Preparing to Start Treatment
Part of A Practical Guide to HIV Drug Treatment for People Living With HIV
In a Capsule
- Starting treatment can cause some people to feel anxious.
- Before you take your first dose, you may want to think through some practical issues as well as your feelings and attitudes about treatment.
- We've included some helpful tools you can use to help you prepare.
Before starting treatment, there are many issues -- both medical and non-medical -- that you may want to consider.
- What does HIV treatment mean to you? Treatment can mean different things to different people. Thinking about treatment may make you all too aware of having HIV, just when it finally seemed like a smaller part of your life. You may perceive the need to start treatment as a sign that your health has deteriorated and it is time to take action. Maybe you feel concerned about the future, about the impact of the drugs on your body, your lifestyle and your long-term health. It can be difficult to adjust to taking medications every day; don't be afraid to ask for help (from your doctor or an AIDS service organization) if you think you need it.
For me, the biggest part of HIV is losing control of life. When I was told I had to start meds, I didn't feel that sick, and so I didn't feel in control because I wasn't even aware of the problem. The control came back when I learned my options.
Know your lifestyle and habits and don't be afraid to talk about them with your doctor. This could help identify the treatment that will best fit your life. And don't lose sight of why you are taking HIV treatment. The pleasures of the days and years to come make the little hassles worthwhile.
- How do you feel about taking antiretroviral drugs? You may think of treatment as a positive step that you're taking to improve your health. Or, like some people, you may have strong feelings of skepticism or fear about starting treatment. It is very important to discuss your feelings with your doctor and work through them before you start taking medications.
- Will you be able to take medication on a regular, ongoing basis? To keep your drug combination working, you must consistently stick to your pill-taking schedule. Skipping doses can lead to drug resistance, which will cause your treatment to stop working and will limit your future treatment options (see Appendix E). To avoid this, you must be ready to make a firm commitment to taking the drugs as directed.
- Have you thought about the ways your pill-taking schedule may affect your daily life? Taking medication on a daily basis will have an effect -- sometimes dramatic, sometimes not -- on your life and your lifestyle. Some drugs need to be taken only once a day, while others must be taken twice a day. Although most drugs can be taken either with or without food, a couple of them must be taken on an empty stomach. Think about your daily routine, and whether you'll have to make any changes to accommodate your pill-taking schedule.
- What about work and social situations? Do your family, friends, co-workers or roommates know your HIV status? Could taking meds or having them around your home or workplace reveal your status to anyone? If this could be a problem, think about how you might be able to avoid this: for instance, maybe you can time your doses so you take them at home instead of at work.
- Do you know the possible short-term and long-term side effects of the antiretroviral drugs you will be taking? Side effects don't affect everyone the same way -- for some people, they may be mild or barely noticeable. However, for others, side effects can be much more severe and interfere with daily life. Look at the most likely side effects for the different drugs you're considering. Do you find yourself more worried by the prospect of some side effects than others? Ask your doctor about ways you might be able to minimize some of these side effects.
- Will you be able to deal with the side effects in your day-to-day life? If reaching your workplace requires a long commute with no possibility of bathroom stops, medications that cause diarrhea might be particularly difficult for you. Try to learn as much as you can about side effects and how to cope with them before starting treatment. There may be quite a bit you can do. (For more information, see CATIE's Practical Guide to HIV Drug Side Effects, available online at www.catie.ca or call 1-800-263-1638 to order your free copy.)
- How will you pay for treatment? Antiretroviral drugs are expensive. Some people with HIV have private insurance, often through their job, that can cover some or all of the costs of antiretroviral drugs. Many others must rely on provincial or territorial assistance programs to cover their prescription drug costs. Talk to your doctor and your pharmacist about this issue. Most people with HIV are able to get most or all of their drug costs covered, but this may involve some extra paperwork. It's best to sort this out before you start treatment.
By considering these issues before starting treatment, you will give yourself the best chance of living well with HIV, not just longer. Discuss any concerns you may have with your doctor. Your doctor may then be able to recommend a combination of medications that is best suited for you.
|ART Start Checklist
These are some of the issues that might come up when you start taking HIV treatment. Think about how these might affect your feelings about treatment and your willingness to start. Don't let this list scare you -- you won't have to face every issue on it. But it may help you decide which possibilities you would or would not be willing to risk.
| ||This would be a huge problem for me.||This would be a challenge, and I would need some help to manage it.||This would be a bit of a problem for me, but I could handle it.||I would be OK with this.|
|What if I had to take some doses with food?|| || || || |
|What if I had to take some doses on an empty stomach?|| || || || |
|How do I feel about taking pills every single day?|| || || || |
|What if I had to take pills once a day?|| || || || |
|What if I had to take pills twice a day?|| || || || |
|What if each dose meant taking more than one pill at a time?|| || || || |
|What if I found myself out of the house without my pills and had to go home to take them on time?|| || || || |
|What if other people, such as my family or co-workers, found my pills or saw me taking them?|| || || || |
|Is there a pharmacy where I would feel comfortable going to have my prescriptions filled and to ask questions?|| || || || |
|What if my drugs cause side effects such as ...|| || || || |
|... diarrhea?|| || || || |
|... nausea (feeling sick to my stomach) or vomiting?|| || || || |
|... poor sleep or wild dreams?|| || || || |
|... skin rash?|| || || || |
|... jaundice (yellowing of the skin or whites of the eyes)?|| || || || |
|... a visibly thinning face or a visible buildup of fat in my belly or elsewhere (lipodystrophy)?|| || || || |
|... high cholesterol levels that could lead to cardiovascular disease in the future?|| || || || |
Some other questions you may want to think about:
- How do I feel about HIV treatment? Does it feel like a positive step to take for my own health or something I am being forced to do?
- Would being on HIV treatment make me feel like I have more or less control over my health? What would help me feel more in control?
- What are my biggest fears and concerns about starting treatment? What are my biggest hopes?
- Do I have people I can go to with practical concerns and questions about HIV treatment?
- Do I have drug coverage that will handle most or all of my drug costs? If not, how can I get financial support?
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