis, prolonging pain and/or impairment, and necessitating the use of analgesics. The severe musculoskeletal pain may occur within days, months, or years after starting a bisphosphonates. Some patients have reported complete relief of symptoms after discontinuing the bisphosphonate, whereas others have reported slow or incomplete resolution. The risk factors for and incidence of severe musculoskeletal pain associated with bisphosphonates are unknown.

    Healthcare professionals should consider whether bisphosphonate use might be responsible for severe musculoskeletal pain in patients who present with these symptoms and consider temporary or permanent discontinuation of the drug.

    [January 07, 2008 - Drug Information page - FDA]

   

Life is definitely unfair.  I went for a bone scan a few months ago, with a copy of my previous scan from 2001.  I actually gained bone in some places and I never take calcium--bothers my stomach and I'm lazy, and haven't done any weight bearing exercise in about two years.  It was probably the only good result I received since this whole BC thing began.  I have a friend, seven years younger, who takes infusions of Zomata (she doesn't have BC) for severe osteoporosis, and in her case it may have been the large number of steriod injections she's had over the years for a bad knee.  Do you by chance get steriod injections?  They can cause bone deterioration.  Good luck in your decision, and you're lucky to have medical folks in the family who can help.

Jane -

I have been Tamoxifen for 2 years. Onc and me have been on the fence too about whether I should switch to an AI now that I'm considered, post-meno. I am 99% sure that now, since I had bone density increase, I will definately just stick with the Tamox.

Chemo might be a culprit, but often it's genetics. Good luck with your decision.

I take Actonel.  I used to take Fosamax. I had stomach problems with the latter.  So far so good with the Actonel. 

My general rule is to see a specialist for osteoporosis! (In our community it is endocrinology, other communities have gyns, rheumatologists, even orthopedists or physiatrists.) Ideally ask if the person is certified by the International Society of Clinical Densitometrists.

Osteoporosis treatment and diagnosis has a lot of subtleties that most gyns, oncs, and primary cares don't have the knowledge/time for. Reading bone densities is an art and I can't tell you how many radiologists can't do it.... (ISCD certified people at least learned how. Not all radiologists are ISCD certified.)

All the bisphosphonates can cause side effects - usually (in my experience) they are very well tolerated. Choose the one that works best for your lifestyle (Boniva is orally monthly, IV every three months; fosamax is weekly; actonel is weekly or monthly - right now the monthly is 1 pill on 2 consecutive days once a month but the once monthly pill should be available this spring, Reclast is IV yearly). They all pretty much have the same side effect profile but the nice thing about the monthly/IV's is that if you're going to have the side effects it's less often. They have some subtle differences in how they work and long-term effects that aren't well understood yet.

Don't expect to see a big increase in bone density on it. Those that do probably (tho not always) are having their DXAs read by someone who doesn't know how to compare results.... (In my experience, again.) 

Miacalcin is totally out of use in the osteoporosis community tho maybe there is a better than nothing thought to it.

Evista is a good medication and is known to prevent spine fractures but did not prove to be effective in preventing non-vertebral fractures in the studies. That said, until we're in our late 70's we're more likely to have spinal fractures (or wrist/ankle but those aren't going to give you life-time disability in the way that a vertebral fracture might).

Forteo is the best but is pretty much saved for those who have had fractures.

Always have your bone density done on the same machine. If you're comparing your own....make sure that the pictures match - is the positioning anywhere near the same? Compare the bone densities (NOT the T-score) of the L1-4 result and of the total hip (not the femoral neck). Find the difference between the two different years of the same part of the body and divide by one of the numbers. In a VERY general thought anything more than a 3% change (up or down) is probably significant, less than that is within the error tolerances of the technology. Never try to compare your bone densities if one was done on a Lunar, another on a Hologic or a Norland. Even if it's an older or newer software or different machine from the same manufacturer it decreases the reliability of the comparison.

Exercise by weight bearing (as in bearing your own weight - picking up and putting down your feet), enhancing your strength and flexibility and balance. Part of what you want to do with exercise is to be strong, etc enough to not fall down. In the winter use Yaktrax.

Take your calcium (if you're on protonix or some sort be sure you're taking calcium citrate, NOT carbonate which needs stomach acid in order to be absorbed - that's the recent news that people on those medicines fracture more). Get your vit D (25 (OH) vitamin D - not 1,25(OH) vitamin D) level checked and if it's under 32 (ask for the number, not just "normal" or not) you need more to bring it up. There's no set standard of how much to take. I suggest 1000 IU of vitamin D3 daily for those who have a normal level and 2000 (or more if needed - I have one woman on 5000) to bring it up if need be. I automatically take 2000 in the winter (or go to Brazil for a month!)

That's my osteoporosis primer. I'm bummed that I'm changing jobs and won't be doing as much osteoporosis work tho I know that some of my osteoporosis patients will be following me to the new office.

Bottom line is - see someone who knows what they're doing!!!!! 

  

Did anyone see on the news last night that now the experts, I think published in the British medical journal, Lancet, are saying that the osteoporosis drugs like Fosamax are WAAAYYYY overprescribed.  These drugs do build bone but now they're saying that they show little effect in preventing fractures.  "270 women would have to take them for 3 years to prevent one fracture of the spine."  end quote  And, the drugs show more even less promise for fractures of the hips.

The experts advise calcium, weight-bearing exercise and a safe environment as being more effective without the side effects.

Tina