Refusing medication?

[cariad]

While trying to find a hospital that will do my infusion of Reclast (the osteoporosis drug) I happened upon a site with patients detailing how their lives had been destroyed by this drug. I have no familiarity with these sites or how accurate the information is, but it gave me pause. The side effects included horrific bouts of flu like symptoms and debilitating, long-lasting arthritic pain. I think I am going to pay the extra and go with Boniva, as I have taken that in the past and had no issues. I do need to get on something from my last DEXA results.

I have two questions and would love to hear any of your input:

Have any of you taken Reclast? And more generally, how seriously do you take information that you find on the internet, specifically personal experience stories? This site aside, do any of you read personal stories from internet strangers and find that you are reconsidering a certain aspect of your medical care?

Thanks!

[jbeany]

Well, this does tend to be the only site I use for person to person medical info.  But I've been on here long enough to know most of the posters, and to know that we have a good track record at shooting down the fruitcakes with snake oil cures.

I guess, if I was looking for info on another topic, I'd look at the meta data - How long has the site been up?  How long have the posters been part of the site?  Can I find similar information/stories on any other sites?  Are there links to other personal sites, like Bill P's "From the Sharp Side of the Needle" blog?  It's no guarantee, but at least you can get some idea if it's a website with a core group like we have here. 

Hope you can find some good info.

[wj13us]

Cariad:

As you can imagine I have na issue with bone density.  I took Foreto (SP?) injections for two years.  Two years is the most you can take it for bone cancer issues.  But it did help a lot.

But onto the subject.  I often use the internet as a source of information but always take it with a big gain of salt.  The problem is the person who has issues you have no idea of what other factors may have come into play.  I think I read on here somewhere that some people lie about properly taking their meds or maybe abusing their bodies in other ways.  You just don't get the whole story.

The best source is to go and look at the clinical trial studies. These are carefully controlled (and yes there is verification that the drug was taken properly).  The side effects will be well documented.  You may have to go to the library to get certain papers in medical journals but it should be available somewhere.  A condensed version can also be found in the thin paper, long, folded multiple times, small print found with the medication.

BUT and there is a BIG BUT.  Unless transplant related immunosurperssed people will not be tested.  You can usually find the statement that says "This drug was not tested in patients with..."  Here is where you and you doctor need to work together.  I've gathered from you postings your not a big fan of the medical profession. But the way my doctor and I work is, if I have to take a new, unproven medication for transplants we start with lab work often to make sure nothing changes.  Any hint of something going a foul we stop.  If not we taper down the lab work until we're satisfied things are okay then go back to our regular routine.

Bill

[rsudock]

a pharmacist would have access to the clinic trial info...maybe worth a trip to see him/her.

xo,
R

[cariad]

Thanks, everyone, for the great tips. The one I checked was AskAPatient (fairly established), and also ended up on some other site that seems to deal in patient grievances. I think the primary trouble is once someone puts something like that up on the Internet, it naturally attracts other suffering individuals, and it can very quickly seem like the drug is a death sentence. Still, I read the PI sheet at Bill's suggestion, and the words Renal impairment has been observed in patients after a single administration do not sit well with me. I have a dose of Boniva that I've set out on my nightstand, and I think I will just start that up.

But onto the subject.  I often use the internet as a source of information but always take it with a big gain of salt.  The problem is the person who has issues you have no idea of what other factors may have come into play.  I think I read on here somewhere that some people lie about properly taking their meds or maybe abusing their bodies in other ways. 

Hmmm, it sounds like you might be thinking of something I wrote. But a good point nevertheless!

I've gathered from you postings your not a big fan of the medical profession. But the way my doctor and I work is, if I have to take a new, unproven medication for transplants we start with lab work often to make sure nothing changes.  Any hint of something going a foul we stop.  If not we taper down the lab work until we're satisfied things are okay then go back to our regular routine.

The primary trouble I'm having is that my much loved and trusted GP quit to go head up an insurance company. Still sad about that! The new guy is what my former GP would refer to as an 'indentured servant'. He works for a hospital and it's all assembly line. When I told him the situation, well, I'm not sure he really followed what I was saying, and then he told me that Reclast was "outside of my comfort zone". I told him my surgeon had OKed it, and he wrote me the prescription on the spot. I told my surgeon that story and he said he doesn't know anyone in my town, but he could find me a GP in Chicago. Chicago is quite a drive for me, and usually when I need a GP, I am not up for any sort of drive. So, out of sheer laziness, and knowing the sorry pool of MDs in my city, I am trying to do this on my own. I guess I really need to step up the hunt for a GP that I trust and who also seems to have a little confidence that he understands this situation well enough to make recommendations. My surgeon expects a GP to be able to look into these little things, and this one did not seem to know what to do or how to handle a slightly more complex case.

I never would have thought to ask the pharmacist for clinical trial data. I'll have to try that! Thanks again, everyone!

[kellyt]

I haven't taken that, Cariad, but I think I've mentioned on here before that I'm having joint pain with my cholesterol medication (Crestor).  I can barely open twist caps and it's mainly my thumb joints (both of them), but also pain in elbows, hips, and knees.  I don't take the pill on the weekends just to give my body a break.  My doctor recommended I do that.

Now, my sis-in-law takes Boniva and she has no problems with it that I'm aware of.  I think she takes 1/2 of one, though. 

Good luck.  Constant pain is just wrong!!!  I know!!!   

[Chris]

My bone doctor is thinking of putting me on Reclast instead of Actonel once a month now because I forget to take it. I don't have trouble with this med, except when to take i.
 
Are you also taking Calcium wih D and Vit D too?
 
My DXA scans have shown improvement though. I haven't looked up Reclast yet, bt I will. Have you tried WebMD cariad?

[M3Riddler]

While trying to find a hospital that will do my infusion of Reclast (the osteoporosis drug) I happened upon a site with patients detailing how their lives had been destroyed by this drug. I have no familiarity with these sites or how accurate the information is, but it gave me pause. The side effects included horrific bouts of flu like symptoms and debilitating, long-lasting arthritic pain. I think I am going to pay the extra and go with Boniva, as I have taken that in the past and had no issues. I do need to get on something from my last DEXA results.

I have two questions and would love to hear any of your input:

Have any of you taken Reclast? And more generally, how seriously do you take information that you find on the internet, specifically personal experience stories? This site aside, do any of you read personal stories from internet strangers and find that you are reconsidering a certain aspect of your medical care?

Thanks!

Caraid,

It is often said that if you look up symtpoms of an illness, internet or Medical dictionary, it seems as if you have every symptom in the book along with every disease.
Everyone is different and tolerates drugs differently.  It is your right to refuse any drug given to you. If you feel one drug is working better than another, it is your right to ask for it. Now payment for the drug is another story!!!!

///M3R

[monrein]

My bone doc prefers to keep me on weekly Actonel rather than injectables.  Her reasoning is that it is easier on the kidneys.  I gained 6% bone density in the year following trx.   I put the tablet in my weekly med container so that it insists on being taken.  The only downside I find is the requirement to be up without food or drink for an hour after taking it.

[cariad]

Caraid,

It is often said that if you look up symtpoms of an illness, internet or Medical dictionary, it seems as if you have every symptom in the book along with every disease.
Everyone is different and tolerates drugs differently.  It is your right to refuse any drug given to you. If you feel one drug is working better than another, it is your right to ask for it. Now payment for the drug is another story!!!!

///M3R

I not only do this to myself, I do this for other people. I once was convinced my son had tourettes because he was blinking way more than usual. I don't mess about with things like dry eyes, I go straight for the worst possible scenario.

monrein, a bone doctor? That's a good idea. I am going to see if I can get with one of them in town. Are they called osteopaths?

Anyone know any good bone building exercises for the hip? My former GP briefly explained that I had a score of -2.9 in my left hip. I am assuming he meant z-score, and if my statistics knowledge still serves, that means that I am essentially so far below the median bone density that it is a miracle I am still walking. Scary.

Other than that, I am sticking with Boniva for now. It is extremely annoying to have to wait that hour, but it's only once a month, so at least I'm done for a few more weeks. I also take strontium daily, and I've just started taking my calcium/magnesium supplement as Chris reminded me. I have to space them out from the strontium or they compete for absorption. I take 5000 iui of Vitamin D approximately 3 times a week. The calcium supplement also has D in it, so once I finish this bottle of the high dose tablets, I will just stick with the calcium supplement.

Chris, I would be very interested to hear how you get on with the Reclast. My research said that you can reduce side effects by drinking plenty of water before and after the infusion, and also insist that they take a little longer to administer it - the minimum is 15 minutes, so I would probably request at least half an hour.

Kelly, such sad news about the continued problems with arthralgia. I hope you can find a solution soon! That sounds just miserable. I still wake up really stiff in my knees and ankles, but thankfully the constant pain has subsided. Then again, I am now on a really low dose of the evil Prograf, so I think that helps. Good luck to you, too!

Thanks everyone!

[monrein]

http://www.uhn.ca/About_UHN/programs/osteo/tile.asp

Cariad, this is the doctor who sees me and reviews my bone density exams.  Osteopaths are very different in their training.