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Getting Ready to Start HIV Treatment

Part Three of Three in Project Inform's "What You Should Know About When to Start and What Meds to Use" Booklet

July 2011

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Managing Your Quality of Life

A lot of attention is put into making decisions about when to start and what to choose. But it's also important to consider your future over the next few years or even decades.

Stable Access to Drugs

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It's not uncommon for people to run out of one or more of their meds on occasion, but having a steady supply should be a priority. It can help you live your life more fully rather than waiting until the last moment to get a prescription filled. Keeping a steady supply requires you to work closely with your doctor, pharmacist and possibly insurance administrators.

Certainly, the best way to avoid emergencies is by planning ahead for weekends, vacations, moves or other times when your regular routine is disrupted. But even with good planning, meds get lost or people just forget to take them. What will you do to make sure you get your next dose? Auto-refills or mail order refills can help with this.

First, work with your doctor to establish about a week's overlap so you always have seven days (or more) of backup in case of emergency. If you go on an extended vacation, make sure you have enough meds for the time before you leave, when you're away and the first week after you get back. Refresh your emergency supply to avoid expired pill.

It's also important to consider people you would call in case of an emergency, and keep those numbers with you. Who would you call on a weekday or weekend? Would your insurance cover a visit to an ER to get meds?

If you rely upon a public program, make sure you know when you need to re-apply and if you have out-of-pocket costs. Be sure to keep up with enrollment requirements of your insurance and any premiums or out-of-pocket expenses. Make sure you read, act on and file papers sent to you by these programs.

Support Network

Having people around you -- friends, family, support group members, neighbors or medical providers -- helps support your emotional and practical needs. Friends could remind you to take your meds. If you know other HIV-positive people, you can help each other by talking about how to handle certain problems related to HIV.

Evaluate Your Regimen

Because your life and health change over time, your regimen may need to as well. What worked when you started treatment may not be the best fit a few years later. So it's important to revisit your treatment from time to time and ask yourself how you're doing. Does it still fit your medical needs and lifestyle? Do you want to try something else? In the end, you may not need to change anything, but at least you considered it as part of maintaining your health and quality of life.

Keep a Diary

Keeping a diary is not for everyone, but it may be useful to remember details that might help you manage certain aspects of HIV treatment or help you explain certain issues to your doctor. You may find different connections; for example, between certain types of stress you experience and side effects. Include whatever is important to you: when you took your meds, reason for missed doses, how you felt, etc.


Checklist for Getting Started

  • I've been able to find a doctor experienced in treating HIV.
  • Since I haven't been able to find an experienced doctor, I've discussed with my current doctor ways to improve our knowledge around treating HIV.
  • I will ask how to properly take my medicines.
  • I know what my first regimen will be and why I want to use it.
  • My doctor and I have planned ahead in case my first regimen doesn't work out.
  • I understand how my doctor and I will check to see if my regimen is working.
  • I understand the need to take my meds on schedule every day.
  • I know what situations might make me miss a dose.
  • I know what side effects may give me the most problems, like nausea or diarrhea, and likely to get better over time.
  • I understand that long-term side effects are possible and that some of them are not known yet, as with the newest drugs.
  • I'm aware what I can do to help avoid or lessen side effects.
  • I'm aware what I can do to help avoid or reduce resistance.
  • I want privacy when taking my meds, and I've thought about how to ensure that.
  • I have dealt with or am dealing with issues that could affect my adherence (housing, substance use, mental health).
  • I know how to keep up with the requirements of the programs that cover my care and medications.
  • If I have questions and my doctor is not available, I can call ____________________ or _____________________.


Online Resources That May Help

For HIV Care

Insurance Programs

 

For Women

Connecting With Positives

For People of Color

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This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
 
See Also
"What You Should Know About When to Start and What Meds to Use": Table of Contents
Part One: Understanding the Details of HIV Treatment
Part Two: Your Ability to Start and Maintain

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