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I was wondering if there was any significant information with regards to lipodystrophy? By significant I am referring to either anecdotal or clinical responses that have had some positive impact in dealing with this side effect? Any direction to web sites that might discuss this topic would also be appreciated. Thank you. (August,1998)
A: Charlie Smigelski, RD responds:
Here is a hand-out I've prepared for the Fenway Community Health Center which deals with your question:
TAKE CARE OF YOUR LIVER WHEN ON PROTEASE INHIBITORS
Your liver is working very hard when it has to process so many anti-HIV drugs, especially the ones like ritonavir and nelfinavir: protease inhibitors. So many people are experiencing changes in their blood fats, like higher cholesterol and triglycerides, and some, especially women, have changes in their body fat, like thin arms and legs, with bigger stomachs and breasts. You have probably heard about "protease paunch" too.
Medical people don't quite know the cause, and if the drug companies know, they are not letting on. It's clear that the liver is struggling though, so take care of it. Also, sex hormones, especially testosterone, effect fat metabolism, so get your total and free testosterone levels checked at least twice a year.
There are a number of supplements that every HIV+ person should take, to help supply the immune system with needed materials and keep oxidative stress levels low in their body:
1. Vitamin C: Take 1 to 2 grams a day.
2. Vitamin E: Take 400 to 800 i.u. a day as "mixed tocopherols"
3. B Complex vitamins: Take a Complex 25 or a Complex 50 to get enough.
4. Selenium: Take 200 micrograms/day of selenomethionine.
5. Zinc: Take 30 mg a day.
6. N-Acetyl Cysteine: Take 1 to 2 grams a day.
7. L-Glutamine: Take 5 to 10 grams a day.
8. Essential fatty acids Take 1 gm each of Fish oil and Evening Primrose oil.
9. Beta carotene: Eat this daily, in carrots, spinach, winter squash, etc. You can find an antioxidant multivitamin that contains many of these items all blended together. Jarrow makes one, Trader Joe's does too.
Some other supplesments also important to the liver, and to fat metabolism are:
10. Alpha Lipoic Acid: Take 200-300mg a day.
11. L-Carnitine: Take 1 to 2 grams a day.
12. Milk thistle: Take dose as per bottle. Use only if your liver enzymes are up. It is unclear if milk thistle helps the liver clear HIV drugs out of your body faster.
Yup, more pills, but hopefully saving yourself from an out of control body, and heart disease; or from having to stop your anti-HIV meds, is worth the price.
Take it easy on alcoholic beverages too. Alcohol is toxic (damaging) to liver cells.
Many people are thinking of avoiding PI therapy and using a combo of nucleosides and NNRTI's instead as first therapy. A good consideration, especially for women; their bodies seem to be particularly affected by these drugs.
A: Chester Myers, PhD, MS responds:
Since the issue you have raised may need one to "pull out all stops" in trying to slow down or reverse, a couple other things may be of interest. So far, however, these that I mention have not been specifically examined in the case of HIV/PI related lipodystrophy (LD).
1) Some cases of LD have some similarities with Type II diabetes (Non-Insulin Dependent Diabetes Mellitus, or NIDDM). Current information indicates that increased levels of insulin and insulin insensitivity are often part of this. In one study for Type II diabetes, "moderate" exercise was found to very significantly improve insulin sensitivity. In another study, chromium, up to 1000 micrograms/day, was moderately helpful. I think exercise makes good sense in any case, provided you are able, and have a good diet that includes supplementation as noted by Charlie.
2) NIDDM may be accompanied with increased excretion of zinc, and (maybe)magnesium - levels tend to be low in absence of supplementation in HIV disease, so not a good thing!! Serum magnesium levels should be checked by your doctor, in any case - a couple times a year should be okay. Watch for problems in taste perception which could signal low zinc. Your doctor can also measure your blood zinc levels, but the numbers are not easy to interpret. It would be worthwhile to do zinc evaluations every few months to see if there is a trend downwards. Both magnesium and zinc are important for maintaining lean body mass, and deficiencies of either would be expected to make insulin insensitivity even worse - a sort of vicious cycle.
Supplements of magnesium up to about 600 mg/day should not cause loose bowels, but watch for this in any case. Zinc will be in your multivitamin. Maybe you'll need to consider more - say another 25-50 mg per day.
One website you may find informative is www.medibolics.com and click on the left panel for "Protease Inhibitors and Pot Belly". Also, at www.aids98.ch, there are reviews from the Geneva conference by Dr Kotler - no recommendations, but gives some of the 'geography' for LD.
For more discussions, re lipodystrophy, that came out of Geneva, check out hivinsite.ucsf.edu which has a section entitled "Reports back from the 12th World AIDS Conference in Geneva". Click on this to get a list of links to reviews. I think you may be especially interested in:
1) The Body (reviews/comments by Dr AT Pavia);
2) Medscape (section on Complications of Protease Inhibitors by Drs CJ Fichtenbaum & W Valenti);
3) Johns Hopkins - "Conference News at a Glance" - see especially
section on "Lypodystrophy, Lipid Changes and Diabetes Ascribed to PIs", but also the other brief reviews;
4)Clinical Care (see reviews by DP Kotler, which you may already have accessed via www.aids98.ch).
Hope you find these informative - I think some light at the end of yet another tunnel is glimmering.
Q#2: Buffalo Hump
I have been on Crixivan for 2+ years and in the beginning I noticed the smaller limbs and fat trunk but now I am getting the buffalo hump. It is very painful and it can increase my fatigue. I have been undetectable (below 50) for those two years and my cd4 count is 485 which is great. I wanted to know how I can get rid of or minimize the pain that comes with the buffalo hump. My doctor says that even if I stop taking my pills, that won't guarantee that I'll go back to "before the hump". I hope you have some suggestions. They will be deaply appreciated. Thanks. (June, 1999)
A: Charlie Smigelski, RD responds:
I have a three-pronged approach to body fat changes associated with Protease Inhibitors:
1. Diet: You must essentially eat like a diabetic. That is.... controlled carbohydrates. There is more evidence that a lower carbohydrate, higher protein, decent amount of fat will reduce upper body fat, while low calorie, yet still higher carb diet, takes weight off just the leg and butt area. So.... a 40-30-30 carbs-protein-fat scheme is a good idea for softening the Buffalo hump. Find an HIV-savvy dietitian or a SCAN (Sports and Cardiovascular Nutritionist) to map out this plan. The ADA (American Dietetic Association) has a hot line (800 366-1655) where you can get referrals to dietitians in your area.
2. Redox Load must also be lowered. The accumulation of stray electrons dammages mitochondrial membranes and DNA in everyone, but appears to be worse in HIV/AIDS people on HAART. We have listings for comprehensive antioxidant supplementation: NAC, glutamine, selenium, vit C, vit E, and even a month of Co- Enzyme Q10 would be a good idea. (See the recommendations in Question #1 above.)
3. Essential fats are a must as well as carnitine. 2-3 grams a day of Primrose Oil, Fish Oils, and L-Carnitine for a few months are also recommended.
4. A medical check of testosterone and DHEA levels is also required. Supplementation may be necessary here too.
The pain of the hump will go down as it is burned up for fuel. You could go on a diet that provides 15 calories for each pound of ideal body weight.
Q#3: Partial lipodystrophy? (And the Pill.)
Dear Staff, for many years I have been trying to find out information about partial lipodystrophy. Can you help by referring me to some substantial sources of information? Also can you tell me how the contraceptive pill affects this disorder? Many thanks from a partial lipodystrpohy sufferer. (December, 1998)
A: Ken Stringer, Website Administrator, responds:
Being just a pixel-pusher myself, and not a nutritional or HIV expert, I wasn't familiar with the term "partial lipodystrophy," so I asked the Virtual Faculty to address that distinction (if there is one) in their answers. Also, please see the responses to Question #2 above for the basics on lipodystrophy. You'll notice there are some references there to other useful websites on the topic. Indeed, most of the major HIV/AIDS websites have information on lipodystrophy. You'll find links to many of them on Jennifer's Crazy Quilt of Links page.
A: Charlie Smigelski, RD responds:
Lipodystrophy is currently a catch-all title under which a number of problems have been listed, including blood lipid changes, body fat changes, like increased trunkal fat accumulation and thinning arms and legs, or fat stomach or buffalo hump. The ACTG (AIDS Clinical Trials Group) is nearing their official definition, and that will be released soon.
In the meantime, I am not aware of a descriptor "partial lipodystrophy". I would guess that it is just "mild" symptoms, such as slight development of belly fat, or modest increases in blood fat and cholesterol.
The medical (doctor) community is still struggling over what might cause lipodystrophy. Protease inhibitor therapy has certainly increased the incidence of lipid problems, but in some cases just two drug combos had caused it as well. The activist community has some very strong opinions about the problem coming from hormonal and nutritional deficiencies that are not given adequate attention. I feel that essential fatty acid (EFA) deficiency has a strong role to play, and likely some mineral deficiencies, especially intracellular magnesium. Low EFA's have historically provoked high triglycerides (blood fats) and modest elevations in cholesterol and a drop in HDL. (See the work of Siguel, formerly at Tufts Nutrition Research Center on this). EFA deficiency also increases free fatty acid levels, which can provoke insulin resistance, the possible start of blood sugar problems. Low magnesium levels also cause insulin resistance.
Lower levels of testosterone have another role to play in deranged fuel metabolism. Steroid action in the liver is critical. I can note that lipodystrophy seems to occur in my two drug patients who over-consume alcohol sometimes, and when they reduce their alcohol intake, their body fat straightens out. The PowerTx people have a wonderful website (www.medibolics.com) that suggests careful anabolic steroid supplements to remedy lipodystrophy.
I still advocate 3 grams/day fish oils (DHA/EPA) supplements, 2 grams/day Evening Primrose Oil supplements, and 1-2 grams a day L-carnitine to prevent lipodystrophy, or limit its progression. Also consume a low sugar, high protein, modest fat diet. (Olive oil as the only (applied) fat whenever possible).
These supplements are in addition to the usual antioxidants we recommend, like 1 gram/day vit C, 800 iu vit E, 400 mg magnesium, 200 mcg selenium, 1-2 grams a day N-acetylcysteine, 5 grams a day glutamine and beta carotene veggies every day. (Plus a B-complex 25 pill a day too).
Oh, I almost forgot.... I would expect Oral Contraceptives to make the risk of lipodystrophy higher. Estrogen is an insulin antagonist, so it raises insulin levels, and makes it more likely for a person to change starch to fat sometimes. Many women gain weight on the Pill, for this reason.
A: Chester Myers, PhD, MS responds:
The definition of lipodystrophy can include a variety of symptoms, mainly subcutaneous (close to the skin) peripheral (mainly arms and legs) fat loss, and abdominal (cavity near the stomach and liver) obesity (fat collection). But there may be other symptoms such as moon face, a buffalo hump (fat accumulation on back at base of neck) etc. I'm not aware of a commonly accepted definition for either "lipodystrophy" or "partial lipodystrophy", but the above implies reasonable interpretations.
The bottom line is that lipodystrophy is an unusual distribution of the body's fat. This distribution is largely controlled by steroidal hormones which the body makes from cholesterol via reactions that are controlled by (cytochrome P450 and related) enzymes of the adrenal glands that are located over the kidneys. These hormones include at least aldosterone, cortisol, testosterone and estrogen. Changing the activities or proportions of these enzymes can be expected to result in changes in fat distribution. Birth control pills that directly change the proportions of the steroidal hormones can also cause fat distribution changes. Compounds that interfere with the P450 enzymes may change fat distribution, since this would also change the proportions of the various steroidal hormones. Other drugs and some food components are among compounds that may interfere with these enzymes.
There is a large variation in the proportion of these hormones amongst different people, so use of a particular drug may cause a problem for some but not others. If the symptoms coincide with chronic use of a particular contraceptive, then it might be from a combination of the pill and whatever sensitivities exist in the particular person. But will stopping the pill reverse the effect?? One would think that this could happen, but it might take several months to have an observable result.
An endocrinologist and a pharmacologist could be valuable consultants in combination with a knowledgeable primary care physician.
Q#4: Blood Test for Lipodystrophy?I have clear signs of lipodystrophy, but my doctor says that a blood test was done to confirm the diagnosis, which was negative. I have never heard of a blood test specifically for lipodystrophy. Am I being lied to? Does lipodystrophy ALWAYS show up in cholesterol and blood sugar tests?" (October, 2000)
A: Donna Tinnerello, MS, RD, CD/N responds:
I have definitely seen body fat changes with normal lipids (fats). But everyone in the field of HIV is still working on clarifying this syndrome. After almost four years there are still more questions than answers. So it is not uncommon for there to be some confusion about this, and not only among people living with HIV, but among health professionals as well.
Lipodystrophy, in the true sense of the word, is not measured by a blood test to my knowledge. High cholesterol, triglycerides (more blood fats) and elevated blood sugar are often features of this syndrome. And it is these features that can be measured in blood tests.
But lipodystrophy per se is defined by changes in outward appearance, and it can take on many "shapes." These shapes -- that is, fat deposition in the truncal area like the belly, a buffalo hump (fat in the back of the neck), enlarged fatty breasts in women, thinning of extremities, and sometimes lumps of fat under the skin in other parts of the body as well -- are measured by the eye, not by blood tests. They're assessed by what one sees in the mirror and by repeated tape measurements. Doctors can also tell if the increase in truncal size is water or fat upon physical examination.
So for clarity, let's call the changes that can be measured in the blood metabolic abnormalities -- high triglycerides, high cholesterol, and glucose abnormalities including diabetes. (Apparently, your tests came back normal.) And let's call the changes in body shape the true definition of lipodystrophy in the strictest sense. Often, but not always, the metabolic abnormalities accompany the body changes. But in "fat wasting", for example -- the loss of fat in the face, arms and legs -- these changes are not measured by a blood test.
A: Diana Peabody, RD responds:
Just to put in my two cents: A person can get the metabolic problems OR the body shape changes OR both. Some people with HIV, taking the same medications, don't get any form of lipodystrophy while others do. So far there is no way to predict who will get what. Everyone should at least have regular fasting bloodwork (cholesterol, triglycerides and blood sugars) to monitor, though, as they are a common marker.
