Osteoporosis

[tummyache]

Unfortunately, I have significant osteoporosis. After 12 yrs on Actonel, we tried the Reclast once-a-year infusion last year, giving me painful side effects... so doctor here in Panama suggested PROLIA, which is a newer drug, injected 2 times a year. Thank heaven I didn't let him just give it to me then and there without doing internet research first! BEWARE!!!!! It contains 4.7% SORBITOL in the 1mL solution! [Looks like I will have to go back to the Reclast, as it is not suppose to be so bad the 2nd time around --it has mannitol as the sugar, which at least is safer for HFI.] Hopefully, most all of you are young and don't have to worry about this "old folks" stuff yet...but here's a good example of why it's a good idea to double check meds for yourself and not rely on doctors.

[Tammy]

Regina takes the Prolia - a shot twice a year. She has no side effects from it. I don't know if it's different here in the states or not, but she's been on it about 3 years now. She can't do the Actonel or Reclast due to blood clotting issues.

[tummyache]

Thanks Tammy for writing. So, Regina doesn't have a problem with the sorbitol? Wow! I wonder if I could take it then.. except the insert said no/ or questionable if HFI or latex sensitive [which I also am under some situations, as I used to be a Dental Hygienist and got over exposed during those years]. Hummm...interesting. Anyone else on the board able to tolerate Prolia?

[Tammy]

hmmm. Interesting that the label said that. I didn't even check the label this time as she's taken it so many times that I didn't really think about it. I usually only check what goes in her mouth. She just had hers in November so I'll have to wait until May to get one again. I'll be sure to see what that one says. Although I'll probably still give it to her since she does ok with it and her bones are very very bad. She also gets the flu shot every year and I've never checked those either. Right or wrong - I guess I've always just figured that a shot doesn't get processed through her body the same way as ingesting it does.

[Tammy]

Ok, found it. although I couldn't find anywhere that it said about HFI or Latex, there is Sorbitol in it:

What are the ingredients in Prolia?
Active ingredient: denosumab
Inactive ingredients: sorbitol, acetate, polysorbate 20 (prefilled syringe only),
Water for Injection (USP), and sodium hydroxide

The pamphlet can be found here:
pi.amgen.com/united_states/prolia/prolia_mg.pdf

But again, since Regina has taken it so many times already with no reactions to it I'll still give it to her as it's our last option.

[tummyache]

Tammy so glad it is working for Regina. Thank heavens she can tolerate it. As her Mom, I think you are doing the right thing! My doctor in Austin, TX when I mentioned Prolia to see if my insurance would cover it there, was reluctant to consider it and didn't know much about it... but then you know how backward TX is. The doctors here in Panama at John Hopkins international hospital/clinic seem so much sharper with USA/European/So. American/Asian medicine. But we have no insurance the part of the year we are here and have to pay out of pocket--of course, everything is so much less expensive than in the USA--like copay for Medicare or less usually.


Here's the sites I found the info on for specifics:

www.drugs.com/pro/prolia.html
DENOSUMAB 60 mg in 1 mL;
SODIUM ACETATE 1 mg in 1 mL
POLYSORBATE 20 0.1 mg in 1 mL
SORBITOL* 47 mg in 1 mL
Water



www.medicines.org.uk/guides/Prolia/Osteoporosis%20%28after%20menopause%29:

"Your prescriber may only prescribe this medicine with special care or may not prescribe it at all if you [there's a whole list, including}:

* are allergic or sensitive to or have had a bad reaction to latex in the past
* have fructose intolerance "

[Tammy]

I think they are talking about DFI when they say fructose intolerance because I've seen a couple of places where it says things like:

Don't take if you Have been told you have trouble absorbing minerals in your stomach or
intestines (malabsorption syndrome)

they always say about the intestines, not the liver which is why I think that. Of course the ultimate decision is between you and your doctor.