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HIV Health and Treatment Issues >> Treatment & Side Effects

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Reged: 06/21/07
Posts: 2
To start or not to start.........
      #228066 - 06/21/07 02:36 AM

Hello all ~

Brand new member here. My father was diagnosed just over a year ago, and has not yet started meds. Within that time he moved to another city, and found a new doc. The first doc told him to wait as long as possible before starting meds, because of the side effects. The new doc has wanted him on meds since she first saw him 6 months ago. We got the newest numbers today, and they aren't good ~ cell count 315, viral load 94,000. His numbers have pretty steadily declined since diagnosis......and of course he knows people who've had the virus for many years and are doing fine without meds. He's confused, and since he feels fine, he wants a new doc, but doesn't know how to go about finding one.

I guess what I'm looking for here is: what would you/have you do/done in a similar situation? Should he start on meds soon, or wait until his next appointment in 3 months to see how the numbers look? (As I mentioned, they have steadily gone downhill ~ at the 6 month post-diagnosis checkup, the doc told him it was probably just a common spike) And I don't know.....can they go back up and the viral load get lower without meds? Is September too long to wait, given how the last 14 months have gone? How can I find a doc that he/we can feel confident in? And how common are the side effects, and what are the worst of them?

Thanks in advance ~ any and all advice greatly appreciated.


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Reged: 01/20/07
Posts: 1186
Re: To start or not to start......... new
      #228072 - 06/21/07 10:06 AM

Welcome to the wonderful world of HIV where there is never a clear cut answer.

According to your dad's CD4 count he falls into the 'medication is recommended' category. Here's a link explaining more about the criteria and studies used for determining when to start, disease progression from different starting points, etc. This is from 2002, but I don't think the CDC has changed their recommendations to date.

The CDC however is not the only thing that needs to be taken into account. How does your dad feel about starting medication. Unless a patient buys into the whole idea of taking medication, then compliance will be a issue.

I understand completely the "I feel fine, why do I need to take meds". Tell him the reason would be to keep feeling fine. The idea is to preserve our immune systems as much as possible, for as long as possible. It's easier to maintain what he has now, then it is to have to build it back up.

The nice thing is that unless a person is very advanced there is time to consider your options. See what the next labs bring, but do keep in mind that a steady decline isn't likely to reverse without the help of medication.

Good luck.

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Reged: 02/19/07
Posts: 541
Re: To start or not to start......... new
      #228075 - 06/21/07 02:30 PM

Welcome to the forum, I tested positive last year with a CD4 of 274, I started on meds quickly. My CD4's were last I checked 464, so that is a good increase. It is not a good idea to go side effect shopping. Some people do not even have side effects, and there are ways to counteract some of the side effects. For example, my cholesterol had continued to rise, so my doctor put me on a vitamin supplement of fish oil. I totally understand that he is hesitant to take the drugs, but we have come a long way in the past 10 years in creating and improving HIV medications. I know it is hard to listen to doctors sometimes, but you have trust that they are looking out for the best interest of your father. Good luck to you. D

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Reged: 11/02/06
Posts: 131
Loc: Melbourne, Australia
Re: To start or not to start......... new
      #233810 - 11/21/07 02:12 PM

Hi Lisa.

I've been pos for 8 years and have only started medication 14 days ago. I'm in a different situation to your Dad, my blood levels were in the acceptable range right up until I began treatment but in the last year I was starting to feel terrible, run down and coming-out in all sorts of skin breakouts and constant colds and so on. I had next to no energy and at 44 was feeling like an old man of 80.
I had to ask and ask and ask to be put on something purely because my blood levels didn't fall below the magic numbers and they were happy to just keep monitoring me. Your Dad feels fine but his levels are lower than that at which they recommend to start treatment. Just goes to show how differently this affects us all I suppose.
At the end of the day, my personal opinion as to whether to begin treatment or not falls mainly in the area of how healthy your Dad feels right now, is he feeling fine and full of energy, at least as full as ever he was? Is he noticing any unusual or persistent little health concerns which he never had before which might be due to his suppressed immune system?
If the answer to those is "no, he's just as normal in every way as ever", it doesn't mean that he shouldn't go on meds, but it does mean that there's no rush to do so. From my own experience (it happened to me for 8 years) it is normal to be told "see you in 3 months for another test" with no urgency to it. HIV specialists/doctors like to look at a viral load and t-cell count over time, and see it in graph form. They want to see the trend, whether it's slowly going up or down or staying static. If they see a gradual and constant decline in t-cell levels then they would be more likely to advise to begin medication, but if for instance it was staying at relatively the same level and the body was coping on it's own, they might just say "let's see what happens in 3 months". It's common for blood levels to spike or fall for one reading and then return back to the normal level again later, so they prefer to see a couple of readings in a row which confirm a trend one way or the other just to avoid jumping to conclusions. I had one spike where my viral load jumped to over 100,000 where it was always only in the tens of thousands, it was only one reading and three months later at the next test it was back down again. Likewise, my t-cell count jumped up and down a bit too, it fell to 350 a couple of times but mostly was in the mid 400's.

Bear in mind that his viral load isn't excessively high, at least I don't think so, mine was up at that level many times and my doctors saw no issue in it.

As someone else has said, taking medication is a big commitment and if he's thinking of doing it he has to know that it's a permanent step and has to be adhered to day in, day out. Missing doses here and there will enable the virus to work around the drugs and develop resistance to them and if that happens he might lose a whole family of particular drugs because they will all be useless on the virus he has after that, because that family of them all work in the same way. That's no good down the track when it can mean he runs out of options.

I have started my meds and haven't had any side effects as yet, except a slight burning sensation in the lining of my mouth which is going away now. I was terrified of side effects, I had heard so much about them and it was one of the things I thought most about when considering starting treatment. But nothing to worry about to date.

If your Dad feels fine right now and is doing OK, he shouldn't panic and I would think from what I know, that it's perfectly reasonable for a doctor to want to wait a few more months and see what the trends are in his blood counts before making a decision on when to start treatment.

But if he wants to go ahead and start purely to preserve his current immune system and is happy to commit to the medication every day and knows what he's getting into in that respect, then due to his t-cell levels, no doctor should be telling him not to begin because he falls into the standard guidelines as to when you should begin treatment.

All the best to him and you. He's lucky to have you looking out for him, that's all I can say.


*edit* I just want to add one more thing, finding a doctor who you like and trust and get along with is crucial, much more important for those with HIV than people who just see their GP once a year or whatever. As someone with HIV, you are in constant contact with your specialist, 3 months sounds like a long time between visits, but take it from me, over time those 3 months rush by and it seems like you are there seeing your doc all the time. You become more or less a team working together for your own health management plan, and that means that you should hopefully 'click' on a personal level more than you would in other circumstances. You're working closely together and you need to like each other if possible. It's a very personal relationship.

I changed doctors a couple of times before settling on one I really valued, they all work in the same clinic and I felt no qualms about admitting that the enthusiasm level or bedside manner of one didn't suit me and deciding to shift to another. Your Dad needs to feel confident that his doctor is both competent, is listening to him and cares about his welfare and as his condition will be dealt with for the rest of his life, he needs to be happy as possible with his choice of specialist on a personal level. He's allowed to be picky and in my opinion should be. Also one thing I think is important is that his doctor is up to date on all the latest trends and research, for instance my doctor attends regular seminars overseas and is very aware of any new developments. HIV treatment and research is evolving all the time as they learn more, so you don't want a doctor who is not up on what's going on. When your Dad visits his doctor, he can always suss-out their interest in any new developments and see how involved they really are in what's going on. That way he can be confident that if some important new approach to HIV treatment is discovered or adopted he will be made aware of it.

I'm like fake fruit...... I don't bruise that easy.

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