Managing HIV Medication Side Effects

By Philadelphia FIGHT’s Project TEACH Team

From PHN Issue 29, Summer 2016

All HIV medications have side effects, but most of them are manageable. Since you can’t always get the high quality health care you deserve in prison, here are some tips to help.

Know what a side effect is.

All meds have a wanted or “primary” effect. For example, we want HIV meds to stop HIV’s life cycle. At the same time, medications may have unwanted effects, or side effects. For example, feeling sick to your stomach after taking HIV meds is a side effect. But not everything is a side effect! Something that feels like a side effect might be related to anxiety, depression or stress, what you ate last night or the cold your cellie has. You are more than your HIV and your HIV medications.

Ask your medical provider about your options.

Before starting any medication, your doctor should tell you about the different drugs you could take. If they don’t, it is up to you to ask. Your doctor should also prepare you for the potential side effects of each medication.

Be mindful of the adjustment period.

Your body will probably take about 4-6 weeks to adjust to a new medication. Nausea is the most common side effect during this time. Some people also experience headache, dizziness, fatigue and/or muscle pains. If these don’t start to get better after two months, your medical provider might prescribe a different medication. You will need to tell them what’s happening.

Track your side effects.

It will be easier to explain your side effects to your medical provider if you’ve been tracking them. Write down what time you started experiencing the side effect, what it felt like, what else was happening before or during the side effect and when it stopped.

Remember that serious side effects deserve serious attention.

Many side effects are uncomfortable but usually not “serious.” Ask for help immediately if you experience any of the following serious side effects:

  • Fever (especially over 102)
  • Difficulty breathing
  • Rash (especially with fever)
  • Mental health change
  • Chest pain
  • Blood in stool

Talk to your doctor before stopping or changing your medication.

You don’t want to stop or change doses of your medication without consulting with your healthcare provider. If you think that you’re experiencing a side effect, contact them. They should review your symptoms, medical history, medication regimen and current state of health to find and treat the cause of the symptoms.

Remember that everybody is different.

When prescribing your dose of a medication, your medical provider should consider your age, body weight and size, sex, general health, and other illnesses and medications. These are all factors that impact how medications affect you. People experience side effects differently, so what works for them may not work for you.

Questions to ask yourself:

  • Which side effects do I have the hardest
    time dealing with? Some people have an easier time dealing with nausea than diarrhea, for example. It’s good to know this about yourself when telling your doctor what treatment you think will work best for you.
  • How long am I willing to put up with a particular side effect?
  • Do I have family or friends inside and outside of prison that I can call on for support if my side effects are bad?
  • Am I willing to take other drugs or find new ways to help control side effects?

Questions to ask your medical provider:

  • What are the possible side effects of the drug?
  • When will the side effects start?
  • How long will they last?
  • Will the side effects go away by themselves?
  • Are there any side effects that will stay after I stop taking the drug?
  • Can I do anything to prevent certain side effects from happening?
  • What should I do if I have a certain side effect?
  • Are there any dangerous side effects that I should know about? What should I do if I start having them?

Every medication has a potential for side effects, but not everyone will have them. Being able to recognize side effects will help you keep them in check. There is more than one way to treat a side effect. Work to find solutions to the side effects, so that you can reduce the physical symptoms, and feel better.

Project TEACH (Treatment Education Activists Combating HIV) is an innovative health education program that trains people living with HIV to act as peer educators, activists and advocates in the under-served communities hardest hit by the AIDS pandemic.

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