Your Ideas for the HIV Treatment Blog

Earlier this year, the treatment information program launched this HIV treatment blog. Since then we have posted 27 new topics and there have been about 41 comments made to these topics. Over 1600 hits have been made on the blog (blog has been seen 1600 times). We try to post topics that are relevant to those people with HIV and need your ideas for 2008. What do you want to see discussed on this blog? What do you think about this blog? Why do you go on this blog? Let us know as we try to decide what to do in 2008. In the meantime, we wish you a happy New Year and look for us in 2008

B12 Low in HIV-positive folks!

Are you getting checked for your B12 levels? Many persons with HIV have low B12 levels in their blood. B12 is important because it helps to maintain nerve cells and red blood cells. It can be found in food products with high protein such as fish, meat, poultry, eggs, milk and milk products. B12 deficiency is associated with an increased risk of peripheral neuropathy (nerve damage causing numbness, burning or tingling feeling in the toes, feet, hands or arms), decreased ability to think clearly, and even anemia. Persons with HIV with low B12 levels may feel very tired and have low energy. You should ask your doctor to check your blood levels. If you have low B12 levels, you should get B12 supplements. Have you experienced low B12? Have you tried any other complementary health products to increase your energy? What other health issues are you faced with?

AIDS Vaccine

What is happening with the AIDS vaccine? There have been over 38 million people infected with HIV worldwide in the last 26 years and yet there hasn’t been an HIV vaccine created. Recently, yet another AIDS vaccine study was stopped when it was discovered that in was not effective in preventing HIV infection. There were actually more people infected with HIV in the vaccine study compared to those who were not in the vaccine study. The virus mutates (changes shape) so quickly that it has been difficult to find the right vaccine. Despite this latest setback, scientists are still working on the development of an AIDS vaccine, however one wonders how much longer do we have to wait? What do you think about all of this?

Sleeping Problems?

Do you suffer from sleep problems? We hear about lots of people having trouble falling asleep or waking up in the middle of the night and unable to sleep. This is defined as insomnia. This could be a side effect of certain HIV medications at least in the initial stages when you are first starting on HIV meds. Some people need to take so called sleeping pills to battle insomnia, however there’s debate as to whether this is beneficial. Other ways may include drinking hot milk or chamomile tea before bedtime, and to limit caffeine and sugar, especially in the evening hours. So how do you deal with sleeping disorders?

Depression

Do you suffer from Depression? Do you know if it is caused by HIV, your medications or you? Depression is very common amongst HIV-positive individuals and can arise for a number of reasons. Decreased interest in daily activities, tiredness and fatigue, trouble sleeping or too much sleep, loss of appetite, difficulty concentrating, feelings of worthlessness and guilt are some of the symptoms of depression. Some people need to take antidepressants to manage their depression. What do you know about depression and how do you cope? Next Wednesday, November 14th, the BCPWA treatment information program will host a community forum on this topic. It will be presented by a local psychiatrist. By attending, you will learn more about depression and HIV. Check out our website for more information about this event.

New Drug Developments

There’s lots of activity going on in development of HIV medications. During the month of October 2007, there have been two new drugs approved in Canada and one new drug approved in the United States. Atripla is now available in Canada. It becomes the first once-daily single tablet formulation (contains Sustiva, Tenofovir and Emtricitabine all in one pill). Maraviroc, also approved in Canada, is a new entry inhibitor. Raltegravir, an integrase inhibitor, has gained approval in the U.S. and is expected to be given approval in Canada soon. This is all good news, giving those who are developing drug resistance hope for the future. What are your thoughts on new drug developments? Have you had experience with any of these new drugs through clinical trials?

Treatment Fatigue

Do you ever think about stopping HIV medications? In the current issue of the living+ magazine, there’s an article about treatment fatigue. Some people with HIV are just plain tired of taking their medications and chose to stop. Is this a way of ignoring your HIV? There has been data showing that those who take drug holidays may have an increased risk for cancer. Treatment fatigue may be a sign of the times just like condom fatigue. Based on the empowerment model, BCPWA continues to hold the position that any HIV-positive person has the right to refuse treatment, even it that places the person’s life at risk. What are your thoughts on your HIV meds? Are you getting tired of them? How do you manage?

Complementary and Alternative Therapies

Do you use complementary and alternative therapies? Many persons living with HIV use complementary and alternative therapies to manage the disease as well as some of the side effects associated with HIV medications. Unfortunately, physicians aren’t always knowledgeable on such therapies and may not even be supportive of them. They say such therapies are not supported by typical medical testing. What have been your experiences with complementary and alternative therapies? What do you use that helps you? For your information, the BCPWA Treatment Information Program will have a 6-week workshop series on complementary and alternative therapies each Thursday evening in November + on December 1st - at the BCPWA lounge (starting @ 6pm). This is open to anyone wanting to learn more about complementary and alternative therapies. Some interesting people will be presenting. You might want to come... so hope to see you there!

St. Paul's moving?

Is St. Paul’s Hospital moving? In the current living+ magazine, there’s an article about the possibility of St. Paul’s moving from the west end. Providence Health Care is looking at how to expand St. Paul’s currently limited facilities in the future. Some land was purchased on False Creek Flats (north of the rail station by Main Street), and Providence holds an option to use that land. If this happens, how will it affect the many persons living with HIV in the West End? BCPWA will be meeting with Providence officials this fall to discuss what is going on. What do you think about all of this?

Syphilis Alert

Do you know that syphilis is rising in BC at an alarming rate? We have written about syphilis before on this blog, however the importance of this sexually transmitted infection warrants another blog entry. Recently, the British Columbia Centre for Disease Control reported that in the past 5 years, there has been a steady increase in the number of syphilis infections among men who have sex with men (MSM). In 2006, 46.5 percent of new syphilis infections in BC occurred in MSM of all ages. 64.5 percent of these MSM were HIV-positive individuals who are more likely to present with later stages of syphilis. Syphilis is detected by a blood test and is available at most clinics. MSM, both positive and negative, with an active sex life should get tested regularly. Have you had experience with syphilis and taken treatments for it?

Side Effects and HIV medications

How do you cope with diarrhea? HIV medications come with side effects, and diarrhea is a common and unpleasant side effect of many HIV meds. One way to manage this is through a BRAT diet (bananas, rice, applesauce, toast). What other side effects are you experiencing and how have you been managing them? Do you ever think about stopping your meds because of unpleasant side effects?

Remembering to Take Medications?

HIV medications – not something to forget… but people do miss taking them: Side effects, busy schedules, drug fatigue, etc. But, skip too many and you can develop resistance – the drugs won’t work. Then, you have to switch to other HIV drugs. How do folks remember? Pill boxes? Alarm reminders? We’ve heard that “HIV drugs suck, but HIV sucks worse.” How do you remember taking your drugs?

HIV/AIDS & Funding

Where is AIDS funding going? In 2004, the government announced an increase of funding to the national HIV/AIDS strategy, however little of that funding has even shown up at community based AIDS organizations. As a result, these organizations, which provide direct services to PWAs, have experienced significant hardships in the past couple of years. Many have had to cut services and programs which has impacted the health and well-being of persons living with HIV. BCPWA has joined forces with AIDS service organizations across the country to lobby members of parliament to pressure the federal government to meet its commitment to improve services for people living with HIV/AIDS. What do you think about this? What can you do?

Housing, Security and HIV

Lack of affordable housing is a big issue in Vancouver. Though there are condos being built just about everywhere, most are unaffordable. Rent is ever increasing as is the cost of living (food/grocery prices are on the rise now too). A number of studies suggest that a high percentage of people living with HIV are also living in poverty, often on the streets. One thing is for sure, for those living in the lower income brackets, the rising cost of living in Vancouver is becoming increasingly challenging. How can a person living with HIV/AIDS even think about their well being when they lack basic needs, such as affordable housing and adequate food? What are our priorities these days? What are your thoughts on this important issue? Is anyone doing anything about this?

Your Testing in the United States?

How do you feel about having your blood work sent to the United States?

Maraviroc is a new HIV drug that will soon be made available. However, in order to qualify for this drug, you will need to do something called a tropism test. The tropism test will check to see if you have R5 or R4 receptors on your CD4 cells as Maraviroc will only work on R5 receptors (to prevent the virus from attaching to the CD4 cell). Right now, this test can only be conducted in California, as Canada doesn’t have this technology. Does having your blood sent to the States worry you? What are the issues and concerns, if any?

Is it Age or HIV....?

Is it age or is it HIV? As people with HIV are now living longer, treatment of HIV has become more complex. Health conditions such as cardiovascular disease, diabetes, osteoporosis and depression can be attributed to both HIV and age. Some drug companies may like us to think aging causes some of these health conditions in order to minimize the associated side effects of their drugs. What do you think? What do you think about as you're aging with HIV?

HIV Drugs - Start Early or Later......?

Do you remember the days when “hit hard hit early” were the norm. It wasn’t that long ago that HIV-positive individuals were told to start taking HIV medications right away. Due to side effects and resistance, we re-examined this and learned that you didn’t need to start drugs so quickly. Now the trend seems to be to start earlier again. There are a lot of new drugs coming down the pipe, however we still don’t know what the long term side effects will be from these drugs. There’s also a theory that expanding access to antiretrovirals may help curb the growth of the HIV epidemic (by getting everyone undetectable). A lot of research going on, but are we revisiting the past? Two steps forward, one step back? What do you think about all of this?

Marijuana in B.C.

Marijuana benefits HIV-positive individuals as it is used principally to suppress nausea and vomiting due to side effects of HIV medications. Did you know that HIV-positive individuals are being cut off their legal supply of medicinal marijuana because they cannot afford to pay? It is appalling that people in need of this medical necessity are referred to a collection agency. Recent court rulings have ordered the federal government to provide medical marijuana to chronically ill patients, however current policies have presented obstacles for HIV-positive individuals securing medicinal marijuana. BCPWA has written a letter about this to the Federal Justice Minister. Let us know your thoughts on this issue. Any bad experiences?

Gotta Go.....Doctor

TIP has heard reports of patients really not liking their doctors. For example, a doctor in Ottawa, told a member who once lived there (from way across his doctor’s office, and as he wrote in the chart) that the member had herpes. The doc barely looked up as he said this. While he’d taken a look at a possible herpes lesion, the physician never did any tests. It was only years later, when informing a BC nurse about this diagnosis, when this member even learned that only if a lesion is active can a culture from it make any definitive diagnosis. In another instance, this same doctor started telling the member what symptoms he was experiencing (when diagnosed with giardiasis), instead of listening to the member’s own experience. Perhaps it’s time for a new doctor? You need to work well with the doctor because if you don’t, the paths and directions that you choose to follow, or not – will affect your health outcomes. Horror stories seem to abound. What have been your experiences?

A Bureaucratic Response on Facial Lipoatrophy!

The BCPWA Society has been advocating to get coverage for injectable compounds used to treat HIV associated facial lipoatrophy through the Medical Services Plan (MSP) so that PWAs don’t have to pay out of their own pockets. Compounds such as Bio Alcamid and Sculptra are used to treat HIV associated facial lipoatrophy. Doctors treating people with HIV associated facial lipoatrophy state clearly that it is a treatment leading to longterm health improvement as opposed to a mere cosmetic procedure. Recently, the Ministry of Health Pharmaceutical Services responded and informed us that they were not familiar with the injectable compounds used as treatments for HIV associated facial lipoatrophy. They needed more information. We have been writing to the Ministry for well over a year on this issue, and now they need more information! It boggles the mind. Just more bureaucracy! What do you think? If interested in working with us on this important health issue, please contact zorans@bcpwa.org or make a comment on this blog.

Bone Health

There is growing evidence that HIV-positive individuals are more likely to have bone problems. It is not fully known whether this is the cause of HIV or HIV medications. Osteoporosis occurs when your bones lose mineral content and can become more brittle and fracture more easily. Osteopenia is the loss of bone minerals that is less severe than osteoporosis, however it is a warning sign. Lots of folks talk calcium supplements to improve their bone health in addition to weight bearing exercises. What do you do? What questions do you have about bone health and HIV? What are your thoughts on bones?

Syphilis and HIV

Syphilis is on the rise here in Vancouver. Early symptoms of syphilis are an open area called a chancre which can be firm, round, small and painless. There are some indications that it may progress more quickly and severly in people with HIV. If untreated, syphilis can progress to late stages of the infection leading to organ damage. The treatment for syphilis consists of a course of antibiotic injections. These injections may involve higher doses for a longer period of time in HIV-positive individuals. It is important to take the entire course of this treatment. What questions do you have about this or any other sexually transmitted infection, and its treatments?

Cardiovascular Health and HIV

As people with HIV get older, cardiovascular conditions become an increasing concern. Cholesterol and triglycerides are two major lipids (types of fat) that circulate in the blood and can contribute to cardiovascular disease when they become high. Many use lipid lowering drugs like statins (i.e. Lipitor, Lescol) to manage high lipid levels. Some lipid lowering drugs can interact with your HIV medications and may increase risks of side effects. There are other things people do to manage cardiovascular conditions such as healthy diet, weight management and physical activity. What are your experiences with statins? What else do you do to manage high lipid levels? What questions do you have?

Skin Care and HIV

In the summertime, more skin is exposed, so one should be aware of the various skin problems that may occur with HIV-positive individuals such as rashes and skin cancer. Seborrheic dermatitis is one of the most common skin problems in people with HIV. If it happens on your scalp, it’s known as dandruff. It can also appear as red, greasy, scalpy patches on the face, chest and back, and in your groin and armpits. Some possible treatments include ketoconazole cream together with hydrocortisone cream to keep this under control. What have been your experiences and what have you done to take care of your skin? What questions do you have about skin conditions?

Hepatitis C and Treatment-Side Effects

Hepatitis C is present in about 30% of people living with HIV/AIDS. Treatment for HIV/Hepatitis C co-infection consists of taking pegylated interferon with ribavirin. This treatment has side effects including mood swings, anxiety and irritability, among others. What have been your experiences with this treatment? How have you managed side effects? If you want to know more about this treatment, what questions do you have?

Travelling with HIV

Travelling with HIV can be the roughest challenge. Staying put can make one go crazy, but packing the medications properly (original containers, prescription available) and still having room for clothes in carry-on has proven difficult, at times, especially on long trips. And, that doesn’t even begin to deal with the refrigeration requirements for drugs that aren’t stable after 30 days, or in heat. What to do? Has anyone else dealt with this problem?

Facial Lipoatrophy

There are now treatments for facial lipoatrophy such as Bio Alcamid, Sculptra, and Restylane, however these treatments can be very costly. The BCPWA Society has been advocating for the Ministry of Health to provide coverage of these procedures through the BC medical services plan. As with any treatment, there can be side effects. Some potential side effects of the above mentioned treatments may include pain, swelling, bruising, redness and infection. What have been your experiences with these treatments? Are you happy with them? What questions do you have about these treatments?

Welcome to the BCPWA Treatment Information Blog

The British Columbia Persons With AIDS Society Treatment Information Program (TIP) is providing this new online service for HIV-positive British Columbians. Individuals can participate in a dynamic exchange of HIV treatment information through BCPWA’s treatment information blog. The discussion board allows HIV-positive men and women to post questions and comments about HIV treatments and health in general. It is another way of providing information and an opportunity to share experiences at the same time. New topics will be posted each week allowing members to comment, ask questions, and share stories.