Dec 6, 2005
I began my ride with HIV Nov 3rd 2000. I began with a viral load of 16,000 and my cd4's were at nearly 900-I would call this early detection-yes? (I was applying for mortgage ins.for my wife and kids(still newlyweds at the time... and next call was from the health dept.WHAT A KICK IN THE PANTS HUH? I took AZT from a non specialist for about three weeks.Stuff about killed me. I then proceeded to find a specialist in the DFW area...Dr.S Immediately began treatment with Epivir,Zerit and Viramune. Johns Hopkins wouldve sent me home with those lab numbers-yes? However I was/am in agreement that starting treating was what I wanted. Kill this s**t,that was my thinking... My viral load dropped to undectable within 30 to 45 days and still is to this day.My cd4 floats between 495 and 650 The only change was adding Ziagen,removing Zerit. The d4tZerit was knockin the fat off my legs at year 3 and it was alarming to say the least. So anyway(bear with me please.I'll get to it.)Now,since '03 its been Ziagen,Epivir and viramune and while I realize this is the most common of all complaints,a battle with fatigue began after adding Ziagen that I struggled with for two years.Until presently I cannot beat it anymore...WHAT might be the likely culprit with my fatigue? any answer will do as long as it's your best guess(I know we're all still in a learning curve here) Also know that I tried to do the Epzicom once a day recently and COULD NOT tolerate it. felt like the AZT all over again. Would you possibly suspect that a tolerance problem is to blame,considering I couldnt take the Epzicom,the very same medicines I can barely tolerate with twice daily dosing?? My HIV is well controlled ,but the quality of life has got to be better.I dont think(as probably many don't) that I have complained about tolerance problems simply because I could struggle along with it but did NOT know just exactly to what level of misery I was to expect to feel...all HIVers must have had to deal with that not knowing how thier suppose to feel. Aaand Finally I am about to switch physicians to The famous Dr. Dan and discuss the possibility of changing medicines to maybe something less toxic than Ziagen... Now,Dr.Robert,Please. I want to know your thoughts on this changing meds/fatigue battle.NOT just good luck with your new Dr. and I hope they'll find an option to work with you on... I Hope this question made some sense... and would like to say thank you to you and all the Dr's and their time and efforts here...A donation is forthcoming. thank you Dr. Be Well, Steven p.s. I hate to change meds because the 3 Im on no are without fat lipo/wasting qualities. But I have a 2 yr old which my wife and I concieved by the way.And I cant be so tired she outruns me. THAT breaks my heart.
Response from Dr. Frascino
I'll make a couple of quick points about your story and then proceed to your questions.
1. AZT monotherapy in the year 2000 reveals shocking incompetence. That non-specialist is dangerous.
2. Starting therapy with a CD4 of 900 and viral load of 16,000 is controversial at best. Yes, Johns Hopkins and the vast majority of HIV specialists, including me, would have advised against it, unless it could be demonstrated you had been very recently infected and you had enrolled in a clinical trial to monitor the effect of early intervention with HAART.
3. "Kill the s**t" is a common desire when one realizes they are HIV infected. Unfortunately we don't have the medications that can eradicate the virus. There is no cure yet. What we do have are potent medications that can dramatically decrease HIV viral replication. Unfortunately these potent drugs all have serious long- and short-term side effects and toxicities. Consequently we are still learning when the best time is to intervene with therapy, balancing the potential side effects and toxicities with the demonstrated benefits. That brings us right to your particular situation. You are not having problems with HIV, but rather with tolerating the side effects of your treatment.
Finally, on to your specific concern fatigue. Fatigue in the setting of HIV disease is remarkably common and significantly impacts quality of life. HIV-related fatigue is often multifactorial in nature. That means there is often more than one underlying cause contributing to the overriding sensation of being tired. There are a number of common (and even greater number of not-so-common) potential underlying causes. I've addressed these many times in the past. I'll encourage you to review the information related to anemia, hormonal imbalances, unrecognized infections, psychological causes, medication side effects, etc. in the archives. (I'll repost one of many responses that touch on some of these factors.)
Finally, could Ziagen be contributing to your problem? Yes, it's possible, particularly because you mention ". . . a battle with fatigue began after adding Ziagen . . . ." I have seen other HIV-positives complain of significant fatigue related to Ziagen. However, as I stated above, I also wouldn't immediately presume this is the only factor zapping your zip. One medication switch you might consider is swapping Truvada (Viread/Emtriva) for your Ziagen/Epivir. This would simplify your regimen and avoid the drugs most commonly associated with lipoatrophy (fat loss). Chances are your new HIV specialist will not only thoroughly evaluate the potential causes of your fatigue, but also discuss with you your various treatment options for other HAART regimens.
Thank you fro your donation. And hopefully this qualifies for more than "just a good luck with your new Dr." response. Although I really do wish you that as well.
Exhausted Also- Pilot Here AgainNov 17, 2001
First off Thanks for all you help on this site. I decided to stay on the Combivir & Sustiva. Last counts were <50 and VL 1180. Poz since 1/2000. I was 185 now down to 165 just want to sleep all the time. Taking a handful of vitamins every day. Haven't said a anything to my doctor. Any help before I go see him next week. Sorry about the crying kids & the sorry food on the plane. Would like to help-but u know how that this. Come to Texas- I can sure fix the food problem
Response from Dr. Frascino
Thanks for writing back. So at this point, you are on Combivir and Sustiva. I'm not quite sure what you mean by "last counts were <50 and VL 1180." Is your viral load non-detectable at less than 50 or is it 1180? Also, not sure about your 185 down to 165. Is that your weight or your CD4 count?
Well, whatever the numbers, the big problem appears to be the fatigue. Sleepy pilots are never a good idea! I'm not exactly sure what advice I gave you last time (hopefully something brilliant, or at least helpful), but I would strongly suggest that you talk about your fatigue with your doctor. Certainly you should evaluate the relatively common causes:
1. Inadequate rest, sleep, and/or exercise. It's often difficult to find the time to get adequate amounts of sleep and exercise. This is extremely important for those of us with HIV and an often-overlooked cause of fatigue. Nutrition can also play a vital role in our health and overall energy level.
As a pilot, you probably have to contend with multiple time zone changes, which may disrupt sleeping cycles. Also, Sustiva is well known to cause sleep disturbances. Is your sleep not only adequate time wise, but also restful and uninterrupted? Are you exercising regularly? Have you had your diet checked by an HIV-knowledgeable nutritionist?
2. Psychological Causes. Stress, anxiety, and depression are all associated with excess tiredness and fatigue. All of us living with HIV go through periods of feeling anxious or depressed. HIV-related anxiety and depression are frequently unrecognized causes for fatigue. These conditions are very amenable to treatment.
3. Opportunistic Infections. Many HIV-related opportunistic infections can be associated with fatigue. If your CD4 cells are under 200, you are at greater risk for these infections. By the way, if your CD4 count is under 200, you should be on a medication to prevent possible PCP infection. Fatigue can be the first sign of an opportunistic infection - viral, bacterial, fungal, or parasitic. Pay close attention to other symptoms, such as cough, fever, headache, or diarrhea, which may point to the presence of an unrecognized infection.
4. Endocrine Abnormalities. Hormonal imbalances can cause fatigue. Hypogonadism - decreased testosterone production - is very common in HIV-positive men. Testosterone helps regulate men's moods, sexual function, nutrient metabolism, and energy level. Replacement therapy is readily available. Adrenal insufficiency - inadequate production of adrenal hormones - can results in fatigue, weight loss, decreased blood pressure, dizziness, and, if left untreated, even death. Other hormonal imbalances, such as inadequate production of thyroid hormone, can also cause fatigue and a variety of other symptoms.
5. Medication Side Effects. Both prescription and over-the-counter medications, herbs, and other products can cause fatigue. Antihistamines often found in allergy medications are common examples. Certainly HIV medications can also have fatigue as a potential side effect.
6. Anemia. One of the most important causes of fatigue in the setting of HIV disease is anemia. This decrease in red blood cells or the oxygen-carrying hemoglobin contained in red blood cells can be caused by HIV medications, complications of HIV infection, and even HIV itself. Anemia is diagnosed by measuring the blood hemoglobin levels (normal range 14-18 g/dL for men and 12-16 g/dL for women). Treatment depends on the cause. If the anemia is caused by a deficiency of iron or vitamin B12 or folic acid, then replacement with supplements should correct the problem. If it is caused by certain medications or HIV itself, then treatment with Procrit would be best. Procrit stimulates the body's bone marrow, the red blood cell factory, to make additional new red blood cells. You are taking Combivir, which contains AZT. AZT is well known for suppressing the bone marrow and causing anemia. I would suggest that you review these common causes of fatigue with your HIV specialist. He/she may want to run some blood tests to check if you have low testosterone, or if you are anemic, etc. Hopefully, by identifying the causes of your fatigue, you'll be able to correct the underlying problem and regain your usual energy level. Remember, HIV-related fatigue is often multifactorial, so you'll need to evaluate and treat all the potential causes to get the best results.
Now, since you can't help with the rubber chicken in brown sauce meal or the screaming babies, how about my lost luggage??? And what time should I arrive for the Texas BBQ?
please help me
follow up, fyi (PROCRIT)
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