POZ Community Forums

Main Forums => Living With HIV => Topic started by: skeebo1969 on December 06, 2009, 02:58:56 am

Title: I need some opinions/thoughts/knowledge
Post by: skeebo1969 on December 06, 2009, 02:58:56 am


  I don't know if many of you remember about 2-3 months ago I mentioned my wife was switching regimens.  She was initially started 6 years ago on Zerit, Viramune, and Viread.  After reading a lot of info on Zerit here in the forums we decided it would be best to switch her medicines even though her vl and Cd4's were great.

  When she was on Viramune she took it once a day.  When we switched medicines to Truvada and Viramune the doctor put her on Viramune twice daily.  We use a mail order pharmacy and they immediately called us upon receiving the prescription from our doctor.  They were questioning the twice daily use of Viramune.  We got in contact with our doctor and he confirmed that it was correct.  Prescription filled no questions asked.  A few months go by and my wife goes in for her regular labwork.  There are some levels that are of concern evidentally and still trying to figure out from the wife what they are.  When I get clarification I will post what they are, but from what I gather they have nothing to do with the extra dosage of Viramune...

  That is if it is indeed such. 

   The reason I think it's an extra dosage is from our very own doctors comments.  During her last visit he asked her why she was taking Viramune twice daily.  She told him he prescribed it and he immediately looked in the chart.  Sure enough he found his mistake.  What blew me away is his comment : "Sometimes doctors make mistakes".

  Yes we all make mistakes, but the damn pharmacy was calling him out on it and he still did not catch it.

  My question to everyone here is how bad is this mistake?  I pretty damn pissed about it... 
Title: Re: I need some opinions/thoughts/knowledge
Post by: skeebo1969 on December 06, 2009, 03:01:25 am


   Shiznit!!! Ann, Andy, Annie...lol.    Could one of you move this to LW.  I guess I'm  angrier than I thought and posted this in the wrong forum.
Title: Re: I need some opinions/thoughts/knowledge
Post by: Miss Philicia on December 06, 2009, 03:09:35 am

  My question to everyone here is how bad is this mistake?   

Pretty damn big.  It was big enough just to make the prescription mistake, but to then be informed of the mistake by the pharmacy and not correct it is derelict.
Title: Re: I need some opinions/thoughts/knowledge
Post by: edfu on December 06, 2009, 03:42:17 am
There's no other word for it:  outrageous. 
Title: Re: I need some opinions/thoughts/knowledge
Post by: J.R.E. on December 06, 2009, 06:19:57 am
Tom ,

I am having a little problem understanding.  Was your wife taking both doses of viramune at the same time , before switching to Truvada ?

And after the switch the switch to Truvada, did she take one dose( one pill) of viramune, and then take the other one 12 hours later?

Ray

Title: Re: I need some opinions/thoughts/knowledge
Post by: skeebo1969 on December 06, 2009, 06:29:01 am

  He also took over the care of the Ryan White and ADAP recipients in the county I live in.  If he is giving my wife and I this kind of care...  two relatively healthy people, what kind of care is he giving those who are in more need of a doctor who knows what he is doing.

  When I was on ADAP and going to the local health department for my care I saw a PA and she was damn good.  Evidentally the change happend within the last two years.

  To make matters worse... kind of like pouring salt on the wound I guess, my wife called the office yesterday because of issues getting some medicine through our mail order pharmacy.  They told her they would call it in to the local Wal-Mart and she could pick it up.  She got off at 5pm and strolled up to the pharmacy with the utmost confidence....  due to my usual sarcasm in the forums I don't even have to tell you all what happend....

  So we have to wait til Monday, to call and get this medicine refilled.  

  On top of this, back when I was suffering from the energy issues and it was found I had very low glucose levels...  he wouldn't let me take the swine flu vaccine because I did not get a chest x-ray.  He litterally refused to let me have it while my wife was there to get hers...  I kid you not!  He figured I had low energy due to something in my lungs, but meanwhile said they sounded clear.  He totally ignored a glucose reading of 63 and  a subsequent one of 59, and used this as a reason for keeping me from my fix of swine flu. ;)  The lack of x-ray that is, the only reason I didn't get it was because I had to fork over $239 with health insurance.  We just did not have it!!  

  I guess it's pretty damn clear I need to find a new doctor.  Should I bring this to the attention of anyone?  In Florida you are forced to stay in the county you live in if you receive any sort of services.  He is a lot of folks only option here...

  I'll need to find out what is amiss with my wife's labs.  I know it involved her having to take stool samples.  I know it seems strange that I don't know, but with these holidays we have been so busy with work and have literally passed each other to and from work at the door. (we work opposite shifts).  I'll find out today and update...

  
Title: Re: I need some opinions/thoughts/knowledge
Post by: skeebo1969 on December 06, 2009, 06:34:40 am
Tom ,

I am having a little problem understanding.  Was your wife taking both doses of viramune at the same time , before switching to Truvada ?

And after the switch the switch to Truvada, did she take one dose( one pill) of viramune, and then take the other one 12 hours later?

Ray



Ray, thanks for asking because I was not being clear here.  I have her pill bottle in front of me now.  I am pretty pissed....  She use to take one pill in the morning and one at night.  On this pill bottle it says take 2 tablets twice daily...  So that means instead of two she was taking 4 daily for a little less than two months.

 It's even worse than I originally gathered...
Title: Re: I need some opinions/thoughts/knowledge
Post by: J.R.E. on December 06, 2009, 06:48:32 am
She use to take one pill in the morning and one at night.  On this pill bottle it says take 2 tablets twice daily...  So that means instead of two she was taking 4 daily for a little less than two months.

 It's even worse than I originally gathered...

That's what I was afraid of. someone fucked up on the marking on that bottle !! your wife was double dosing. I just read, what is on my bottle of Viramune.

It simply states "take two tablets every day"


Ray
Title: Re: I need some opinions/thoughts/knowledge
Post by: Miss Philicia on December 06, 2009, 09:46:35 am
That's what I was afraid of. someone fucked up on the marking on that bottle !! your wife was double dosing. I just read, what is on my bottle of Viramune.

It simply states "take two tablets every day"


Ray

No, from what I understand the doctor prescribed it incorrectly, and the pharmacy noticed the error and notified the patient, who in turn notified the doctor.  The doctor then disregarded the discrepancy and told the patient to take it as he had prescribed.

I'm surprised that the pharmacy didn't insist on phoning the doctor on their own.
Title: Re: I need some opinions/thoughts/knowledge
Post by: max123 on December 06, 2009, 01:52:28 pm
hi skeebo.

this is prima facia negligent practice of medicine. i don't blame you for being ticked off. i would recommend filing a complaint with the florida department of professional regulation (dpr). they will investigate and take action...they're pretty tough on offending medical professionals. i think there's a link on myflorida.com

i also agree that it's time for a dr. change. if your in broward, the bcdoh has a great doc: dr. holding is her name. am unsure about dade. hit me a pm if you have specific questions about the team i'm talking about. they really are great.

viramune's target organ appears to be the liver...it's likely that your wife's liver enzymes are elevated. that's also why they are montoring stool samples. the hepato-biliary tract can also be affected. definitely have her go easy on the drink if her liver enzymes are up. you can also speak with her new doc about the potential of using sam-e (adenosyl methionine) as a liver support nutraceutical to aid in lessening the physical burden on the liver while it heals, if that is actually the case here.

hang in there, man & good luck.

max
Title: Re: I need some opinions/thoughts/knowledge
Post by: GNYC09 on December 06, 2009, 02:03:22 pm
That really sucks!  Sorry this happened.  
I don't know if it's worth "officially" reporting the doc (esp. since most medical associations are run by dr's peers that oftentimes are lenient) but there are a lot on online sites where you can see if others have experienced the same thing with this doctor (ratemds.com, drscore.com).
Good luck.
Title: Re: I need some opinions/thoughts/knowledge
Post by: Inchlingblue on December 06, 2009, 03:13:01 pm
First of all, how many mg. are we talking about here per tablet? I assume when she was taking it once a day before, that she was taking 2 pills @ 200 mg. each once day (for a total of 400 mg.), right?

Have you read the Viramune doage info on aidsmeds? The fact that she was already taking it once a day I suppose would be the rationale for continuing that dosage but the fact is that Viramune is recommended to be taken twice a day and, while it might be possible to take Viramune once a day, it clearly says,  "it has not yet [been] recommended by any experts and has not yet been evaluated by the U.S. Food and Drug Administration."

It does not seem like this was such a huge mistake based on this information, quoted below. She was taking it once a day before and it worked for her but it is not recommended.

I assume we're talking about 200 mg. tablets? The daily total should be 400 mg. either way, so the once a day dose is 2 x 200 mg. tablets once a day. The twice a day dose is the same, 2 x 200 mg. but divided into twice a day instead of taking them both at the same time. Same daily total of 400 mg.

The bottom line is that twice a day is what's officially recommended so it can't be that big of a deal as far as any excess toxicity.

Having said that, if there's one thing I've learned since being diagnosed a little over one year ago, is that I must take it upon myself to be as informed if not more so than my doctor. Luckily, I kind of enjoy reading about all of this (shoulda been a doctor, lol) so I'm Ok with that.  I would never take anything prescribed to me unless I've researched it first myself.

Taking Viramune is a two-step process. For the first two weeks (14 days) of treatment, the dose is one 200mg tablet once a day. Two weeks after starting treatment, the dose of Viramune is increased to one 200mg tablet twice a day. Following this schedule—which you should do under your doctor's guidance—can reduce the chance of developing a rash or other side effects.
 
It might be possible to take Viramune only once a day. This would involve taking one 200mg tablet, once a day, for two weeks, followed by two 200mg tablets, also once a day, thereafter. Researchers are now testing the safety and effectiveness of this option— it has not yet recommended by any experts and has not yet been evaluated by the U.S. Food and Drug Administration

LINK:

http://www.aidsmeds.com/archive/Viramune_1616.shtml

I guess the question for him should be, "Even though Viramune is prescribed twice a day, it has been shown to possibly work one time a day and the fact is that she has been taking it one time a day already so is it OK for her to continue that way?"

The other thing to look into is whether the combination with Truvada causes lower levels of Viramune in the blood that would warrant sticking to the prescribed twice a day dosage.  Which I doubt, because it's the same total of 400 mg. either way but you never know.

Title: Re: I need some opinions/thoughts/knowledge
Post by: J.R.E. on December 06, 2009, 07:42:22 pm


Sometiime  in 2004, or maybe 2005, my doctor suggested that I take both doses of viramune at the same time.  In other  words, 400mgs once a day.  However I found that too intense for me, and went back to two, separate doses ( 12 hours apart).


Keep us updated Tom...

Ray
Title: Re: I need some opinions/thoughts/knowledge
Post by: max123 on December 06, 2009, 07:54:03 pm
inch,

i think that the issue is that at 200 mg/tab, skeebo's wife was mistakenly prescribed 800 mg/day (2 -2 tab doses) instead of 400 mg/day (2 -1 tab doses)...hence double the advised mg amount.

She use to take one pill in the morning and one at night.  On this pill bottle it says take 2 tablets twice daily...  So that means instead of two she was taking 4 daily for a little less than two months.
Title: Re: I need some opinions/thoughts/knowledge
Post by: J.R.E. on December 06, 2009, 08:00:10 pm

I am also wondering, if somehow the doctor had thought that she had been taking both doses( 2 pills) together.


Ray
Title: Re: I need some opinions/thoughts/knowledge
Post by: skeebo1969 on December 06, 2009, 10:34:16 pm


   Thanks everyone for the responses.  Just to clarify it is indeed 2 pills taken twice daily for a total of four pills.  Right now the thing that stands out on her most recent labs is something called eosinophils.  They are high and her red blood cell count is low.  She does suffer from allergies so this could be the cause of the elevated eosinophils....  anyways this is what the doctor is currently concerned about. 

   My wife and I have decided to start seriously searching for another doctor....  kind of sucks because where ever he or she is it will be a long drive for us.  Just wish there was a better doctor in this city.

   
Title: Re: I need some opinions/thoughts/knowledge
Post by: sanitex on December 06, 2009, 11:31:13 pm





   some of the doctors are comfuse sometime in times of prescriptions even my wife first
ID doc did the same to her ,he suppose to put her on Kaletra ,lamuvidine,tenofovir,he only
pescribed (kaletra,lamuvidine) for almost 6months before i found out from this forum
and i change her to mine own ID doc and he complete the doseage for her.
Title: Re: I need some opinions/thoughts/knowledge
Post by: leatherman on December 06, 2009, 11:31:42 pm
Just to clarify it is indeed 2 pills taken twice daily for a total of four pills.
did you ever find out the actual mg dosage? It sounds like she could be taking double up to quadruple :o the recommended dosage
Title: Re: I need some opinions/thoughts/knowledge
Post by: Inchlingblue on December 06, 2009, 11:36:04 pm

   Thanks everyone for the responses.  Just to clarify it is indeed 2 pills taken twice daily for a total of four pills.  Right now the thing that stands out on her most recent labs is something called eosinophils.  They are high and her red blood cell count is low.  She does suffer from allergies so this could be the cause of the elevated eosinophils....  anyways this is what the doctor is currently concerned about. 

   My wife and I have decided to start seriously searching for another doctor....  kind of sucks because where ever he or she is it will be a long drive for us.  Just wish there was a better doctor in this city.
 

Yikes...so the prescription instructions say to take 2 pills, two times a day, like, written down on the bottle?

Check on www.aahivm.org for another doctor if you want to switch, there have got to be other choices not that far away, it's not like you're in the boonies (or is it?)

Doctors are human and do make mistakes, if this were his only one, as unacceptable as it is, I'd be inclined to let it go but it seems you are not happy with him overall and this is not the only time there's been a problem.

This incident reinforces how important it is to double check doctor's orders.
Title: Re: I need some opinions/thoughts/knowledge
Post by: skeebo1969 on December 06, 2009, 11:46:36 pm
did you ever find out the actual mg dosage? It sounds like she could be taking double up to quadruple :o the recommended dosage

200 mg tablets.  So that would be a total of 800 mg.

Yikes...so the prescription instructions say to take 2 pills, two times a day, like, written down on the bottle?

Exactly

This incident reinforces how important it is to double check doctor's orders.

Yes it sure does.   Trust I do feel some of this responsibility was of course our own, especially with a tool like Aidsmeds at our disposal.
Title: Re: I need some opinions/thoughts/knowledge
Post by: minismom on December 07, 2009, 05:51:56 am
Change doctors.  I understand where you're coming from about long drives.  When we switched Mim's PID (after 8 1/2yrs), we went from a 3hr round trip drive to a 6 1/2 hour round trip drive into another state that doesn't take our insurance.  I have NEVER been happier. 

I'm glad your wife got off Zerit.  Dealing with the after-effects of Mim taking it for 8 1/2yrs, I can honestly say that I've never known a worse drug.  Mim's ex-PID screwed up her Viramune dosage, also.  Resulted in Mim having a bad hepatic reaction / rash.  Problem was that her ex-PID (the only one in our state) left for vacation and no other doc knew what the drug was for let alone how it was supposed to be prescribed.

Good luck finding a new doctor.  I know how stressful it can be.  Other than the Viramune screw-up, how is your wife doing on her new meds?

Mum
Title: Re: I need some opinions/thoughts/knowledge
Post by: skeebo1969 on December 07, 2009, 11:27:07 am


   Mom,

      Zerit did a number on my wife also.  Her numbers are great on the new regimen, Cd4 949 and Vl undetectable.  It seems her cholesterol is way outta wack too.  Hopefully we will have some answers as to what the issue is soon.  The next closest doctor that is in our providers network is almost 2 hours away..... I just hope I can find something better than what I've found here in the city I live in.