ADVICE NEEDED ON STARTING MEDS... CONFUSED...

[newbie76]

I will soon need to start treatments and I have been offered a few options:

KIVEXA (ABACAVIR+3TC) or TRUVADA

+

EFAVIRENZ (SUSTIVA) or KALETRA (LOPINAVIR/RITONAVIR) or FOSAMPRENAVIR (TELZIR)

I am really confused! What should I go for? The thing that scares me the most at the moment is the lipodystrophy... Are any of these meds more likely to cause that?

Your advice is much appreciated!!

[twofires]

look each one of those up at Wikipedia; if they have side effects such as lypod...whatever I hate spelling the word

anyway any side effects will be stated there, and you can probably assume the worst

[risred1]

Aidsmeds.com has description of all the current drugs in use with a listing of side effects for each that can be reached from the home page.

I can't agree with assume the worst.

[newbie76]

Well, yes, thank you for your posts. I know I can find all the info on Aidsmed and Wikipedia.
I was just wondering if anyone could tell me their experience with these meds or if really one is as good (or bad?) as the other.
I know side effects are important but they normally go after the first few weeks while the meds I choose I will have to take for the rest of my life so it makes me think that it is really a very important decision.

[ARMANDO]

newbie
       i would definitely stay away from the sustiva and most people will tell you the same thing!!!,

[newbie76]

Hey... could you tell me why?

[redhotmuslbear]

How about inquiring on the use of Truvada (Viread+Emtriva, a cousin of 3TC) with Viramune, the nicer cousin of Sustiva?  The maker of Viraumne doesn't have the salesforce to push this combo, but I used it successfully, as have several friends.  The rare possible side effect with Viramune, as with Ziagen and Sustiva, is a rash or hypersensitivity reaction that could be life-threatening.

Sustiva gets a bad rep because of the sleep and mood disturbances it can cause;  and if one doesn't get those side effects, a hung-over feeling is not uncommon.  If you have issues with depression, mania, or alertness, be direct with the doc about them so that you are not prescribed Sustiva.

[newbie76]

Thank you redhot! I will ask my doctor what she thinks of Viramune next time I see her.

So you think that the fact that Viramune isn't the preferred NNRTI when starting antiretroviral treatment for the first time (Sustiva is) is to be attributed to economical interests or are there other reasons behind it?

Many thanks.

[JPinLA]

Definitely ask about Viramune/Truvada.  I've been taking >2 months now and have had zero side-effects.  Very easy! 

[newbie76]

OK I will surely ask that. I read though that Viramune isn't the preferred med for 1st time starter because according to some studies is less effective in reducing the virus... does this make sense?
Also, if and when Atripla will be available in the UK will I be able to switch from Viramune/Truvada to Atripla or only from Sustiva/Truvada to Atripla?

[risred1]

I think we have to be a bit careful when we slam medications that aren't doing well for an individual. Yes there are problems with all the meds on the board, but there are lots of people who do fine with few problems.

I asked my doc about Sustiva, and he stated to me that the vast majority of Sustiva users are doing pretty well, that in his experience only about 1 percent of those taking sustiva really can't take the side effects.

Perhaps the 1% number was an ex ageration, but I know people who take meds and don't give it a second thought. They are the lucky ones for sure, and I'm sure it irritates those when they don't have the same experience as those that do well.

Sustiva based treatment in the Atripla form by far is probably the 1st med line doctors are reaching for as it is a single pill once a day. I believe that the number one concern our specialists have is adherence, and that this formulation fits that bill. Additionally, Sustiva is proving in tests to being on par if not superior to Kaletra or PI based treatment. So it works well.

My personal choice when I have to join the ranks of us who need meds, will probably be at this point the Reyataz + Norvir + Truvada combo or Reyataz + Epzicom. But as new meds come in the pipeline, it is good to know there are new options emerging for first line treatment and subsequent lines to follow, and flexibility if there are tolerance issues.

When it came to tolerating treatment, there weren't many options just a few years ago, so that I'm sure that patients were coached to stick it out. Our doctors are much like our selves, habits are hard to break and that even for them, their perceptions can trail the reality of today's treatment world and options. So perhaps we should have a shorter timeline to decide if its working out or if we need to try something else. So it is up to us to lead the way, when it make sense.

Good luck and try not to worry about treatment, there are bumps in the road, but after adjustment, you may do fine!
----
I know it may be out of place for a individual that is not yet on meds to comment. But I'm on the borderline of meds for 2 years now. I've been looking at this pretty hard and having many conversations with my specialist and have done a fair amount of reading. The problem with forums like this are that you often hear the worst stories and not so many of the successful ones. So I spotted two comments in the last couple of days I found really discouraging. Such as assume the worst and Definitely don't do Sustiva. Please take these comments with a grain of salt. And remember that your experience will be your experience, and the odds are good with today's recommended front line treatments, that one will do better on today's meds for longer periods of time with fewer or MANAGEABLE side effects. (Note the word Manageable.) If you are up on the things you can do to working in combination with your med combo, you can hopefully mitigate and manage those pesky issues.)

For example, If you have problems with diarrhea, it surprises me that a common and readily available supplement, glutamine, which is noted for helping keep the digestive track working well, is not well known or utilized that frequently. Be sure to make sure you have a full nutritional picture, which may include supplements to complement the meds you need to take, (always review them with your doc, print out the information before you go in.) A great place to pick up on these supps is the newyorkbuyersclub.org that is a non profit group that works with people with HIV to provide information and supply of supplements that are commonly used to build up our immune system, and mitigate medications issues.

[dfw1973]

Hey!

I found out my status early in the game back about three years ago when I was in the high 660 t-cell range. 
Once I hit the 300 mark I was asked to take part in a clinical trial - by the time it actually started I was down to 99 t's.  I am on Reyataz, Norvir (booster - which is not typical for an initial but it is part of the study)  and Epzicom.

Since I am allergic to Bactrim and below the 250 - I was also put on Dapson.  I have had a  high billirubin count since I was a kid - so yes I did turn bright yellow.  That was a concern with the Reyataz.  I was only sleeping 4-5 hours at a time. 

This weekend I was doing some research, and realized the Dapson can cause yellowing.  The doctor called with my first labs.  I went from 99 t-cells to 289 in two weeks.

 No stomach issues, no bowel issues, I inquired about the Dapson and they told me to discontinue to see if the yellow would go away.  Today - EVERYONE at my job could not believe how much lighter I was, and I slept the entire night like a baby.  So my point being, the actual meds - caused me zero side effects SO FAR, and are working like crazy.  Today marks the three week marker.    Now I am sure that I won't climb as rapidly as I started, but it's a good start.  I know sometimes I can become addicted to reading all the nightmare stories, but there are success stories too. 

Faith, hope and love to you!  Let us know what happens!

[budndallastx]

My original regime was Epzicom (Abacavir / 3TC) and Sustiva but I ended up being sensitive to the Abacavir so was forced to switch to Truvada.  Sustiva / Truvada have not been an issue for me.  I did have a rash shortly after starting the meds but it disappeared within a week.  I took benedryl to help with the itching and the itching was never that bad.  Everyone reacts differently but as was pointed out earlier, don't let someone else's experience color your decision. You have to weigh all the pros/cons of the combo you want and move ahead.  The good news is that if you don't like the side effects (if you have any) you can always switch.    Both combos are potent so I don't think you can go wrong.  If you're thinking about the Epzicom, just be careful the first six weeks to see if you're sensitive to it.

[newbie76]

Thank you for all your advices. It really makes me feel better to see that there are other people in my situation.

I think I will ask my doctor what she thinks of Viramune, but if she doesn't recommend it I will probably go for the Truvada/Sustiva combo hoping to switch to Atripla once it becomes available in the UK.

Unfortunately these weeks I am having symptoms (sun allergy, tongue ulcers, mild diarrhea, ...) which although is nothing major, it always scares me, considering I was diagnosed a week ago today!

I am keeping a diary in which I note all my symptoms; not sure if that's useful but I am doing it for now.

I read somewhere that it is even advisable to take a few weeks off work when starting the meds to manage the side effects... I hope this depends on the person as I couldn't possibly take a month off work!

[risred1]

Getting diagnosed and having to go on meds more or less immediately can be rather jarring to ones psyche.

I know that when I was diagnosed I had a rocky time adjusting to just the HIV.

I can sympathise that your now thrust into a whole new world with perhaps little preparation. So just to let you know that for most of us, it was and continues to be quite an adjustment. Much of what we have to deal with is really where to start and what do I need to learn about.

This resource, Aidmeds.com, thebody.com, poz.com are all tremendous resources, but the downside in the early part of adjusting to ones new status is all the negative stories that we are confronted with about living with HIV and treatment.

It was so difficult for me I had to stop reading the forums and reading each press release on meds, waiting for that breakthrough moment. I spent several conversations talking to my doc about the new anti viral approaches, including some experimental vaccines.

My view today has evolved from essentially a panic stage to one where I try to focus on what I am doing, not what is going on around me. If I were to make a recommendation, learning to live with HIV should be your number 1 priority. And in order to embrace that your POZ and have it be a part of you not as your defining thing.

In order to do this, there is work to be done. There is a book called Healing HIV, which I truly hate the title, but in that book is a excellent guideline for learning to accept and manage HIV. The treatment section is out of date, but everything regarding Nutritional methods and Psychological approaches allow you to start managing HIV and LIVING with HIV.

This is not the be all end all in books for sure. And one can have ones own program it those are the objectives. Developing a plan for dealing HIV can include, Therapy, group or individual, Bonding with other folks that are POZ, Finding a Mentor, Learning about supplements, and lastly and very importantly, learning to deal with ones mortality.

This is an important point, as other people must learn to live with conditions which are life threatening, such as Diabetes, (yes diabetes!), Cancer, Heart Disease and the like, we have to do so as well. We should not think we are so unique having to deal with a condition. Often people with HIV feel so isolated because of the stigma attached to HIV, that we can perhaps put it out of perportion with others with chronic conditions who have to deal with the same things.

So we are not so unique, we are not so alone, we can learn to live with HIV, we can learn to embrace HIV so that it is not the sole defining thing about us, we can manage HIV and we do have treatment. Life and death is what our existence is about. What we do with our time and how we want to live our lives is ultimately what we have to decide. My message to you is, who you are prior to your diagnosis is WHO YOU ARE, not were, + HIV now. 

[newbie76]

What a nice email... but sad too at points.

I agree we need to learn how to live with this condition, but there's hope. Perhaps I am still naive but I wouldn't compare myself to someone living with cancer.  When you have cancer you either die from it or get well and -slowly- forget. In our case we know we are not going to get away from HIV but we can live a long life nonetheless.

People with HIV live long now and the prospect of growing old isn't a uthopy anymore. Yes we will have ailments, but with adherence, the right nutrition and a bit of luck I am convinced we can make it through it.

I hope I am right. I don't want to lose this hope. I have a friend who's been +ve for 14 years and 2 years ago was so well he stopped the meds. He said that in 14 years he's been off work for a total of about 4 weeks. He's my inspiration now and I want to be like him! And I will try!

Good luck to everybody.

[risred1]

If i sounded sad, I would like to assure you, I am a very level and generally happy person. I have accepted my condition, I no longer have thoughts constantly that I'm HIV Positive, especially when I'm in situations where I'm front of people doing my job.

It was a bit of a trip to reach this point where I could participate in this forum and share the things that I learned. When I was in my transitional stage, the forums and the news were actually making me feel worse about being POZ.

But things change, and I have adapted to the reality of my situation, and I'm happy to be looking at my mortality square in the eye. I want to enjoy life and I'm going to try to stay one step ahead of HIV. There is a bit more urgency and focus on what is important to me. HIV has actually gotten me to be more active physically, and more agressive in my pursuits. I also try to take stock of what is good in life and I am trying to help here on these forums.

So here is to the good things in life and I hope others can have that feeling too!

Cheers as well! It sounds like you will do well!