POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: zach on August 11, 2011, 11:02:58 pm
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when i was dx'd last year, i had already developed pcp. when i got out of the hospital i was put on prophylactic antibiotics and told to continue taking them until told otherwise, namely once my cd4 count was to an acceptable level. bactrim once a day, azithromax once a week. and atripla once a day, which i will continue to take religiously.
however, a couple of ago months ago, without medical consultation, i stopped taking zithrow and bactrim. there are multiple reasons, but mostly it had to do with my stomachs reaction to them. the linked article has really been more about rationalizing it to myself. i went looking for a point of view that supported my choice.
last month i met with my doc, did the labs thing, reflected on the past year... but what i didn't do, was tell him i had stopped taking the antibiotics.
this is more a confession than anything, i'm not really looking for answers, but if anyone has comments i'm openminded
http://www.nejm.org/doi/full/10.1056/NEJM199312233292604
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I wouldn't call it lying. It was omitted from the discussion and you didn't mention being asked if you were still taking them. Looking at the steady rise in your CD4 counts, I would be inclined (were I you) to bring it up at the next quarterly visit and definitely give him a copy of the article.
A good discussion may occur. I sense you're fearful or concerned about your doc's reaction. I would not assume your doc has seen the NEJM article. Most important, though, is that he does need to know that you're not taking the antibiotics as prescribed, that you are taking the ARVs and when (roughly) you stopped. That way your medical record can be accurate and it gives him an opportunity to understand why you made the decision.
Imagine you were the doc---you would want to know, wouldn't you? It may add a new dimension to your relationship. He should respect your decision and honesty.
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you could have told you doctor that you were having problems with these meds and let him prescribe an alternative medication. ;)
It's not a wrong or a lie - or a failure - on your part to admit to having side effects and ask for a different medication. However, it doesn't help your doctor to properly treat you to take matters into your own hands and self-dose (or in this case no-dose) yourself and then to lie (or lie by omission) about remaining on the prescribed treatment.
While antibiotics may be more forgiving about self-dosing changes, many other kinds of medications like anti-psychotics and antiretrovirals can not be done this way. With antiretrovirals, you run a severe risk of virological failure and/or resistance issues.
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When a doctor treats someone for a serious health challenge and the treatment involved many visits and the patient accepts the prescribed medicine but doesn't take it and doesn't tell the doctor, it is dishonest communication and not fair to the doctor. Also a clear lack of trust in the doctor and/or medicine.
The doctor is doing his/her job, applying knowledge from the profession to an individual.
Just tell your doctor what you can get with, and can't, and go forward with full communication. The doctor might find an work around to accommodate the patient's choices.
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and atripla once a day, which i will continue to take religiously.
The OP stated he is taking his ARVs. It's the antibiotics he's opting not to take.
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thank you all for the input, it is appreciated and i will give it thought. i realize i was optimistic, i hoped and thought i'd be done with all the "just in case" meds at the year mark.
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i realize i was optimistic, i hoped and thought i'd be done with all the "just in case" meds at the year mark.
I was on Bactrim for a full decade. It took me that long to consistently get over 200 cd4s. God knows after being hospitalized with PCP one yr and then with pneumonia 2 yrs later, even when I wasn't adherent to my meds or had serious times dealing with side effects, I kept taking the Bactrim cause I sure didn't want to end up in the hospital with PCP ever again. Pneumonia is probably the #1 issue that pushes sick people to their deaths (especially those already in the hospital), so it's definitely not something to take for granted.
I think others (like MissP maybe) were also on prophylaxis for quite a long time (as in yrs and yrs); and some people (like HellRaiser I think) are still on PCP prophylaxis after several years.
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I think others (like MissP maybe) were also on prophylaxis for quite a long time (as in yrs and yrs)
No, I think I was only on it for 18 months. I developed an allergic reaction to Bactrim, but my numbers were close enough to where they needed to be by that time. Keep in mind that unlike the OP I was not diagnosed with 8 tcells, but more like 160. If you're diagnosed in the single or double digits it's not realistic to set an artificial time limit of a year on Bactrim in your head, that's the big problem I see here.
If the OP keeps his 220 result there or above for the next two readings he's not really in danger, though I personally would have stayed on it for a bit longer.
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No, I think I was only on it for 18 months. I developed an allergic reaction to Bactrim,
ah, ok. I know it took you some time to get to UD and such, so I thought I remembered you on bactrim for a while. (I'll blame my faulty memory on all the excitement of packing for the AM gathering ;D )
Regardless, it's not unheard of for it to take longer than a year to obtain substanial recovery. Studies have shown too that a very low nadir of tcells (ie <25) usually requires a much longer recovery period plus a more limited recovery. (which means the OP should never expect to see 500-700 tcells. Although possible, studies show that kind of recovery is unlikely. Recovery somewhere in the range of 250-450 is much more likely.)
Just like it doesn't always take 10yrs from infection to AIDS, all these time limits are generalized and arbitrary because HIV is a much more individualized disease than people give it credit for.
If the OP keeps his 220 result there or above for the next two readings he's not really in danger
yeppers. It's all about the trends - and one test doesn't constitute a trend. ;)