CATIE booklet on side effects

CATIE, the venerable and sharp Canadian AIDS Treatment Information Exchange, has once again provided a terrific manual entitled A Practical Guide to HIV Drug Side Effects (link – http://www.catie.ca/en/practical-guides/hiv-drug-side-effects ).

The booklet, available as a pdf by clicking the link above, covers a wide array of topics. The language is clear and the layout is easy to follow. They provide information on mainstream medical and “alternative” or natural remedies to manage what can be debilitating side effects of HIV therapy.

Topics covered include the range found in the table of contents:

This Guide Is One Tool to Healthy Living
4 Dealing with Side Effects
8 My Health Map
10 Body Weight and Body Shape Changes
14 Diarrhea, Gas and bloating
17 Emotional wellness
21 Fatigue
24 Headaches
27 Menstrual changes
31 Mouth and throat problems
35 Muscle aches and pains
38 Nausea, vomiting and appetite loss
42 Nerve pain and numbness
44 Rash and other problems of the skin,
hair and nails
47 Sexual difficulties
49 Sleep problems
53 Less common side effects: lactic acidosis,
pancreatitis and abacavir hypersensitivity
55 Appendix: Vitamin B12 and Vitamin D
57 More Resources

Nelson Vergel: “Survivor Wisdom”

A Talk by Nelson Vergel: “Survivor Wisdom: Advances in Managing Side Effects, Living Well, and Aging with HIV” – New York City, November 9, 2010

How could you not be impressed by the schedule HIV treatment activist Nelson Vergel keeps? A few days before he arrived in New York to share his “Survivor Wisdom” with New York Buyers’ Club members and guests, he was an invited participant at the 12th International Workshop on Adverse Drug Reactions and Co-morbidities in HIV in London. The founder and moderator of the “pozhealth” group on Yahoo—the largest online discussion group for HIV issues–Nelson also finds time to answer questions on a forum hosted by thebody.com. In addition, he serves as a community member of the federal government’s Department of Health and Human Services HIV treatment guidelines advisory board. And did we mention that he’s the author of a new book, “Testosterone: A Man’s Guide,” especially useful for people with HIV who are considering testosterone therapy to address fatigue and other problems?

As you might expect, Nelson also covered a lot of territory in his NYBC talk, which was co-hosted by the City University of New York’s Graduate Center. He briefly updated the audience on new treatments and guidelines, then reviewed the exceptional case of the HIV+ “Berlin patient,” whose apparent cure following a bone marrow transplant has opened up, at least tentatively, some new lines of research about curing HIV.

Most of Nelson’s talk, however, dealt with familiar issues in managing HIV symptoms and medication side effects: cardiovascular health challenges, lipoatrophy (facial wasting especially) and body fat accumulation (lipohypertrophy), aging with strong bones, fighting off fatigue, minimizing the risk of anal cancer.

Amid this discussion of symptoms and side effects, Nelson spent time on the topic of supplements. His first point, which NYBC would certainly agree with, is that a lot of good evidence has accumulated about the benefit of multivitamin supplementation, and a multivitamin plus antioxidant combination, for people with HIV. These “micronutrients,” as they’re called in the scientific literature, can enhance survival, delay progression of disease in people not yet on HIV meds, and increase CD4 counts in people taking the meds. We have to admit we were pleased when Nelson also took a moment to praise NYBC (and especially our Treatment Director George Carter) for making available an inexpensive, “close equivalent” of the multivitamin/ antioxidant combination that was the subject of Dr. Jon Kaiser’s well-known research and that led to the development and marketing of K-PAX. New York State residents, as Nelson pointed out, have access to many such supplements through formularies. But for residents of other states, this half-price version of the multivitamin/antioxidant combination (MAC-Pack or Opti-MAC-Pack) can provide welcome relief in the budgetary department.

Our speaker then ran through a list of about a dozen supplements that have reasonably good evidence to support their use by people with HIV. He chose to focus more closely, however, on just a few:

Niacin. Despite “flushing” that makes it difficult for some to use, niacin can be very effective in bringing up levels of HDL (“good”) cholesterol in people with HIV. Since cholesterol control is a major long-term health issue for many people on HIV meds, and since recent research suggests that raising HDL cholesterol levels may be an extremely important factor in reducing cardiovascular risk, niacin may be a top choice for many. (Fish oils/omega-3 fatty acids, plant sterols, pantethine, carnitine, and CoQ10 are other supplements that NYBC and many others put in the category of “supports cardiovascular health.”)

Vitamin D. Seems that, even at the London conference Nelson had just attended, the “sunshine vitamin” was a hot topic. Partly that’s because people with HIV have recently been found to have a high prevalence of Vitamin D deficiency, and then because Vitamin D, calcium and other mineral supplementation is a logical approach to addressing long-term challenges to bone health in people taking HIV meds. (Look on the NYBC blog for a whole host of other recent studies about Vitamin D’s potential benefits, from reducing cardiovascular risk to cancer prevention—even as a way of warding off colds and flu.)

Carnitine. This is a supplement, Nelson told the audience, that he’s taken for many years. Reported/perceived benefits: to improve fatigue, lipids, brain function and neuropathy. (NYBC Treatment Director George Carter put in that “acetyl-carnitine”—a form of the supplement that crosses the blood/brain barrier–has shown the most promise for dealing with neuropathy.)

Probiotics. The vulnerability of the gut in HIV infection, and the well-documented problems people with HIV experience in absorbing nutrients, make probiotics a very helpful class of supplements for long-term health maintenance. (Probiotics, good or “friendly” bacteria residing in the gut, are available in a variety of products, from yogurt to supplements. There’s quite a bit of research about the effectiveness of different varieties, and note as well that there are some newer formats that don’t require refrigeration.)

Above and beyond the treatment issues involving supplements, meds, and other strategies, Nelson referred several times to areas where there’s a need for advocacy. He mentioned the cure project, for one, but also a national watch list to help people follow and respond to the devastation created by recent funding cuts and the resultant waiting lists in the ADAP programs of many states, such as Florida.

All in all, NYBC members and guests would doubtless agree: a very thought-provoking presentation, with much helpful information to take away. For more on these and other issues, be sure to check out the NYBC website at:

http://www.newyorkbuyersclub.org/

[A version of this article also appears in NYBC’s free e-newsletter, THE SUPPLEMENT, along with additional reporting on a new Mayo Clinic guide to supplements, and a look at the current state of regulation and research on supplements in the US.]

Symptoms common, often ignored by docs

A recent report underscored the myriad symptoms and problems facing significant numbers of people living with HIV. The study involved 751 patients enrolled in the Veterans Aging Cohort Study, undertaken between 1999 and 2000. Commonly reported symptoms included fatigue (71%), difficulty sleeping, depression, muscle aches and diarrhea (each reported by 60% of the respondents). Over 50% of patients reported headache, difficulty remembering, tingling hands or feet (neuropathy), weight loss and body shape changes.

The worry is that some may be associated with meds and this may reduce adherence to drug schedules. This can lead to resistance, etc. Which is why we at NYBC take very seriously the methods and means that may be available to manage some of these side effects. Diarrhea has been managed in studies that investigated agents like calcium and glutamine. Acetylcarnitine has some benefit for nuke-related neuropathy. You can review our literature on what we know (and need to learn more) about such interventions along with the different symptoms and side effects people experience and how they can be managed.

The study included about 54% African American. The study noted that healthcare providers often don’t recognize these as important symptoms. Perhaps this is why there is a strong racist element within American health care, one that arises out of blindness and ignorance as much as any overt hostility.

The second aspect of such care is that many people, of every ethnicity, are economically impoverished. So how can many people access sometimes costly, nearly always out-of-pocket agents like acetylcarnitine? NYBC is working on ways to make this possible, though we will need additional help to assure such access. State-run programs like ADAP and Medicaid can help in some states–but many of these programs are facing cuts due to tight budgets. Tight budgets induced by banks getting a socialized bailout for their malfeasance while Americans suffer?

So political activism will remain a key component in any comprehensive effort to provide care and treatment that includes the types of agents NYBC investigates and makes available. Ongoing research into dietary supplements and the ways in which they may improve health outcomes, enhance adherence to medications, reduce side effects and lower the burden of public costs by reducing morbidity and mortality are keenly needed.

NEW! Managing and Preventing HIV Med Side-Effects

To mark its fifth anniversary, the New York Buyers’ Club has prepared a special edition of SUPPLEMENT. In it you will find a concise Guide to managing and preventing HIV medication side effects with supplements and other complementary and alternative therapies.

This is an invaluable introduction to how nutritional supplements can be used to counter those side effects that can make life miserable–or even disrupt treatment adherence–in people taking antiretroviral medications for HIV.

Read about approaches to dealing with diarrhea, nausea, heart health issues, diabetes, insomnia, fatigue, liver stress, lipodystrophy, anxiety and depression.

This FREE Guide is available online at:

http://newyorkbuyersclub.org/

On the NYBC website you can also SUBSCRIBE to the nonprofit co-op’s quarterly FREE newsletter, THE SUPPLEMENT, which continues to offer a unique perspective on current evidence-based use of supplements for chronic conditions including cardiovascular disease, diabetes/insulin resistance, hepatitis and other liver conditions, anxiety/depression, osteoarthritis, cognitive and neurorological issues, and gastrointestinal dysfunction.

SUPPLEMENTS AND OTHER SMART STRATEGIES FOR LONGER LIVING – A panel discussion on traditional, complementary and alternative treatments for HIV

We reprint below our report on this June 2009 forum, which brought together a range of views on managing HIV:

SUPPLEMENTS AND OTHER SMART STRATEGIES FOR LONGER LIVING was the title of a panel discussion on traditional, complementary and alternative therapies for HIV presented on June 25, 2009 by the New York Buyers’ Club in celebration of its fifth anniversary. The event brought together experts whose knowledge spans East and West, and whose experience ranges from community organizing and scientific writing, to clinical research and the practice of medicine, whether as an M.D. or as a licensed acupuncturist and specialist in Chinese herbalism.

NYBC was especially proud to host our Guest of Honor, Sunil Pant, the first openly gay Member of Parliament in Nepal, and Founder/Director of the HIV-support organization the Blue Diamond Society, which was recognized by the International Gay and Lesbian Human Rights Commission in 2007 as “one of the most effective human rights groups in the world.” At the start of the panel discussion, our Guest of Honor gave a moving account of the work he and his organization have done over the last decade in securing rights for sexual minorities in Nepal, and in fighting for decent treatment of Nepalis with HIV/AIDS. Sunil also took a moment to recall the many years he has known and worked with our own George Carter, who has directed NYBC efforts to provide supplements and other aid to BDS.

We also felt privileged to hear from our other panelists: Dr. Paul Bellman, a NYC physician who has been treating people with HIV/AIDS since the start of the epidemic; Tim Horn, President and Editor of AIDSmeds.com; Alex Brameier, a licensed acupuncturist and herbalist; and George Carter, Director of the Foundation for Integrative AIDS Research. It’s true that the first two of these panelists are in the mainstream of AIDS treatment practice, by which we only mean to say that their main area of expertise is antiretroviral pharmaceuticals. Yet Dr. Bellman also spoke of the usefulness of several supplements that NYBC and its predecessor DAAIR have long recommended: alpha lipoic acid, carnitine, and CoQ10. Tim Horn, whose website focuses largely on pharmaceutical treatments, nevertheless also acknowledged that the “holistic” approach to long-term health for people with HIV makes a lot of sense. And he went on to say that he recognizes that a whole range of “therapies” (including even diet and exercise) may be needed to address worrisome trends in heart and lung disease among people with HIV who are taking ARVs.

Alex Brameier, the Lic. Ac. on our panel, engaged our audience with an impromptu survey on how people view their acupuncture treatments. She then discussed some of the conditions that lend themselves to acupuncture, based on clinical experience: pain relief, stress reduction, neurological and musculoskeletal disorders, to name a few. Very useful as well was the contrast she drew between acupuncture as practiced in China and Japan (where treatment may be daily or every other day), and the West, where time and financial constraints often dictate otherwise. Her tips on how to get the best out of acupuncture and how acupuncture and herbs can work together were also very valuable.

Last but not least among our contributors was George Carter, who’s had two decades of experience with supplements, from clinical research to acting as NYBC Treatment Director. George, as all who know him can attest, is nothing if not thorough, and for this event he prepared a “Short Primer on Side Effects,” a compact but comprehensive review of HIV medication side effects, ranging from malabsorption/diarrhea//nausea, to lipid abnormalities (of concern for cardiovascular health), to fatigue and insomnia, to insulin resistance/diabetes, to liver damage, to bone issues, to peripheral neuropathy. We hope to produce this super-useful handout as a handy pocket guide in the near future, so stay tuned.

An inspirational, lively, and (if we do say so ourselves) immensely informative event. If you were there, thanks for coming! And if not–we certainly hope to see you at the next one.

Reprinted from the SUMMER 2009 SUPPLEMENT: Newsletter of the New York Buyers’ Club, which can be read in its entirety at

http://newyorkbuyersclub.org/supplement/index.html

In addition to the piece above, this issue contains a report on how research on diet and nutrition has led to new knowledge about supplements (“Are You Ready to Join the Food Revolution?”), and a short review on HIV and cognitive impairment.

Note: Email subscriptions to THE SUPPLEMENT are free to NYBC members.

Organic hemp protein powder from Jarrow

Studies of hemp protein in mice conducted in China showed improvements in energy, less fatigue and some immune system modulation. This included increases in CD4 numbers in the spleen (though of course whether this would have any relevance to people living with HIV is unknown; see Wei Sheng Yan Jiu. 2008 Mar;37(2):175-178). Lactic acid levels were also seen to decrease. A rat study showed a significant decrease in LDL (the so-called bad cholesterol) and an increase in the good cholesterol, HDL, over a 20-day period. Again, whether this is relevant to humans or what dosage daily would be needed to achieve this is unclear.

In any event, this products offers another alternative for a good protein source with a favorable amino acid profile. It has an innocuous flavor and is great in juice! If you are able to assess your energy level or start this around the time you get blood work, get a fasting lipid panel–and let us know what happens (improvement, no change or any problems).

Each 2 scoops contains: Total protein – 15 g
Total fat – 4 g
Sat fat – 0.4 g
trans fat – 0 g
Omega 3 – 0.7 g
Omega 6 – 2 g
Cholesterol – 0 mg
Sodium – 1 mg
Total Carbohydrates – 7 g
Dietary fiber – 6 g
Sugars – 1 g
Calcium – 39 mg
Iron – 6 mg
Vitamin A – 49 IU

Suggested use: Add 2 level scoops to water, fresh juice or other beverages, or your favorite smoothie recipe. May also be used as a topping for salads, cereals, and soups. For a low-carb, high-protein baking alternative, substitute hemp protein for flour (up to 25%) in your favorite recipe.

Contains no wheat, no gluten, no soybean, no dairy, no egg, no fish/shellfish, no peanuts/tree nuts. Suitable for vegetarians/vegans. Certified Organic by QAI.

See the NYBC entry for further details:

Rhodiola rosea

For a review of the botanical Rhodiola rosea, we recommend “Rhodiola rosea: A Phytomedicinal Overview,” published in HerbalGram 2002;56:40-52 (American Botanical Council).

Known as a medicinal botanical for at least 2000 years, Rhodiola rosea derives from a plant typically found at high elevations in Asia and Europe. Traditionally, the botanical has been used to increase physical endurance, longevity, resistance to altitude sickness, and to treat fatigue, depression, anemia, impotence, and nervous system disorders.

Since the 1960s, Rhodiola rosea has found a place in medical and pharmacological texts, especially in Russia and Scandinavia. It’s described as a stimulant to combat fatigue, a remedy for psychiatric and neurological conditions, and a means to relieve fatigue and to increase attention span, memory, and work capacity in healthy individuals.

The authors of the 2002 Herbalgram review include two practicing M.D.s (Richard P. Brown, Assoc. Clinical Professor of Psychiatry at Columbia University College of Physicians and Surgeons, and Patricia L. Gerbarg, Assistant Clinical Professor in Psychiatry at New York Medical Center) who have used Rhodiola rosea in treating more than 150 patients with conditions including “depressive syndromes, mental and physical fatigue (secondary to psychiatric and medical conditions), memory loss and cognitive dysfunction from a variety of causes, sexual dysfunction, and menopausal-related disorders.” The authors also advocate additional research to confirm and define the benefits of this botanical for treating depression, disorders of memory and cognition, attention deficit disorder, Parkinson’s disease, endocrine disorders (infertility, premenstrual disorder, menopause), sexual dysfunction, and disorders of the stress response system (fibromyalgia, chronic fatigue syndrome, and post traumatic stress disorder). They also note continuing interest in studying the herb’s application to sports performance and aviation and space medicine (enhancing physical and mental performance while reducing stress reactions).

Read the full review at:

http://content.herbalgram.org/abc/herbalgram/articleview.asp?a=2333

See also NYBC’s entry for Rhodiola rosea at

Rosavin (Ameriden)