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Constant Fatigue, Tiredness
Dec 12, 2003

Hi i am 24yrs old 5'7 113ibs 26w. I was diagnosed May 1, 2003 with hiv+ test/and having aids syndrome. My cd4 was 96 my VL was 550,000. I tested negative 1 year previous so i know i havent been infected long or even sexually active very long but was beleived i got a strong strain from sex with a drug user. i had 9 opporunistic infections and viruses from thrush to stomach to colon to sinus/moloscum/wasting syndrome down to 100ibs etc. i started immediatly a line of drugs to fight them all and then went on triz and sustiva which gave me such severe side affects such as vertigo, vomit /upset stomach, dizziness/fatigue/pain in abdomin/irregular heart beats/rash/low blood counts for wbc rbc etc..i was felt like i was going to die and then I lost that combo due to allergic reactions. at that point after triz ans sustiva for 3 weeks VL was 4,600/CD4 101.. then without meds for 2 weeks went to 400,000VL 95CD4 then i went on kaletra and combivir for 4 weeks.. made me violently ill everyday so bad that i was on 3-4 zophran a day for pain and fatigue was great including naseau and dizziness again so after a hard struggle with that i had to give that combo up for making me too sick to bare.. which then brought my VL to 29,000 CD4 to 141.. then i went right onto reyataz/epivir/zerit.. was not so bad at first compared to other combos,but did come with side afects. Now i feel numb all the time as though like im wieghtless, dizzy, lack of energy , get lost easy/feel like i have alzeimers/forgetful/cant concentrate for more than a couple minutes/severly fatigued to point i feel like i'm a waste of space at time, get depressed/loss of appetite/weight headaches.. sore body..can't sleep too well and over 3 months now my rbc is down to 3.8L wbc 3.0L platelets low ect.. seems like i have infections back/have a hard time swallowing again ive had thrush already/and cdiff. After all of this I really feel like i've been hit by a mack truck. My VL is 400 now after 3 months my cd4 is 160 , but I really just feel sick and wasted all the time and want a break on meds or stop meds all together and am so fatigued i don't even want to eat at times. Based on the previous info, my questions are: If i stopped meds all together at this point what possible scenerios will occur? I know i feel much better off drugs than on but my vl goes crazy if given the chance. Based on my numbers and my aids syndrome and constant not feeling well, if my numbers of VL rose back up to 400,000 with my cd4now at 161 could i live a long time without a hiv drug regiman to treat hiv? such as in months or years? and just treat infections as they come? how risky is that? also is there anything i can do to help me want to eat or gain energy? all my blood counts are low so im told to relax and they only get lower each time? I don't knwo where to go from here or what to choose to do but if you could give me some feeling on all of this it would be great to get some advice. Thank You

Response from Dr. Frascino


I'm sorry to hear you are having such a difficult time with your illness. First off, are you under the care of an HIV/AIDS specialist? If not, you definitely need to be.

Potent anti-HIV therapy came into wide use in 1996 when protease inhibitors came on the scene. The treatment mantra became use HAART (highly active antiretroviral therapy) to decrease the viral load and increase CD4 counts. We thought (and hoped) that perhaps these potent new drugs used in combination could eradicate the virus. No where in our thought process at that time were issues of "quality of life." With the first truly effective agents in hand, HIV-treating physicians focused solely on hitting the virus. Within several years, we learned that despite our new potent medications, the virus could not be completely wiped out. We also began seeing a wide array of unanticipated and bizarre side effects. Slowly our treatment mantra has changed. Today, I feel the goal of therapy should be "to keep the patient as well as possible for as long as possible while maintaining the highest possible quality of life." Certainly, control of viral replication (decreasing viral load) and restoring immune function (improving CD4 count) remain an essential goal. However, since we must take these medications for the rest of our lives, quality of life must also be a crucial part of any treatment plan.

With that in mind, what about your particular situation? First off, do you need treatment? If you indeed have only been HIV-positive for one year, and have already progressed to full-blown AIDS with "9 opportunistic infections," a CD4 count dipping below 100, and viral loads reaching 400,000, then yes, therapy is definitely warranted.

Second, what should you take? Considering the possibility you acquired a very aggressive strain of virus and that you have been on several medications already, I would strongly recommend obtaining resistance testing both genotyping and phenotyping, if possible. This information, plus your past history of medications taken, drug intolerances, and allergic reactions should be reviewed by a competent (and hopefully compassionate) HIV specialist. The specialist should then be able to advise you of your various treatment options. For instance, if your "allergic reaction" was felt to be due to the abacavir component of your Trizivir, this medication must never be reinstituted, as the reaction could get worse and even be potentially fatal.

Also, some combination regimens are now considered to be suboptimal (especially for advanced disease or high viral loads). An example would be any triple nucleoside regimen. Your resistance tests would let you know if certain medications should be avoided, due to predicted decreased efficacy or specific genetic mutations. Add to this a thorough knowledge of drug-drug interactions, drug side effects, and drug toxicities and you can see why an HIV specialist is critical in helping you choose a regimen that's best for you.

Next question: Should you stop all medications because you want a break and feel better off them? Presently, your viral load is 400 (fairly good, but not "undetectable") and CD4 count is 160 (better than your original 96, but still not good enough to put you out of risk for opportunistic infections). Stopping medication in the past has resulted in a very rapid (two week) rise in your viral load and decline of your CD4 cell count. We can anticipate this will most likely happen again. Further deterioration of your immune status will most likely lead to additional and more aggressive opportunistic infections, not all of which may be treatable. I do realize the medications can be difficult to tolerate, but from what you wrote, you were not feeling all that well at the time you were initially diagnosed either. The key here is to develop a treatment regimen that holds the most promise for being effective, yet is also tolerable for you. By decreasing your viral load and allowing your CD4 count to increase, you will be much less prone to opportunistic infections and "healthier." Would it be risky for you to just avoid anti-HIV meds and treat the opportunistic infections as they come along? Yes, I feel this would be very risky for you.

Next, what about your wasting? Again, an HIV specialist will need to evaluate the potential causes. Certainly, if you are having difficulty eating due to infections, these need to be treated aggressively. If you have no appetite, appetite stimulants, such as marinol, could be considered. The use of anabolic steroids, such as Oxandrin, may also be extremely beneficial.

How about your fatigue? Many overlapping causes could be contributing to this --- including:

1. HIV itself. Chronic viral infections, particularly if they are advanced, aggressive, or poorly controlled, can cause fatigue.

2. Inadequate nutrition. If you are having difficultly swallowing and/or anorexia (lack of appetite), you probably are not getting adequate nutrition.

3. Hormonal problems hypogonadism (low testosterone), adrenal insufficiency, and decreased production of thyroid hormone all should be looked for and treated, if found to be present.

4. Opportunistic infections. You've had a variety of them in the past, and with your relatively depressed CD4 count, others may also be present. Watch for potential sings fever, cough, headache, rash, diarrhea, etc.

5. Medication side effects. Some medications are more prone to cause fatigue than others. Your HIV specialist will need to evaluate your current meds and advise you about future options.

6. Psychological causes, such as depression or anxiety, can be associated with fatigue.

7. Anemia. You mention your blood counts are low. This could be due to many factors HIV itself, opportunistic infections, blood loss, drug side effects (AZT), etc. The cause(s) needs to be identified and treated aggressively. Treatment of anemia may be as simple as supplementing your diet with iron, vitamin B12, or folate, if a nutritional deficiency is your problem. Alternatively, if you have anemia of chronic disease (resulting from HIV) or anemia that is drug-induced (AZT), then Procrit would be your best treatment option. Procrit is a medication that stimulates the body to make additional new red blood cells, thereby correcting the anemia. Anemic HIV-positive folks treated with Procrit have been found to have improved energy levels and enhanced quality of life. There is even an association with improved survival.

There are many other things I could comment about, but I feel the above issues are the most critical and require the most immediate attention. I do strongly believe that with the proper knowledge, attitude, and the help of a competent HIV specialist, things can and will bet much better for you. Integrating "quality of life" into your treatment equation is essential.

Good luck.

Dr. Bob

Procrit not safe?????

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