Side Effects – Letters to The Body.com

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Ask the Experts about Managing Side Effects of HIV Treatment

Lactic Acidosis=Death?

Jun 18, 2003

Hello -

I’m a 32-year old man who’s been poz for 14 years (yes, since I was 17 or 18). Though I’ve managed to hang on more or less through the years, the last few have brought serious problems with various organs, most notably pancreatitis and liver and kidney failure. My virus has not been under control since ’97 as I have serious resistance to all currently available meds (inc. T-20).

Currently I’m going through my 2nd round of liver failure this year (and it’s only June!) with drastically elevated liver enzyme numbers, and also very serious lactic acidosis. To the point where my doctor has advised me to”get my life in order” as without a major turn-around in these numbers, I probably have only from weeks to months left to live.

My doctor is not an alarmist, and is, in fact, highly respected in the HIV/AIDS circles of SF. I do not doubt his prognosis. What I wonder about is if there’s anything I can be doing to help move these numbers in the right direction.

So far, we’ve cut out all HAART drugs, leaving the bare minimum of prophylaxis-type and treatment-type drugs, principally valcyte (which has failed in conjunction with my gancyclovir implant to get my CMV Retinitis under control).

At the advise of my liver specialist, I’ve been taking Urso250 for several months, and my primary doc has me doing baking soda (1 t./8oz water) 2x/day to try to lower the acidosis. We did this bicarb treatment once before when I was hospitalized for kidney failure and acidosis in 2002. I’m religiously following this protocol, though drinking the bicarb solution nearly makes me want to throw up. I’m wondering if there are any additional things I might be trying to get both the liver numbers and the acid level down. Would exercise help or hurt? If helpful, aerobic or resistance? Increased hydration? Dietary changes? Sorry…I’m kinda desperate here. Considering I’m apparently so close to death, I feel more or less OK – not particularly “well”, but I’ve spent entire years feeling much much worse – is this normal?

Thanks for your assistance!

brian

Response from Dr. Boyle

It sounds like things have gotten quite desperate and I am always reluctant to step in to situations like this since I don’t know enough about you to start treating you. It sounds like your doctor has been very thorough and is very familiar with your situation, so whatever is said here should be cleared with him/her before you try it. Since you are having problems with lactic acidosis discontinuation of your nucleoside analogues is essential.

A trial of riboflavin, thiamine and coenzyme-Q might be appropriate despite very little clinical data to support their use, since they are relatively benign and may help. If your T cells are a problem, and it sounds like they clearly are, you could consider using an NNRTI/PI combination, but you need to be extremely cautious about this since they could worsen your liver disease.

In that regard, I would clearly avoid nevirapine and high-dose ritonavir since these are the worst about causing severe liver disease. If your lactic acidosis resolves and these medications are not enough, a trial of abacavir, tenofovir or lamivudine is likely to be safe, but it sounds as if your HIV is already resistant to those drugs. Regarding your specific questions, exercise is not likely to help, but you should remain well hydrated and talk with a dietitian about dietary considerations for your pancreatic, kidney and liver disease. Finally, you should be on some form of prophylaxis for PCP and perhaps MAC and bicarb can be given as a tablet; you should discuss these issues with your doctor.

LACTATE IN BLOOD

Jun 27, 2001

HI DOCTOR HENRY

I HAVE BEEN ON AZT, 3TC AND SUSTIVA FOR ALOMOST 2 YEARS. VL AND CD4 IN JAN 01 WERE <50 AND 440 RESPECTIVELY.

MY LATEST BLOOD TEST ON JUN 01 WAS FOLLOWINGS: SUGAR 112 BUN 17 CREATININE 0.6 CHOLESTEROL 186 TRIGLYCERIDE 117 HDL-C 49 LDL-C 114 SGOT 24 SGPT 23 LDH 300

LACTATE 5.8 (EXPECTED VALUE IS 0.63-2.44 MMOL/L)

I HAVE BEEN ON MILD STOMACH DISCOMFORT, NAUSEA, AND FATIGUE/FELING WEAK DURING DAYTIME FOR ABOUT ONE MONTH. THESE SYMTOMS ARE NOT GETTING WORSE. I CAN TOLERATE. MY DOCTOR TOLD ME TO REPEAT THE TEST IN A MONTH AND DON’T CHANGE ON DRUGS REGIMEN. BECAUSE THERE MIGHT BE SOME ERRORS ON THE TEST SUCH AS KEEPING CONDITION OF SERUM, WEAKNESS OF MYSELF DURING THE TEST, AND ERROR IN TESTING PROCESS.

WHEN HE LOOKED THROUGH SGOT AND SGPT RESULTS, LACTATE SHOULD NOT BE THIS LEVEL.

HOWEVER I AM VERY WORRIED ABOUT THIS LEVEL WHICH IS OVER 5 MMOL/L, IT CAN LEAD TO LOSS OF ENERGY IN THE CELLS AND CAUSE ORGAN FAILURE AND A HIGH RISK OF DEATH. THIS IS STAGE OF LACTIC ACIDOSIS.

1. WHAT ACTIONS SHOULD I TAKE? 2. WHAT OPTIONS DO I HAVE IF I HAVE COME OFF MEDICATIONS AND SUBSEQUENTLY CHOOSE TO SEEK OUT OTHER MEDICATIONS? 3. HOW WOULD YOU TAKE ACTION IF I AM YOUR PATIENT? 4. IF YOU HAVE ANY IDEAS PLEASE FEEL FREE TO RECOMMEND.

THANK YOU IN ADVANCE FOR YOUR KIND ATTENTION AND HELP.

WITH WARMEST REGARDS WILLIAM

Response from Dr. Henry

I would recommed that the lactic acid level be carefully repeated (on ice with no exercise in the day before)more quickly such as in the next week. If better then that would be reassuring- if worse then consideration should be made to stop your therapy. Vigorous hydration, use of extra B1, B2, vit C, and perhaps co-enzymne Q/L-carnitine could be considered (no firm data on benefit). That level of increased lactic acid is modest and the symptoms-though worrisome- are non-specific. I would repeat the lactic acid in the next week. KH

LACTIC ACIDOSIS

Feb 8, 2002

Hi, I had my first resolt for lactic acid in my blood: 30 while maximum tolarated is 18. All opther tests are fine. I have been on nukes for 13 years. Am I in big danger of becoming ill and developing lactic acidosis? Thanking you, Luc/belgium

Response from Dr. Henry

If you are having no symptoms and no other blood test abnormalities (such as liver enzyme elevations) you most likely just need to be monitored and watch carefully for symptoms. The lactic acidosis test is a tricky one and can be influenced by just a little exercise or small issues related to the handling of the specimen. If your HIV doc is Ok with the situation I think being careful but continuing your meds is reasonable. KH

LACTIC ACID

Dec 26, 2002

AS A SIDE EFFECT FROM 6 YEARS OF NRTI S, MY LACIIC ACID LEVELS ROSE TO 46. NORMAL IS 12. AFTER 16 WEEKS OF STOPPING MEDS, LEVELS WENT DOWN TO 12(NORMAL). THEY STAYED THERE FOR A MONTH WITHOUT MEDS, THEN SUDDENLY SPIKED TO 26. WILL THEY COME BACK DOWN? AM STILL OFF MEDS WITH NO SIDE EFFECTS BUT SCARED I KNOW HOW SERIOUS THESE ELEVATED LEVELS ARE. MY DOCTOR SAYS HE IS SAILING UNCHARTED WATERS. THANK YOU. S.N.

Response from Dr. Boyle

It is tough to say how signficant those numbers are, especially since you don’t mention that you have ever been symptomatic. I would collect the next lactate level very carefully (e.g., no alcohol or exercise for 24 hours prior to its being drawn, no tourniquet use, etc.) and send it to the lab immeditately on ice, but even if it came back somewhat elevated I would not be greatly concerned unless you develop symptoms or are shown to be actually acidotic. If the lactate is documented to be elevated, you may want to consider a nucleoside analogue sparing regimen when you restart ARVs.

side affects

Nov 9, 2008

I’m a fifty year old female and taking atripila due to hiv I have been having the side affects of weird dreams and bloating and anxitey but at the same time I’ve have been goin thru some family issues due to illness and it has took a toll on me. so is there a diet that i can follow to avoid some side effects?

Response from Dr. Henry

For Atripla the side effects (most intense in first several weeks-usually diminish by week 4) can be worsened if taking the Atripla within hours of consuming a high fat content meal or snack (fat increases levels of efavirenz). Taking on empty stomach in the evening if often preferred. KH

Kaletra + Truvada = rash

Nov 9, 2008

I recently started HAART with standard dosage of Truvada and Kaletra. On day 10, I started to develop a rash over most of my chest and back with it starting to spread to my arms. How long will the rash last and should I talk to my doctor about switching medication? Also could this be because my immune system is reactivating? I don’t really have any other side effects so I’d prefer to see if I can get over the rash.

Response from Dr. Henry

Rash associated with Kaletra/Truvada is usually fairly mild and usually doesn’t necessitate stopping or switching the medications. Antihistamines such as Benadryl often helpful. There are often flare-ups of follicultis or other skin conditions when starting potent HIV treatment (part of the immune reconstitution syndrome you mention)-finding the cause of a mild rash can be a challenge. I would inform your HIV provider so he/she can monitor your status. KH

am suffering from pain and cramps in my limbs

Nov 14, 2008

I am a 48 year old caucasian positive female. I have been positive since 1993.I started taking antivirals in 2001. I was taking combivir and virumune. About a year ago i changed to Truvada and Virumune.My viral load is undetecatable and my cd4 coun is about 527. I am also taking lipemol 10 for cholestrol.This i did of my choice as i have high cholestral in my family and it increased when i started antivirals. I also take a multi vitimin and cod liver oil daily. I take stillnox to help me sleep. living on a small Over the last six months i have been suffering from cramps, tingling and pains ,sometimes shooting pains, tingling, buring sensations, mainly in legs but also my arms and hands. The numbness particually affects my hands, more so in the mornings. I have told my doctor who says it is a small problem not to worry about. There is a also a slight language problem as Spainish isn’t my first language. I am very concerned about these symptoms and would aprreciate any advice you can give me. Thank you in advance. From vey worried.

Response from Dr. Henry

The symptoms you describe would genreally not be directly due to HIV or your HIV treatment. Vascular problems, cryoglobulinemia, thyroid or other hormonal problems, neurologic conditions, stress, and other possibilities need to be considered. A good history and physical and lab evaluation can often help sort out the possible causes. In some cases a referral to specialists such as neurologists might be useful. KH

Ngative side effects with Tripla

Nov 14, 2008

I started taking Tripla three months ago and over this period of time that all of my hair has becom very brittle and I have gained about 25 pounds. Nothing in my festyle has changed except for switching to this mediation that I can correlate to these adverse effects. However I haven’t found anything written indicating that Tripla may cause these sysmptoms. Can Traipla cause these side effects or should I look at the possibility of something being the root cause.

Response from Dr. Henry

Atripla can sometimes cause hair problems (? most often due to the FTC). A large number of medical conditions (such as thyroid problems) can contribute to brittle hair. Many patients can weight during the first year on effective HAART but 25 pounds is excessive. Hypothyroidism and other medical conditions may contribute so a thorough history, physical/lab exam, and nutrition assessment is often a good idea. KH

why wont you answer?

Nov 14, 2008

I have asked questions here ehey hav not been answered.I have asked me questions and have not received an answer. I would like to know what is going on which to me. I’ve heard from my Dr. that it may be my nerves and I want to be sure. I have I have numbness in my hand and pain in my feet. Why is that?

Response from Dr. Henry

This forum is focused exclusively on discussion related to side effects of HIV treatment. What is your HIV status, which HIV meds are you taking, what other meds are you taking, what other medical conditions do you have? KH

Isentress side effects

Nov 14, 2008

I started Isentress 30 days ago and I’ve been experiencing extreme itching in my lower extremities and rather annoying abdominal pain (it feels like a contusion inside of me). Will these diminish over time or just another fact of life with HIV? Thanks

Response from Dr. Henry

Raltegravir (Isentress)has been a generally well tolerated with fairly low rates of skin problems and abdominal problems. Usually raltegravir would be used with other HIV meds; some of those may more commonly cause or contribute to skin or stomach complaints. There are also a number of symptoms that can occur due to immune reconstitution, depending on your HIV status. Many other non-HIV conditions can also cause some of those symptoms so a good history and physical/lab examination may be warranted. KH

Diarerha

Nov 16, 2008

I have had dierraheafor over a week. I take atripla,Im udetectable and mycd4 countis over 600. What can I do to stop it?

Response from Dr. Henry

If you have been on Atripla for a while without diarrhea and now have a week of severe diarrhea it is unlikely due to any of the components in Atripla. If you are just starting Atripla a small % of patients develop significant diarrhea most often due to the tenofovir. If you have been taking Atripla for a whil then the diarrhea most likely due to an unrelated problem such as a gastroenteritis (often viral, sometimes bacterial or parasitic, sometimes food induced). You need to keep hydrated and contact your HIV provider or primary care physician to consider an evaluation for the cause. KH

Does Kaletra cause Lipo problems?

Nov 16, 2008

I know Azt, Zerit can cause Lipo problems. Does Kaletra also really cause this?

Response from Dr. Henry

Kaletra may contribute to fat gain but generally has not been linked as much to fat loss. KH

Diarrhea

Nov 16, 2008

I’ve been taking the Norvir-Reyataz-Truvada combo for a couple months now and no problem. Then I had a root canal and was put on the antibiotic Clindamycin for a few days. I stopped after 4 days, cuz the diarrhea was so terrible. That was over 2 weeks ago. My CD4 is way over 500 and my virus undetectable. I’m eating yogurt almost everyday now and no change. Would this antibiotic change the way my gut deals with the HIV meds? Or was the antibiotic never the issue and is this just a normal side-effect? Should I try some kind of special pro-biotics? Is has got to stop. Thanks!

Response from Dr. Henry

Post clindamycin diarrhea is often due to a disturbance in gut flora frequently aggravated by Clostridium difficile overgrowth. You need to have a stool evaluation for C difficile and other pathogens as well as an exam by your HIV or primary care doc. KH

Atripla Side Effects

Nov 19, 2008

I started taking Atripla about a month and a bit ago, and noticed that I would bruise easily when I am carrying something heavy on my shoulders. At first I put it as the bag being heavy.

However yesterdayI srated playing volleyball (after taking afew months off) and this morning I noticed that I had some bruising on my forearm which has never happened. What should I do and should I be concern?

Response from Dr. Henry

Atripla rarely causes any bleeding problems. HIV infection can cause a low platelet count resulting in easy bruising. Other medications (such as aspirin) can increase bruising as can other medical conditions so as assessent by your HIV specialist or primary care doctor is recommended. KH

stocrin side effects

Nov 19, 2008

i have been on stocrin and aspen lamzid for almost 6 months and i notice that i’m going pale and my periods are not flowing. is anemia a side effect of these medications?

Response from Dr. Henry

Aspen lamzid is the generic combination of lamivudine (3TC) and zidovudine (AZT) which can cause anemia. If severe anemia is confirmed then if possible a switch to an alternative nucleoside combination would be advise (if available in your area). KH

kidney stones

Nov 19, 2008

Hi I take norvir, reyataz 300, ziagen and retrovir. My problem is that I have had kidney stones 2x in the past 6 mos. Does the meds or hiv cause kidney stones.

Response from Dr. Henry

Kidney stones occur fairly commonly in the general population with some genetic tendencies within families. Examination of general health and kidney status and of a stone for calcium, urate, or atazanavir is recommended (Reyataz or atazanavir can cause kidney stones is small % of patients). In my experience I have seen 2 patients develop stones likely due to atazanavir (out of many hundreds on the drug)which did not recur when atazanavir was switched to an alternative drug. KH

Frequent urination after atripla

Nov 21, 2008

It’s been 2 days since I started atripla and I pee a lot. Why is that?

Response from Dr. Henry

Atripla would rarely cause polyurua within two days of starting but sometimes the nervous system side effects can have odd manifestations such as urinary frequency. More often there may be other issues such as high blood sugar or urine infection that may warrant discussion with your HIV provider. KH

Diarrhea

Nov 21, 2008

Hello,

I just started a new cocktail and have been experiencing very bad bouts of Diarrhea…

I am currently taking Truvada/Kaletra… I was currently taking Truvada/Viramune however I built up an immunity to the Viramune over two years. I did have the geno type test done.

My t-cells are 320..vl%20 and my cd-4 is 400…my t-cells have fallen for the fourth time in a row and so did my percentage… My doctor suggested I switch to Kaletra. I have been on my current med’s for one month now and-the dirrhea is almost everyday… Should I consider changing med’s again or give it somemore time and should I see my doctor again for the Diarrhea??

I have been on med’s for almost two years now however I do experience quite a bit of stomach distress with all of them. I have K.S. however the meds have it in check after eight rounds of chemo. I am sure the diarrhea it is from the Kaletra from the research that I have done…. Any suggestions, on diet, etc. ?? Any suggestions would be appreciated..

Thank you,

Danny

Response from Dr. Henry

Diarrhea is a big problem for a subset of patient taking Kaletra. Taking with food is often very important. Taking fiver supplements helps some patients. Taking with a calcium supplement (such as Oscal-D) also helps some patients. Mild antidiarrheal meds such as loperamide or lomotil also can be quite helpful as can use of yogurt supplements.

Some patients have lactose intolerance in which case lactase supplements helps. Many other conditions can contribute to loose stools so often a GI workup is helpful. No one approach is typically helpful so a trial and error approach is often needed but most patients do find some relief (gut problems due to protease inhibitors often will improve over the first several months). If nothing helps then consideration of an alternative boosted PI or other agent is warranted. KH

dizzyness

Nov 23, 2008

Hi Dr. I have been on HIV meds since Jan 2008 been taking Kaletra and Combivir but have been getting dizzy lately where if i dont hold on to something i feel i might fall should i be concerned about this. Thanks for the great information on this site Tony

Response from Dr. Henry

Dizziness due to Kaletra/Combivir is not a common symptom among patients who have taken it for 10 months with no initial problems. Combivir can sometimes cause anemia which can cause dizziness. A good evaluation is recommended since there are lots of causes of anemia both HIV and not-HIV related ranging from middle ear problems to hormonal problems to central nervous system abnormalities. KH

combivir and side effects, how long do they last?

Nov 23, 2008

I was recently exposed to HIV virus via a broken condom. I was prescribed combiver by an ER physcian within 72 hrs of exposure. I have many side effects from the medication like nausea, headaches, body rash, depression, dark circles under my eyes, extreme fatigue, lack of appetite, I just look very ill. Will these side effects last after I quit taking the medication? I am on a thirty day prescription.

Response from Dr. Henry

Fortunately side effects from Combivir generally resolve quickly when the medication is stopped (within several days usually). KH

PI diarrhea

Nov 23, 2008

Started boosted lexiva,truvada in March, now UD and good CD4/and percents

Dentist put me on clindamycin for what he thought was an infected tooth in May (it wasn’t)with immediate diarrhea, tolerable so I completed the regimin.

Had continuous diarrhea even after the clindamycin d/c’d. Normal c diff test but ask my provider if I could take flagyl anyway. Still have weekley sometimes daily bouts of diarrhea so figured it was actually the PI. But if I take a daily probiotic tab, it seems to stop. If that’s the case it can’t be the PI right? PI’s don’t mess up colonic flora, correct?

Response from Dr. Henry

Clindamycin can cause problems with C difficle infection-were you checked for that? Protease inhibitors can cause chronic loose stools in some px which are variably helped by treatments including fiber supplements, calcium supplements, probiotics or yogurt supplements, or antidiarrheal meds. The mechanism of protease inhibitor related loose stools is not clear to me but often related to the ritonavir used as a booster which simply seems to irritate the gut of some patients. KH

Atripla and cocaine

Nov 30, 2008

I am not aware of any reactions between atripla and cocaine, I dont think any have been documented. Although, cocaine is the worst thing you can do to your body having hiv. THE WORST. Any other recreational drug does not come close to the harm that is afflicted on your system than is cocaine. Cocaine has been shown the dramatically increase viral load and thus disease progression… as in it acts of food, in a sense, for the hiv virus. Secondly, it temporarily damps the strength of your immune system (which obviously is also not good. Keep well.

Response from Dr. Henry

Your feedback on using cocaine is appreciated. KH

Rash Is Back

Nov 30, 2008

I had been taking Truvada and Viramune and my doctor stopped treatment due to a rash which covering most of my upper body. We stopped treatment to determine whether it was the drugs or not. Of course it is the Thanksgiving weekend and yes the rash is back. My question is could it still be caused by the drugs which might be cleansing from my body or is it mostly likely something else. I was on Predisone to clear it but I am out, is there something else I can do without a prescription? I am taking Claritin and using Gold Bond max. Any advice and feedback would be so appreciated as I am sleeping very little due to the constant itching. Thank you!

Response from Dr. Henry

If you developed a rash while on HIV meds which has recurred once off HIV medications for several weeks then most likely the rash was not due to one of the HIV medications in your regimen. An evaluaton by a dermatologist is often useful to sort out the possible type and cause of a rash. KH

diarrhea and HIV meds

Nov 30, 2008

I’ve been struggling with IBS/loose stools for a couple weeks now. I’m slowly getting back to normal, I hope. In the interim, I’ve noticed my Norvir isn’t being absorbed. (I’m taking Truvada/Reyataz/Norvir, CD4 is 486) When this happens, should I take another? Which foods and what time is best to properly absorb meds? Thx.

Response from Dr. Henry

Issue of absorption of Norvir is particularly important if your viral level is not suppressed. If continues to be suppressed I would follow while trying to make further improvements is bowel function (many approaches can be variably helpful such as taking with meals, calcium supplements, fiber supplements, macrobiotics or active yougurt, and numerous anti-diarrheal agents). If Norvir absorption still in question consider switch to non-PI based regimen (such as efavirenz or raltegravir). KH

ATRIPLA AND BODYBUILDING SUPPLEMENTS

Nov 30, 2008

Hello, I have been HIV+ for over 4 years. My CD4 count is 350 and Viral load around 9,000. I just started treatment with Atripla. I work out regularly, and two or three times a year I take a stack of supplements for a two week period. This includes Creakic, Leukic and Gakic (All manufactured by Muscletech). Do you anticipate any interactions between any of these and Atripla? Thank you.

Response from Dr. Henry

I reviewed the ingredients of those products and see no major concerns about drug interactions though they have not been formally studied so discussion with your HIV provider and more careful monitoring over the short term is recommended. KH

muscle soreness or fatigue

Nov 30, 2008

I have been on nevirapine in conjunction with other drugs – I think at the moment tenofovir – for over 10 years, and have experienced a kind of muscle fatigue or soreness in my legs, which is an adjunt to my major concern, and the reason for question, and that is that due to the repetitous nature of my work, where I do a lot of lifting, I have acquired chronic medical epicondylitis, and more recently lateral epicondylitis…

I have not found any information pertaining to the medication, but there is reference to muscle inflammation in people with HIV – something my doctor has never mentioned to me…what are your thoughts?…could my arm muscle complaints be just due to the repetition of my work, or might there be something else going on?…I know the nevirapine is a relatively new drug, and the side affects may not be all that well documented, so it does make me wonder…thanks, Rohan.

Response from Dr. Henry

Nevirapine and tenofovir rarely cause direct muscle problems such as myopathy (sometimes seen with AZT for example). Actually nevirapine has been available for a long time so the lack of reported muscle damage from long term use the drug is very reassuring. Blood tests are available that can assess whether any muscle irritation is occuring (in some cases a muscle biopsy is needed for diagnosis). Muscle aching is common in the generally population and often is related to repeated stress on the muscles/tendons. KH

Rash

Dec 3, 2008

willthe rash clear off iam on truvaa ,purbac and neraropine

Response from Dr. Henry

Rash usually will clear over several weeks with symptomatic management-your HIV doctor needs to monitor with greater concern if mucousal involvment (eyes, mouth) or evidence for liver inflammation.KH

I have something like liverspots on arms and back

Dec 3, 2008

I started getting darkspots on my arms and then got really sick. I found out that I was HIV postive and after receiving ART (Truvada and reyataz) it dissappeared in about 2 months. I went off medication for about a year and a half and they came back on my arms and I have now started back on (Truvada and kaletra) for about 7 months but I have not seen them dissapear yet, I was sent to a dermatologist who has me using cutivate and elidel for my face and it lightened a little but not much. They thought I had lupus but after biopsy it was “post inflammatory hyperpigmentation” Do you know what this might be? My doctor who is an hiv specialist does not know what it is, that is why they sent me to the dermatologist.

Response from Dr. Henry

Dark spots as you describe are not common with your HIV regimens so tough to ascribe them to one of the drugs. Emtricitabine can occasionally cause dark pigmentation but generally in palms/soles in dark skinned individuals. KH

joint /muscle pain

Dec 3, 2008

I am trying to research causes for pain, I have had an MRI and numerous e-rays and bloodwork to determine cause. I am beginning to wonder if there is a correlation between meds and pain and if so what can be done? I am tired of feeling like I am crazy and having Doctors shrug their shoulders and make stabs in the dark, I would like a launching point to initiate conversation with my medical team. Thanx

Response from Dr. Henry

To comment from the HIV or ART standpoint I would need to know more about your HIV status, which meds you are taking, and other health problems you have. Muscle aching is very common in the general population as well so often tough to pin down relationship with HIV or a particular HIV medication. KH

HIV/TB and Pregnancy

Dec 3, 2008

I am on atripla and in the six month of taking tb treatment am remaining with two months to finish the treatment. I want to have another child/Pregnant but I want to start preparing for the pregnancy from January 2009. How do I go about it with atripla in the blood? Advise on CD 4 count as well what level?

Response from Dr. Henry

I would recommend first finishing your TB therapy and then considering a switch to an alternative HIV regimen that would be safer to use during a pregnancy (often a boosted PI regimen-sometimes nevirapine as an option as well). KH

gynecomastia question

Dec 3, 2008

Dear. Doctor , A few days ago a dermatologist diagnosed me with mild gynecomastia and suggested lipo. ( I asked him to look at my chest) I don;t want lipo and want to know what you might think I might do. History.. Sustiva and or atripla since 2000. Always done well on it.. Free and total testosterone always in the low normal range.. Never have taken testosterone or steroids..

Never had my estrogen levels tested. Never being resistant to any meds, would you consider getting off the atripla bec the sustiva might be causing this.. I’m not totally sure that it is gynecomastia.. Perhaps 20 lbs of wt loss would fix this.. currently 6 ft and 200. I always remember having some fatty chest since my teens.. Thank you for you input.. Luke

Response from Dr. Henry

I don’t have much confidence that switching off efavirenz would clearly reduce the gynecomastia. Similarly I am not sure that providing testosterone supplementation would help either. Weight loss and/or exercise is a good/safe place to start an intervention with observation. KH

Buffalo Hump Removal

Dec 3, 2008

Is there anywhere that I can go in Columbus,Ohio for removal of my buffalo hump? I see that there are many doctors in California,but wanted to have it done locally,if possible?

Response from Dr. Henry

I would discuss with your HIV doctor . If not being seen at Ohio State consider discussing with HIV specialist there if your current HIV doctor unaware of any plastic surgeon in Columbus. May consider dicussing with local AIDS service organization about whether there is a local plastic surgeon who gets high marks from patients. If any reader from Columbus wants to comment please do so. KH

Spring or Viramune

Dec 4, 2008

Thanks for taking the time to answer this question. Ever since i started taking viramune and truvada I’ve been feeling bloated and feeling weird. My liver function tests are normal however my eyes sting and my head has this pain that will not go away. I was originally on stocrin but couldn’t sleep. My doc says he’s not sure if its the viramune as he hasn’t seen anyone wih my symptoms. I’m putting weight on around my midsection FAST but go to gym 3 days a week, have a controlled diet (Most of the time).

My VL has been undetectable for 2 years and i’ve been on viraune for 5 months. The other day i went to him I had what i call an attack. It felt like everything in my body was on overdrive, I was having palpetations my face was burning and i felt like my stomach was going to burst. unfortunately by the time i got there it settled down but i felt sick for the next week. This happens every 6 weeks or so. Is it just spring (I’m in australia) or could it by the viramune or could it be something else? He meantioned switching me to a PI to eliminate viramune to see if it all settles down.

Again thanks for taking the time to answer the question.

Response from Dr. Henry

Intermittent symptoms as you describe would rarely be due directly to the nevirapine. Nevirapine is also a fairly fat friendly drug for the most part so when combined with Truvada not many regimens likely to have less of a fat effect. Stress, panic attacks, thyroid abnormalities and other conditions can cause symptoms like you describe so full evaluation is recommended including history and physical examination. KH

RE:How do i get rid of a bland taste after taking atripla

Dec 4, 2008

Keith,

I have noticed something similar when taking my meds, but I have discovered its not the meds themselves I can taste – as they can make my mouth dry I sometimes wake up with a ‘furry’ coating in my mouth, prob also linked to being a snorer – could it not be contributed to having a simply dry mouth and either food residue sticking or from snoring :)

Response from Dr. Henry

Atripla has rarely caused loss of taste (I have heard that occasionally). Mouth breathing/snoring could decrease taste sensation some. A good ear, nose and throat exam and sleep study might be helpful. KH

HIV SIDE EFFECTS

Dec 4, 2008

HI THERE..I HOPE YOU CAN ANSWER MY QUESTION I AM HIV POS.I AM ON ATRIPLA,DOES HIV CAUSE MUSCLE AND JOINT SEVERE PAINS???PLEASE RESPOND ASAP

THANX,TAMMY

Response from Dr. Henry

HIV infection can cause non-specific symptoms such as fatigue or bone/muscle pain but more often those are due to non-HIV conditions (those symptoms are fairly common in the general population and often tough to diagnose a specific cause). KH

Waisting in the arms

Dec 4, 2008

If you lose body fat in the arm area (small pocket by the elbow between the bicep and tricep)due to waisting, can you ever get it back. And if not is there any cosmetic procedure that can help restore the look.

Response from Dr. Henry

Actual muscle wasting due to HIV infection is not being seen as often with effective use of antiretroviral medications. Loss of fat from arms/legs (peripheral lipoatrophy) is separate from wasting and can be due to HIV or antiretroviral medications (most commonly due to use of thymidine analogues such as stavudine or zidovudine). Fat can return when switched off offending agents though usually slowly. Plastic surgery is not usually done for peripheral extremity fat loss. KH

Viramune side effects??

Nov 9, 2008

Hi,

I recently switched to viramune from stocrin and have a few side effects. However my doctor has said they are not related. I constantly feel full and my eyes are red first thing in the morning. Your thoughts?

Response from Dr. Henry

Viramune generally causes few GI side effects. Fullness is not a common symptom related to viramune though it occasionally is seen. Red eyes can be due to a variety of conditions not related to HIV and HIV drugs. If you are having a rash and/or oral/mouth problems as well I would be concerned that the viramune could be the cause and strongly recommend immediately discussing with your HIV provider.KH
Recent Answers

Flax Seed Oil and Intelence. Feb 18, 2009
Kaletra and Diarrhea Feb 18, 2009
4 year old struggling with meds Feb 18, 2009
HIV and cardiac risks Feb 18, 2009
rash on face Feb 18, 2009
medicine taste recurrence Feb 18, 2009
AVN Feb 18, 2009
When to Switch Meds? Feb 18, 2009
Slow Healing of Wound Feb 18, 2009
Long Term Effect Feb 14, 2009
Fatty leggs Feb 14, 2009
diastasis recti? Feb 14, 2009
Resistance to Atripla Feb 14, 2009
ABOUT HIV Feb 14, 2009
RE:Pos for 17 years with cough Feb 12, 2009
RE:underarm sweating Feb 12, 2009
lipodistrophia reaserch Feb 11, 2009
Smart Lipo Feb 11, 2009
lost time & side effects Feb 10, 2009
switch terapy Feb 10, 2009
otc cold medications Feb 9, 2009
Truvada + Viramune + grapefruit? Feb 9, 2009
mysterious neuropathy of legs Feb 9, 2009
trying to hang in there Feb 8, 2009
hiv/itchy skin Feb 8, 2009
Side effects Feb 8, 2009
Side Effects and CD4 Count Feb 8, 2009
is it ok to take atripla and hydroxycut Feb 6, 2009
Nausia Feb 6, 2009
HIV + Skin Issues Feb 6, 2009
opiates and HIV medication Feb 6, 2009
starting meds Feb 6, 2009
Rapid CD 4 count drop in 5 months Feb 6, 2009
side effect Feb 4, 2009
Diarrhea Feb 4, 2009
Invirase and warts Feb 4, 2009
Dermatology and ADAP and Horomones, “oh my!” Feb 4, 2009
i have a rush all over my body Feb 4, 2009
HCG after steriod cycle am on PEP will it affect the drugs effectiveness? Feb 4, 2009
Muscle Pain After Stopping Atripla Feb 4, 2009
FOLLOW: WBC COUNT Feb 4, 2009
Can a person with HIV get plastic surgery? Feb 4, 2009
anal itching Jan 30, 2009
wbc count Jan 30, 2009
side effects Jan 29, 2009
ANAL FISTULA Jan 28, 2009
Ringing noise in my ears Jan 28, 2009
FUNGAL INFECTION Jan 28, 2009
long term side effects Jan 28, 2009
memory lapse as side effects of atripla Jan 28, 2009
High Latic Acid Levels Jan 28, 2009
side effects Jan 28, 2009
Ongoing MRSA Abscess Jan 25, 2009
putrid body and breath odor and HIV Jan 25, 2009
Side affects with atripila Jan 25, 2009
just to say thanks :) Jan 25, 2009
Meds/side efffects transferred in semen? Jan 25, 2009
china drugs Jan 23, 2009
Depression & Insomnia Jan 23, 2009
fish oil and truvada/sustiva Jan 23, 2009
are my meds making me fat?? Jan 23, 2009
I have Pneumonia – does this effect my life expectancy Jan 23, 2009
How good is this new hiv drug ??? Jan 23, 2009
Need help on meds Jan 23, 2009
facial skin problem Jan 21, 2009
nightmare Jan 21, 2009
big belly/skinny body Jan 21, 2009
breast Jan 21, 2009
Leg Pain Jan 21, 2009
neuropathy? Jan 21, 2009

Answers by Category

15 thoughts on “Side Effects – Letters to The Body.com

  1. I always wanted to do something like this in collaboration with HEAL London. how about this gems?

    would you give me any feedback? By the way, i was diagnosed HTLV III / LAV in the 80′s

    Also taken from the body…

    Increasing CD4s short of meds?
    Apr 8, 2008

    Hi! I’ve been pos for over 2 years and have yet to start treatment. My CD4 is 280 and my VL 5,500.

    Do you know of anything, short of taking antiretrovirals, that would increase my CD4s?!? Thanks!

    Response from Dr. DeJesus

    There are a few agents in research that appears to increase CD4 counts, the question is why do you want more CD4 counts if you are not going to treat the HIV???

    Do you know that HIV attacks and multiply in the CD4 cells? So, having more of those “CD4-HIV factories” may not be a good thing for you, if your HIV is not under control.

    More than a decade ago, that theory was put to test with the use of interlukens, without good results.

    If your CD4 count is dropping treat what is causing that drop the virus!…the CD4 counts will increase then on their own.


    PPPRRRRTTT!!

    DO YOU SUFFER FROM FART? (Flailed AntiRetroviral Therapy)? Thinking of starting FART? Then, you cannot miss this. To save you time, and your life, I have taken the bother to scour a popular web site, which claims to be educational. Please, read on. This is neither joke nor fiction. It is very serious stuff.

    (My) Disclaimer. I am not a doctor. There are others who claim to be as the ones quoted here. I am just a positive person for 21 years, and counting, who has been on both sides of the fence and who had a narrow escape after two 1 ½ days of FART. The rest is up to you.


    Muscle atrophy
    Oct 8, 2008

    I am a forty year old male and positive since 1994. I started taking ARVs in 1999. Cryptococcus Meningitis (1997), CMV Retinitis (1998), Rectal Cancer in situ (2002) and flair up and undergo a permanent colostomy exactly 2 weeks ago – to name a few of my extra ordinary HIV related episodes in the past. My current ( 1 year ) regime antivirals are Truvada and Kaletra with Bactrim since the start of treatment. According to physicians and doctors managing my treatment, this was a difficult route of ARVs to decide upon, because I have tried and used most available (in South Africa) ARVs to date. Previous regimes were stopped because of body rejection and configuring status with genotype testing. My blood counts are best ever. Viral Load = non-detectable and Cd4 = stays round 400. My biggest and most painful side-effect currently is Muscle Atrophy. ALL muscles in my body are affected.

    I have huge difficulty to move and just to do the ordinary daily chores takes loads of effort and pain. Earlier this year I was hospitalized to get Salomed intravenously for four days. For a couple of days I enjoyed life almost painfree. Since that infusion my doctor occasionally injects a steroid, of which I do not have the name. It is supposed to work for 3 weeks, but I experience some relief for only about 4 days. With my most recent operation (Colostomy) I was given an anabolic steroid, which was supposed to have an effect for up to 3 months. Almost 3 weeks later and still no pain relief. My question: Is Muscle Atrophy (caused by side effect of ARVs) permanent and or is there any other solution to this painful phenomenon? Looking forward to get some advice. Theard.


    Response from Dr. Henry

    Muscle atrophy is not a problem associated with your current HIV regimen (Truvada and Kaletra). Nutrition status, hormone status (including testosterone), exercise levels and many other factors can contribute to muscle mass. If you are losing lean body mass despite effective control of HIV and a decent CD4 count then HIV per se not may not be the only contributing factor. Myopathy can be seen in the setting of HIV and its treatment.A muscle biopsy may help determine if there is a mitochondrial or inflammatory component that needs to be addressed. Growth hormone or growth hormone releasing factor can be helpful in some cases of loss os muscle mass in the setting of AIDS though cost and side effects remain major issues. KH

    MY RESPONSE
    Don’t be fobbed off. On the one hand, the doctor sees no problem with your regime. On the other, he mentions a few things that can contribute to muscle loss including mitochondrial damage through treatment! Is it clear enough?

    What you should be doing is looking after your cancer, which I am almost certain it is treatment induced. I was on that precise regime for 2 ½ days and the effects were demolishing. I think you are lucky to be alive because you not only are dealing with the standard treatment but also with the steroid, which, as everybody knows, are immunosuppressive as well. When I was on that, I had to leave to gravity the simplest biological of functions such as urinating. Do I say more? Just say no drugs useful only to funeral dirctors. Take care.

    purulent rash
    Oct 3, 2008
    I have been on Kaetra/Truvada x 2 years. I have noticed the development of a small putulent bumpd everywhere on my body. What might this be?


    Response from Dr. Henry

    A range of skin problem can flare up after starting effective HIV treatment (sometimes related to immune reconstitution). The possible explanation depends on a number of factors including what your CD4 count was when starting treatment, history of other skin conditions, and what other medications and medical problems a person has in their medical history. An examination of the bumps and culture of any fluid/material can help sort out the possible cause as well. Folliculitis and seborrhea for example are common skin conditions in HIV+ persons that can flare up when starting effective treatment. KH

    [Reply]

  2. I lost count of how many times the medical response to complaints was: “(your symptom) is not associated with (the drugs you are taking),” or some similarly dismissive answer.
    There are a lot of patients here complaining of symptoms after they start taking a prescribed drug or drug combination, but their issues are casually dismissed as either relevant or not related to treatment.
    Since the drug trials, thebody.com, and indeed the experts answering the questions are all funded by the pharmaceutical companies one has every reason to suspect that these reports are only the tip of the iceberg.

    [Reply]

  3. I have been taking a combination of purbac, lamzid and efeverenz and it was fine initially, but after a week, I started having severe stomach problems including bloating, diarrhoea and then suddenly, I had the feeling of constipation where I would not be able to go for 2 days. I was simply moving back and forth between these. I was forced to stop taking the meds and within a week I was better. I then restarted again, and same problem reoccured and eventually I could not take it anymore.

    My doctor referred me to an AIDS specialist who told me to stop the purbac immediately and continue with the other two. No change and simply have stopped taking the meds because the stomach alone will kill me before the virus does its work.

    He has now changed the prescription to stockrin (efeverenz) and truvada. Have not take them yet, but will there be a problem due to the fact that i had stopped taking the meds before? My new doctor seems less concerned. He believes that as long as I stopped all the meds at the same time, I am just fine. Will do tests in May, though I would want to do them ASAP

    [Reply]

  4. i have been on stocrin for almost two years, i have just fallen pregnant,i have been told that my unborn baby might have some genetic problems is this true ,and how do i stop this from happening, termination is a last option. I love even though he/she is not yet born.Please help ASAP

    [Reply]

  5. I am 34 years old and have been HIV positive for almost 15 years now. I have been on many HIV antiviral medications (AZT, D4T, Viracept,3TC, & Atripla) and combinations and at this point have become resistant to many of the HIV drugs. Currently I have 100 t cells and was prescribed in November 2009 to take Norvir, Prezista, Truvada, and Isentress. Within a few days after taking this combnation, I had extreme heartburn and felt anxious because of this side effect. After suffering extreme fatigue, I was later taken off of this medication (01/10) and precribed to take Reyataz, Epzicom, Mepron, and Isentress(which I recently read increases Acidosis which is a concern). I have had little side effects from this combination. Due to a fungus on my toe nail, I am also taking Sporanox and for my seasonal allergies, Zyrtec. Are there any known short term or long term side effects from these HIV medications? Will these HIV medications interact adversly with the other medications in my regimen?

    [Reply]

  6. Hi Dr. Henry-

    38yo diagnosed poz 2 months ago (150,000 VL, 250 TC). I started Atripla 1 month ago with no problem. Diet is healthy/average.
    Couple weeks later I developed MRSA abscess near ear; healing with frequent ‘wicking’ and Tetracycline for 2 weeks now, yet have developed a mild, non-itchy rash on arms and upper body. Took 1 probiotic pill today and notice a slight inflammation. Shall I discontinue probiotic and start something like Allegra to alleviate rash until I’m done with Tetracycline?

    Also, for a year+ I had treated an infrequent facial dermatitis with ProTopic on my cheeks only. The dermatitis has left my cheeks for months now and seems to have resurfaced on my earlobes. The ProTopic does not seem to work and it is not going away. Could it be Shingles? It does not hurt, it just seems to be flaky and of course I touch it which breaks the skin causing increased surface area irritation. There was mild relief when I started recent cycle of meds. This all seems to be an Ear/Nose/Head thing (breathing problems due to broken nose and past drug use). Thoughts on this please? I really appreciate your time.

    [Reply]

  7. Good day doc

    I was sleeping with an HIV + woman for 2 weeks when I found out she was + when we tested I started taking lamzid immediately will it help me.?

    [Reply]

  8. Hi
    I have been on Lamivudine + Efavirence + Tenofovir + bactrim + multivitamin I was on a CD4 of 140 when i started, for 11months now my last CD4 is 381 and was below 40.I have been having aalergic rash on mychest ,upper back and severely on my face it is very itchy,It comes in my eyes and eye lid and they itch alot.I have bben told by my dr to use aqoues cream as face wash and given some allergex and phenegan but they dont seem to work.It goes down for a day or two then comes back with vengence.I have been given mylocort but does stop the itch.What do i do Dr please help me.

    [Reply]

    Sindy Reply:

    Hi, I’m also taking the same medication as u’rs and have the same problem my face is very itchy at night and its swells afta I scratch it if u happeb to get help pls help me also

    [Reply]

  9. Hi, I’ve been diagnosed with HIV for 4 months now, my CDA count is 301 and my viral load is high. I’m currently taking Norvir, Truvada & Reyaraz. The white part of my eyes are extremely yellow since starting the meds and no longer take regualar bowl movements. What can I do? Can I do a kidney, colon & liver cleanse while on the medication to help with the frequent irregular bowl movements and the yellowing in the eye?

    [Reply]

  10. Hi Dr

    I have been using combivir & Aluvia for 4 years I am so big on the upper body where on the lower body the muscles ar wasting. My legs are so small and my hips gone & I would luv to ve them back should I change meds & which one’s

    [Reply]

  11. Hi!!
    I just discover that I am HIV positive three momth ago, and my CD4 count was only 7,I start using Atripla but on the second week of using it I suffer from brain inflamation which cause paralisis on my left hand and leg and also speach problem (some time I speak, some time I want to speak but the word doesnt come out) my doc gave me some medication and said I will be ok when my CD4 rise. but one month of using Atripla the CD4 Count is still 7, Doc change the medicine and I start using Aluvia for three weeks now and my CD4 count rise to 17. But other problem arise with my Eye, it clinically proved that I suffer from POSTERIOR UVEITIS, and I have been given Clindamycin 450mg TDS *2/52. And other medicine, I am so afraid that because of this huge dose of clindamycin my Cd4 will not rise again and I am afraid also that I might become blind for good.
    Tell me Doctor will my CD4 count rise? how long will it take to rise to atleast 100? And does this HIV medication the one which cause this illines because before starting taking them I was ok. Will I be able to talk frequently again? and about my eye will they go back to normal again?

    [Reply]

  12. I am M, 64 yr old. I was diagnosed HIV+ in 94. Always asymptomatic. Have been on different drug combos, the longest regimen being Viread/Trizivir for years. Then late 2010 a new doctor switched me to Atripla, (for the convenience of one-per-day?) and I became resistant ..was switched to Norvir-Reyataz-Truvada combo July 2011 which I continue today. My CD4 in the range of 700-800+, 45% and virus undectable.

    But now labs for first time show a higher than normal red blood cell count (19 I think?)… My current doc, an infectious disease specialist, appears to be new to HIV-related exxperience. At first he attributed the rise in red blood cells to my smoking, then upon learning I have been on testosterone injections for years, suspected that as cause. (I also until 2 months ago had been taking oxandrolone on occasion to alleviate liposdystropy… face, arms, legs, buttox… weight had fallen from 138 to 124 prior, then gained back to 135, but now losing again after stopping testosterone/oxandrolone.) He sent me to hematolgist who is currently monitoring my blood cell count until this Feb. to see if it is reduced after discontinuing testosterone therapy.

    I should say I lost 2 longtime primary care docs since 94 thru no fault of my own and my med records have not followed me to my current residence in a small city and this current infectious disease doc. For first time in my HIV experience I am scared and insecure about my care … financially I am unable to travel to a larger city where I might find more experienced practicioner.

    I’m also on cholesterol/pressure lowering meds (lipitor + zetia ea 10 mg, & lisinopril 10 mg) antidepressant & anxiety med (zocor 100mg, ativan 1 mg 3x). I had a mild stroke in 2007, which also frames this doc’s referral to hematologist.

    This doc doesnt view my health issues in totality, instead says he *only* an HIV *specialist*. He wanted to refer to me to an associate for primary care, but she said in advance (never having seen me) she won’t prescribe ativan, which makes me rather dubious.

    Bottom line: can you help me? My red cell count started to rise only after starting reyataz/norvir/truvada… is that related? Also the lypodystrophy is so worrisome to me, and anxiety is a big concern and can be crippling without meds.

    [Reply]

  13. I want to know if tetracycline can disturb arv in my system

    [Reply]

    webmaster Reply:

    I’d say the ARVs can hurt your system on their own – why not take some time to read more about them, and HIV tests? :) Keep researching.

    [Reply]

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