Question of the Week on Side Effects

Hi Priya, thans for posting!!  I've never heard of nimuselide, but it sounds similar to our pain meds that can cause liver damage.  Actually the biggest problem we have is the acetaminophen (tylenol) in these drugs that causes the liver problems.  There is a limit to the amount of tylenol you can take in a day and since most pain meds have it in it, some don't realize that if you mix it with an over-the-counter cold remedies or some NSAIDS you'll be getting to much acetaminophen.

You are correct about my experience with Actonel, but it wasn't actually symptom free.  For the most part I didn't have any trouble with it, but I did develop an unusual pain around the 16 month of taking it.  The pain was like a severe cramp, but went away in a few minutes.  Since it didn't last long I didn't think much of it, and I was never entirely sure it was from the Actonel since I've had cramps like this off and on my whole life.

I guess you never found a solution to your side effects from Actonel, since you stopped taking it, but I wonder if any one else has had a similar situation but found a solution to it?

Some people will experience these side effects and some won't, the problem is trying to find out which one you are early on, since some of these problems have a delayed reaction.

Thanks for you input...

Thanks Phyllis for sharing your story with Actonel.  Like so many, you had symptoms that couldn't be tolerated, so you did what only you could do and that is to re-think your treatment options and come up with a different plan.

Like you said, we all react completely differently to these meds, and we just have to find this out by trial and error.

I'm so glad you found something that is working and isn't causing you any side effects except for greatly improved t-scores.

All things, food, water, sun, supplements and meds that are ingested, or appied to the skin or eyes will have an effect for most, so make sure you evaluate your choices early on in the hope that you'll find something else that will work.

We have to remember not to let the negative stories we hear dissuade us from trying something, since you could easily be one who doesn't have any trouble.  Fear of side effects is not a good way to analyze how treatments will work, since it doesn't apply to all, and you can't possibly know the outcome if you've never tried it.  You shouldn't have to take a med more than once or twice to find out if you can't take it, so it's not like you are embarking on a life long treatment with something you can't take or stop.

Also, you'll rarely hear the positive stories on these meds on the Internet since those doing well, don't feel the need to post and are busy getting on with their lives, so they don't think about it as much.  You only have to look at the total numbers of repeat re-fills on these meds world wide, to know that there is a large *silent* group who are doing very well with them, but not discussing it.  However, this doesn't mean that these drugs are side effect free because they are not, but a lot of the problems with them can be associated to existing medical problems that these drugs can make worse.  So please have your Dr. check for all the other disorders, like gi problems, GERD, celiac, etc., etc. to make sure that your medical history is fully understood and how it could exacerbate the symptoms of some meds.

I must beg to differ here, Pam.  One does not necessarily have to take a med only once or twice in order to find out if you're going to get side effects.  With some, side effects will only appear after a period of months - even years.  Just as you've all mentioned, our bodies react differently and over different time periods, too.

Best Regards,

Revital

Hi Revital, thanks for you input!!  I totally agree with you; many side effects don't raise their ugly heads until months or years after starting a medication, which is horrible. 

Most osteoporosis meds, not all, seem to cause problems for most very early on, if you look at the number of complaints we get about these types of drugs.  Luckily, the new recommendations on these meds is to take them for 5 years, and then re-evaluate to see if you've improved, by how much, and if not why; maybe we need to switch to another medication or take a break, if we are seeing gains in bone density and our risk of fracture is low.  Your Dr. would have to determine these variables to see what is best for you in treating your bone loss.

But you're correct, not all of us react immediately to these meds, but very many do.

Thanks again for your great insight!!

Hello, Pam

Thanks for your comment.

Unfortunately, certain of the bisphosphonate meds can remain in one's system even for a period of as long as 10 years (specifically Fosamax), even after coming off them.  But I'm sure you are aware of this fact.  I was prescribed Fosamax a few years back, but decided it was not for me.

Thanks for the valuable info and I wish you the best of luck with your treatments.

Revital