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Merry-go-round
Oct 23, 2008

Hello from the outback mate!! I can't thank you enough for answering my questions. Especially since I'm hours by plane from any capital city. It's been 4 weeks since I started Eferveranz and Truvada. And yes I have felt like I have been thrown from a Merry-go-round sometimes. At times it has been very disturbing, it's the fatigue contrasted with the speed buzzing I have found most difficult. (I have managed to do a lot of manic cleaning chores around the house that have been left for months when buzzing....suppose there is some good in everything)!! I did put up my hand for help and doctors from the big smoke have thought to stop treatment.

As this was my first treatment regime I felt very depressed, like I had failed or something.

I have just done a gene test at the local hospital (which I think should have been done before starting). I said I would continue with the Efeverenz + Truvada till those results are in (I don't even know what the test means). However due to the continued Efeverance "buzzing", a doctor felt it may not go away and the general consensus from the big smoke is to switch to Nevirapine + Truvada.

What side effects am I facing with that combo? Realistically, not the sugar coated ones, what can really happen? A friend feels I should persevere with Efeveranz, fearing Lipo and the shits and other side effects with Nivirapine.

I could easily get lost in the drug merry-go-round. Nothing was explained to me clearly when I started and I don't understand the implications of changing. I read other people's stories on Atripla and it is working...why? What are we expected to live with? Have I unrealistic expectations of a normal life now?

I don't understand the theory behind the drugs, and changing regimes at all...not sure if I want to. It's just so disappointing after 15 years without treatment to now feel drug fucked, and that things aren't working out.

Should I persevere with Efeveranz + Truvada? Switch to nevirapine + Truvada - or have you a better suggestion??

I appreciate your thoughts. I also feel very disappointed that I'm not allowed into the US for holidays....that does my head in, but that's another story. I don't know what I have to live with and if changing will change anything, just different side effects.

And to answer an question of yours, I'd prefer not to move to the city as I have a fascinating job working in Indigenous media. But if I need to move I would.

I'm confussed and could use your wise advice .

Regards, and cheers from crock country.

Response from Dr. Frascino

Hi Outback Guy,

The genotype test is a resistance test. It lets us know if your strain of virus is resistant to any specific HIV medications. That helps us select the HIV treatment regimen that has the best chance of being effective.

Nevirapine is in the same class of antiretrovirals as efavirenz. It's a non-nucleoside reverse transcriptase inhibitor. It does not have the same spectrum of side effects as efavirenz. For instance, it does not have the central nervous system effects ("buzzing," vivid dreams, etc.). Nevirapine's most common side effects include rash. It's most severe side effects include Stevens-Johnson syndrome and drug-induced hepatitis. Other common side effects include headache, nausea, and vomiting. Lipodystrophy is generally not a problem with nevirapine. (It occurs more commonly with D4T and AZT.) Diarrhea can occur with almost any medication, but is more of a problem with protease inhibitors. You can read much more about the various antiretrovirals and their potential side effects/toxicities in the archives and in the chapter "HIV Medications," which can be easily accessed under the heading Quick Links on The Body's homepage. Check it out!

Your various questions really deserve in-depth answers and an individualized discussion that are beyond the scope of this forum. Your personal HIV specialist should be your best source of this type of information. I realize HIV specialists are somewhat scarce in "crock country." But maybe you should at least make periodic visits back to civilization every three to four months for a checkup and routine monitoring of your laboratory tests.

As far as basic HIV knowledge is concerned, this site has a wealth of information for you to peruse. Have a look around!

The basic theory behind the drugs is that they decrease HIV replication (viral load), which in turn allows for some degree of immune restoration (increasing CD4 count). The basic pathogenetic mechanisms of HIV is that the virus infects certain cells (CD4s) that are critical to our immune system. As these cells are destroyed, we become progressively more immunodeficient. Without our immune defenses, we become susceptible to a wide variety of opportunistic illnesses (infections, malignancies).

Antiretrovirals can be effective in significantly turning off HIV viral replication. However, these potent drugs can have short- and long-term side effects as well as toxicities. Consequently, we need to balance their benefits against their risks. Current guidelines suggest beginning antiretrovirals when the CD4 count drops into the 350 range. The goal of therapy is to drive the HIV plasma viral load to undetectable levels. As for side effects, they can be quite different from person to person. All treatment regimen decisions must include quality of life in the equation.

Don't feel disappointed about needing to start mediations after 15 years! Most folks with HIV had to begin treatment much sooner than their 15th year of being "virally enhanced". Once you are on an effective regimen that your body gets used to, life while on antiretrovirals can be quite livable, particularly with the newer medications. Years ago, antiretroviral therapy was more toxic and much more difficult to take.

As for your next best regimen assuming the efavirenz is not well tolerated, that would depend somewhat on your resistance test (genotype). Assuming you had no significant resistance mutations and wanted to continue to avoid protease inhibitors for now, you could consider the new non-nucleoside reverse transcriptase inhibitor Intelence plus Truvada. Again, a face-to-face visit with an HIV specialist would help tremendously in discussing these treatment decisions and selecting the best option for your specific needs.

Good luck.

Dr. Bob

knocked out Oct 7, 2008

Hi - I have just started efavirenz and truvada and feel completely knocked out. With a collision of events I had a chest infection, given the wrong antibiotics then given azithromycin which I had a bad reaction to (swollen tongue and sores). I was then given fluconazole. This all happened while waiting several weeks for the HIV meds to arrive. A kind of unfortunate clash of events. I live in a very remote part of Australia and there has been some mailing hurdles getting the HIV meds (issues that are now resolved), but in that 4 weeks the chest infection developed. There is also no doctors here with HIV experience which is a concern (despite the expert HIV care from the big smoke). On the ground here with the chest infection, has shown me that I'm a bit on my own here. I'm not sure if its the bronchial infection and the antibiotics or whatever, but the HIV meds have really knocked me about. Dizzy, memory loss, spaced out, ringing ears, tired as. I can't imagine living with these sort of side effects or being able to work at all. I'm taking them late at night and having disturbed sleep and then waking like I'm on planet Mars and just thrown off a high speed Merry-go round!! I'm startled when I read that the side effects can diminish after a couple of weeks when I can't imagine coping the next couple of days! I feel so grogy and tired that snoozing during the day is a must, it's the weekend, but how can I do this in a working week? A friend did warn of all the drugs that efavirenz was the one to avoid, however I went with the city professors recommendation to take it. Do people take sleeping tablets with this combo? What's taking them in the morning like? Should I have taken Nevirapine instead efavirenz?? Is caffine a help to the fatigue?? I was previously drug naive. My t-cells while waiting for the drugs to arrive curiously went from 300 to 160 (the bigest drop I've known). My Viral load spiked over the past 6 months from 20,000 to 100,000 which is the reason I commeneced treatment. I don't question the need to commence treatment. I have been healthy HIV for 15 years looking after myself with vitamins etc. It wasn't easy to start treatment emotionally, but I took it on board. I kind of fought all those years to stay off the drugs - and succesfully - especially during the testy early years of mono therapy. I'm now terrified to go to sleep expecting the "unknown" side effects I have to deal with in the morning. I'm hoping you can say, "you'll be right mate" in 24 hours...but I know this isn't the case. I'm just very alone, without usual city support networks. And I don't want to feel so weirded out, sick and tired. I have taken the drugs only 2 nights, so I'm new, but it has been hell. Or is this what I have to live with?? Or could it get better in the next day or so? I'm not having the vivid dreams (yet), just the sensation as I said of being thrown off a Merry-go-round and being extremely fatigued. Is there any information to lessen the side effects that isn't sugar coated by the drug company? Thanks for any advice.

Response from Dr. Frascino

Hello Aussie Guy Living in the Outback,

The most notable thing in your post that concerns me is the statement: "There is also no doctors here with HIV experience . . . ." That's a major problem and one you need to carefully consider how to address. We have known for quite some time that HIV morbidity and mortality decrease significantly when HIVers work closely with competent HIV specialist physicians. Is there a chance you can relocate from the back of beyond to a more civilized locale? Ultimately, that may be the wisest decision for your future health and happiness.

Regarding efavirenz, this can indeed be a difficult drug to tolerate, particularly during the first six to eight weeks of treatment. Side effects are reported in over 50% of folks who take the drug. However, these undesirable effects often calm down considerably after six to eight weeks (although not always!). I found your report of disturbed sleep and waking as if you have landed on planet Mars having just been thrown off a high-speed merry-go-round amusing. I remember well how I felt while I was on efavirenz. Some efavirenz users report "zombie brain." Many complain of vivid and bizarre dreams. (I actually enjoyed that particular side effect!) Can I tell you "she'll be apples and you'll be right mate in 24 hours?" Nope. The side effects may decrease over the next few months at best. An HIV specialist should have warned you about this. Also, working closely with an HIV specialist would help you cope with some of the undesirable consequences of an efavirenz-based regimen. However, depending on the severity of symptoms and your current situation (needing to work, for instance), a switch in therapy may be warranted. (Nevirapine would not be my personal next most desirable choice.) There are many potential treatment options open to you, as you have only just begun your first regimen. If you haven't already done so, I would suggest you get a baseline resistance test (genotype) to help guide antiretroviral selection.

I'll post below some information from the archives pertaining to efavirenz side effects that may be helpful for you. Certainly, a fine "cuppa" caffeine can be both enjoyable and energizing.

Good luck mate! And do consider moving back to civilization sometime soon. You can then eat vegemite rather than witchetty grubs.

Dr. Bob

Atripla and Fatigue Sep 21, 2008

Hey Doc,

I have been on Atripla now for about 6 weeks and all of the side effects seems to have passed except for the drunk feeling and fatigue. When I say drunk Feeling being that I have never been actually drunk or high before I am only guessing that this is what it feels like based off other posts of people describing their feeling. I started with a very low cd4 count of 23 and this is my first meds so I know that it might be rough on me at first but I am wondering if in your experience those patients on Atripla who say after a while the side effects go away does this mean those patients are just used to this extra fatigue or does it actually GO AWAY?

Also I have not gotten a new cd4 test yet I am due in 2 weeks but as my cd4 raise would that actually help me to not feel "drunk" or tired from the Atripla or is it safe to say that at 6 weeks in the feelings that I am having are here to stay?

I know that its always tough to say what causes fatigue but I have been pos for 10 years and I can tie my fatigue down to the DAY I started Atripla. Of course its nothing like day 1 as I can live with it now I just dont like it .. Im not nearly as out of it as I was that first day but I also am not sure if this is a feeling that I just have to get used to and how much longer i should wait before I start to consider other options.

Thanks

Response from Dr. Frascino

Hello,

The most likely culprit for your drunken feeling and fatigue, if it is related to Atripla, would be the efavirenz (Sustiva) component of that medication (efavirenz, tenofovir and emtricitabine). Over 50% of folks who take Sustiva or a Sustiva-containing medication, like Atripla, feel central nervous system side effects. Often these effects diminish over six to eight weeks, but not always. If you continue to experience significant drug side effects after the eight-week period, a change in antiretroviral therapy may be warranted. (I've addressed this situation a number of times in the past. See below for a sample from the archives.) I'd recommend you talk to your HIV specialist about your medication side effects and your treatment options. As this is your first regimen, chances are you have a number of other very good regimens you could consider. They may not be as convenient as your one-pill, once-per-day dosing schedule, but they might be better tolerated. Quality of life must be factored into all treatment equations.

Good luck.

Dr. Bob

Atripla side effects Aug 22, 2008

Dr. Frascino, I've been positive for 3 years now. I started taking Atripla last October and after 2 months my viral load was undetectable. My CD4 count is now just above 300. My problem with Atripla is even after almost a year I still feel light-headed in the morning till around noon lunch, sometimes I wake up in the middle of night and can't get back to sleep, and if I drink caffeine on an empty stomach I feel light-headed. Also, I felt tired all summer in the heat. I just don't have the energy I used to have. I never had any of these problems before taking Atripla. My wife thinks I just need more rest. Any suggestions?

Response from Dr. Frascino

Hello,

There are many potential causes of HIV-associated fatigue. Take a read through the chapter on "Causes of Fatigue" in the archives of the Fatigue and Anemia Forum.

Assuming the underlying cause of your problems is indeed a side effect of your Atripla, which is a distinct possibility, it would most likely be due to the efavirenz (Sustiva) component. I've discussed this issue many times in this forum. See below.

Good luck.

Dr. Bob

Sustiva and fatigue (SUSTIVA AND FATIGUE) Apr 8, 2008

After five years of being POZ I started Sustiva 2/7/08 (no previous combo or resistance issues present). CD4 was 246 and VL 255,000. I had my first blood work done about 4/5 weeks after starting and my CD4 went to 290 and VL dropped to 155. Unfortunately, I'm very tired, foggy, unmotivated, and kinda depressed. I'm pleased about the VL load reduction but my quality of life is very poor. Is it likely that things might improve at this point? I'm considering swapping out the Sustiva for either Viramune or Reyataz. Any preference for either of these drugs, and if so why? My virologic results have been so excellent I'm worried about switching and loosing the viral suppression that I have going on now - especially during the Viramune induction period (is an induction period even necessary?). Some friends have suggested even splitting up the Sustiva to twice a day to diminish the sides. I'm sort of perplexed as to where to go from here. Any light you can shed on this for me would be greatly appreciated. Long time reader and love the job you do here. Thanks

Response from Dr. Frascino

Hi,

Sustiva side effects are legendary and extremely common. In general they do decrease in severity over six to eight weeks. If you're still having significant problems eight weeks after beginning therapy and haven't noted a significant reduction in the side effects, you could consider a switch. My personal preference would be to switch to Intellence, the new non-nucleoside reverse transcriptase inhibitor, if possible. It appears to be very well tolerated and highly effective so far; however, experience with this drug is still relatively limited. I'll reprint below several posts from the archives that discuss Sustiva's side effects.

Good luck.

Dr. Bob

Question about fatique and Sustiva Mar 1, 2008

Dr Bob,

I was wondering if you would give me some advice with some of my concerns about Sustiva? (hope this isn't too long)

I've been on this medication for seven months. In that time I've gone: From CD4=336/19% VL=1,080,000 To CD4=886/33.6% VL=undetectable

I've also been on a very very strict diet of <5g of saturated fats per day, which has taken me: FROM:: Weight:242 Trigs:307 Total-Choles:197 HDL:26 RATIO:7.58 LDL:109

TO:: Weight:195.5 Trigs:105 Total-Choles:155 HDL:33 RATIO:4.69 LDL:93

All my Hemo and Chem panels are in solid green territory.

Since Xmas I've been suffering the following "side-effects": 1) Memory "fuzziness", beyond just age 2) Diminished vision in my left eye 3) General malaise and loss of productivity in the mornings, that is starting to effect my work

In January, I wrote in to Dr Whol about the first two symptoms, and based on the information I provided he suggested that I speak with my HIV specialist about a possible adverse reaction to Sustiva being one possible root cause for these neurological issues.

After a lot of looking we figured out that the issue was being caused by the fact that I was eating, what equated to a full meal, each night when I took the Sustiva. Since I wasn't having any of the obvious GI related side-effects we assumed that I was tolerating the Sustiva very well, and the Dr said that my practice of an occasional bowl of sherbet before bed was probably fine. But during the holidays, with all the left overs, that occasional snack pretty much started to turn into a full meal.

So we figured out that with eating as much as I was when taking the Sustiva, that my absorption was very high, which may have caused some of the problems I was seeing. So I stopped eating two hours before and after my dosage of Sustiva and issues #1 and #2 disappeared in about three days. Honestly I was a little surprised that the issues resolved so quickly, and that really gives me some new insight on how active these drugs are.

The issue now is that I'm still having problems with my third issue: "General malaise and loss of productivity in the mornings, that is starting to effect my work."

Just to confirm that my diet wasn't having an adverse effect on my hormone levels (to reach such low saturated fat levels, a goodly part of my diet is now Soy), we even ordered a test of hormones, which all came back normal.

So, finally, my question: How likely is it that Sustiva is the culprit for this remaining issue? I'm going to engage my "Employee Assistance Program [EAP]" at work to get some focused psychological counseling, to help me try to wrap my hands around my problems of procrastinating, but I'm also wondering if I should seriously consider going off the Sustiva? Since my results have been so dramatically good, I really don't want to mess with a good thing, but if I can't get my arms around this loss of productivity then I'm going to be in serious trouble, and soon.

Another *BIG OL BEAR HUG*, -Zac

Response from Dr. Frascino

Hey Zac,

General malaise, loss of productivity in the mornings and procrastination are all rather general complaints. Psychological evaluation is a good idea. There are a variety of psychological conditions, ranging from depression to anxiety, which can be associated with symptoms like these. As for Sustiva, one possible way it could be related would be its tendency to cause vivid dreams and disrupt sleep. If you are not getting adequate sleep/rest at night, that could account for some of your sluggishness in the morning. Some folks also complain that Sustiva just makes them feel like a "wool-headed zombie." You could try taking the Sustiva a bit earlier in the evening (if convenient) to see if there is any difference the next morning. I certainly agree your results on Sustiva have been excellent both virologically (viral load plummeting form 1,080,000 to undetectable) and immunologically (CD4 count skyrocketing form 336 to 886). Consequently we wouldn't want to switch off this regimen unless you were fairly certain the symptoms you are experiencing are indeed related to the drug. If indeed a switch is necessary, a new drug in the same class as Sustiva (non-nucleoside reverse transcriptase inhibitor) has recently been FDA approved. It's called Intelence. And from the limited experience we have to date it does not have a Sustiva-like side effect profile.

Thanks again for the hugs. Consider yourself cyber-hugged back.

Dr. Bob

Sustiva and possible Fatigue Jan 25, 2005

Dr. Bob,

I read one of your responses regarding Sustiva and its possible side effects. I have been on Sustiva since September 2003 and continue to have wild dreams. Unfortunately, not the sexual ones as many have claimed, but intense, action, drama (as if I'm in a movie), etc. I wake up so exhausted every morning because I appears that I have been living the dream. Are there ways that I can suppress the side effects with diet or other methods? Ambien seems to work, but I don't want this to be a constant remedy. I try not to eat late since I have read that fatty/heavy foods can cause intense side effects. Not sure of what else to do. The Sustiva/Combivir combo is working in regards to labs so I don't want to switch - No VL and T-cell of 600. Any suggestions or just live with it.

Response from Dr. Frascino

Hi,

Over 50% of folks who start Sustiva report undesirable side effects. Of these, the vast majority note the undesirable effects decrease to a very tolerable level within four to six weeks. Approximately 5% of folks ultimately need to discontinue Sustiva due to ongoing problems.

As for ways to suppress the "vivid dreams" side effects with diet and other methods, here's what's been tried with some success:

1. Sustiva taken with food increases blood levels and possibly may increase side effects, so taking it on an empty stomach might help.

2. Using a sedative, such as ativan, trazadone or haldol, for several weeks might help; although the vivid dreams may return when the sedative is discontinued.

3. Splitting the dose by taking 200 mg in the morning and 400 mg in the evening might help.

4. Switch off Sustiva to another medication in the same class that doesn't have this particular side effect, i.e. Viramune.

5. Try to change your intense action drama dreams into the more desirable sexual ones by watching your favorite porno tapes before going to sleep. At least you'll wake up exhausted and satisfied, rather than just exhausted. (OK, OK, I just made that last one up, but hey . . . . )

Good luck. You do have options if this is becoming a quality of life issue. Talk to your HIV specialist and pleasant dreams!

Dr. Bob


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