Fosamax phobia: I have thinning of the... - Osteoporosis Support

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Fosamax phobia

Brittlebone profile image
20 Replies

I have thinning of the femoral neck -2.8 and the recommended treatment for my osteoporosis is either Fosamax or Antonel. Frankly, I have been hesitant to treat this condition. In reviewing the side effects, both appear to have adverse effects on the G.I. System. I already suffer with irritable bowel syndrome, a fairly common issue. Has anyone with IBS elected to use these drugs? Could you share your experience?

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Brittlebone profile image
Brittlebone
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Siamang profile image
Siamang

I too feel that phobia. Eager for positive stories!

RubymyT profile image
RubymyT

Hi ,I don't have IBS , but I have a different gastric issue, I took Actonel for 3 years , I never had any issues. I have now been advanced to Prolia , which I am trying to get off of. Neither of the meds you have to take are injectible, like Prolia , which is great, injectables are in your syetem after an injection , for 6 months and you can't just stop them. With the meds you have a choice of , if you have a reaction, you can stop and try a different med.

I wouldn't be too worried about trying them , like I said any big problem , you can just stop.

When I change off of Prolia , I want to change to Fosamax, when I took Actonel , I didn't take it properly , thats why it didn't work. But the pills you take are great compared to injectables, I'm also going to take natural things to help out a do some of the exercises I have seen doctors suggesting on YouTube.

ORdogmom profile image
ORdogmom

I have gut issues. Not celiac, but lactose and gluten intolerant. Because of this, I was hesitant to try Fossamax, and was thinking of trying Prolia, at least before I started doing my research. Problem with Prolia is that you have to wean off it with something like Fossamax, and I did not want to go to wean off it and find that I could not stomach Fossamax. So, I started with Fossamax.

I have been on it for about a year now, with no stomach issues at all. The only side effect I have noticed is that my mouth gets really dry, especially when I am sleeping. I have started keeping a glass of water by the bed at night it is so pronounced. I think my eyes have been drier too.

It will be another year before my next DXA scan, so I have no idea how much it is helping, but I did do a bone turnover marker test when I first started, and after 3 months the numbers went way down.

A friend told me she has two friends who did injections, and both ended up with severe discomfort because of them. As RubymyT says, the injections last 6 months in your system. That was just not something I wanted to chance.

kristineluna11 profile image
kristineluna11 in reply to ORdogmom

hi what is a bone turnover marker test? I'd like to get one but not sure if it's a scan or blood test? Could you share?

ORdogmom profile image
ORdogmom in reply to kristineluna11

It is a blood test. They have you take it before starting with the drugs, and then again 3-6 months later. Just a blood test ordered by your dictir

Bummedout profile image
Bummedout in reply to ORdogmom

Oh darn it! I just started the meds 2 weeks ago ;(

Brittlebone profile image
Brittlebone in reply to Bummedout

Not all practitioners use the test. Mine indicated her practice uses it only when suspecting noncompliance.

Bummedout profile image
Bummedout in reply to ORdogmom

Actually even though I’ve taken two weeks worth of Alondronate, I decided I’m gonna ask to try to take the test anyways.

ORdogmom profile image
ORdogmom in reply to Bummedout

I was all worried about the drugs, so I made a real push to get the test. The results were so clear that it made me happy I had gotten it, just so I felt better about the drugs. My numbers went down from something like 880 to 225 or so. You want a lower number.

Met00 profile image
Met00

I took Actonel (known as Risedronate in the UK) for a year, during which time my IBS-D gradually worsened. When I stopped the medication my IBS improved markedly.

josephinius1 profile image
josephinius1

I am one year into my osteoporosis journey, have been posting like crazy just lately because I had my first DEXA since my diagnosis, and the natural (mostly) route yielded way better improvements than expected. It could be partly because I had a lot of room for improvement, maybe being younger has something to do with it, too (I'm 62,) but...you if you haven't tried boron, you might consider it? It's easy and inexpensive. Look into Jorge Flechas?

I also worked on "gut issues" figuring if I did take an oral drug, what would be the point if I'm not absorbing it?

Also started getting diligent with my vibration plate. They're spendy but I happened to already have one that I'd used quite a bit when I first got it, then forgot about it. I do think I didn't do long enough sessions back when I first had it, but info about how often, how long, and how to use it is conflicting/confusing. Still, might have helped? (I'm currently doing 3-20 minute sessions per week.) May be especially goid for hips, but my biggest gain was in my spine, which was far worse than my hips, so I'm okay with that.

I did take about 9-10 doses of Fosamax, 3-4 doses in late spring, 4-5 doses in late summer/early fall. I did have issues with it if I sat down at all, even with a back brace on; esophogeal...irritation. But if I stood for a full hour after taking it, I seemed to be okay. That's not all that much fun, standing for an hour immediately upon waking, but it's more fun than maybe an esophageal ulcer. My husband took it for about 4 months, started having more effects the longer he took it, and my endocrinologist said it wasn't worth it, not strong enough for me anyway, so I only took it to appear compliant, (the first time) and later to see if it would help with fracture pain (it did not). So...make of that what you will.

Good luck!

Brittlebone profile image
Brittlebone in reply to josephinius1

Lots of helpful information here. Thank you.

Shortee profile image
Shortee in reply to josephinius1

Thanks for all this information. How much boron did you take? Did you take it as pill supplements?

Also what kind of vibration plate do you use?

josephinius1 profile image
josephinius1 in reply to Shortee

I took anywhere from 12 to 150 mg of boron. Most seem to think 12mg is ample, and you pee out 90% of it, but Jorge Flechas suggests up to 150 mg for significant results, so if I have 30 mg tablets or capsules available, I take more.

I got my vibration plate at a vendor fair being held before a big running event about 8 years ago. They weren't such a "thing" then; all I knew was Costco had them for twice the price occasionally, the saleswoman was good, so I got this one. I know almost nothing about it. I might have had some info, but it's been stashed somewhere. All I know is when I turn it on, a British lady says "MaxBurn". I've looked it up online but I can't find how many hertz each level is supposed to be. I know it has 10 levels, and can either be run in a steady state or varying between levels. I like level 10 so that's what I do; just feels good. I doubt it's too much more than the supposedly ideal 30 hertz. It's very sturdy, not super high off the ground and operates reliably. I know there are recommended models, three times as expensive, and much cheaper ones that might work just fine but who knows. (I paid about $800, on sale, of course.)

Shortee profile image
Shortee in reply to josephinius1

Thanks for all this info!

StrongFuture profile image
StrongFuture in reply to Shortee

I've read that more than 20 mg of Boron is not considered safe.

Mesawalker profile image
Mesawalker

I felt the same way, as I have Crohn's disease. But I have not had any GI issues while taking Fosamax, which surprised me. Just to be on the safe side, I take it on a day that I do not have immediate plans.

Tulips7349 profile image
Tulips7349

I had been on Fosamax for 4.5 years with no side effects. I stopped it because I needed a tooth extraction/implant dental work and to minimize the risk of osteocronsis. Once all the dental work is completed I need to see my endocrine dr to decide next step. I have been off of it since Aug. No side effects after stopping the med. I'm am concerned about my bone density after being off of Fosamax even though it's supposed to stay in your body for a long time.

Aloha55 profile image
Aloha55

Ask your doctor about absolute risk reduction. Fosamax doesn't really prevent hip fractures.

"Women with a mean age of 68 and a T score -2.5 or were prescribed Fosamax for four years had a 56% less likely to have a hip fracture than women not taking Fosamax. It is important to understand that the 56% less fractures is the relative risk reduction (RRR). The control group had a 0.5% chance of having a hip fracture and treatment group a 0.2% chance of having a hip fracture. The absolute risk reduction (ARR) is only 0.3%. Preventing hip fractures in elderly patients is clearly an important public health goal, but based on NNT calculations, 81 women with osteoporosis would need to take Fosamax for 4 years (at a cost of over $300,000) to prevent one hip fracture."

source: jhsfocus.org/2018/08/02/abs...

NursePatty profile image
NursePatty

Scared of Fosamax myself. Is there any positive results out there?

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