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Women Want to Know

January 1997

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

WOMEN ALIVE AND WOMEN AT RISK have developed a survey by and for women with HIV/AIDS who are taking the protease inhibitors. This survey came about because of the need for answers based on facts, not speculation and because of serious lack of useful information for women about the new class of drugs. Survey results will be published in a future issue.

If you are a woman with HIV/AIDS who has taken protease inhibitors or are considering taking them and want to help us all understand what the heck is going on in women's bodies, please fill this out and mail it in. ( do it today!)



THIS SURVEY is designed specifically and solely for women with HIV/AIDS.

What is your most recent T-cell count?

What was your lowest T-cell count?

What is your most recent viral load test result?

If you have had more than one, what was your highest viral load?

Have you had any opportunistic infections (OI's) such as PCP, MAC or crypto?
If so, please list which ones and the approximate month and year you had each one.

Have you tried to get protease inhibitors but not been able to? Y - N
If so, check or write in the reason(s):

My doctor would not prescribe them.
I was told that my compliance would be a problem.
My clinic or pharmacy doesn't provide them yet, to anyone.
I could not afford them.
My Insurance did not cover them.
Other (please write in).

Are you on combination antiviral therapy? Y - N
If so, which antiviral drugs are part of your combo? (check which ones & beside each one you take, jot down when you started and/or stopped taking it)

Name of Drug   Started  Stopped 

Are you taking more than one protease? Y - N
If yes, please list reasons.

Did you develop resistance to the protease? Y - N
If so which ones?

What other drugs are you taking?

    Prescription meds? (please list).

    Non-prescription, over-the-counter meds? (please list).

    Herbal or natural compounds?

    Alcohol? About how much?

    Street drugs? Which ones and about how often?

Now we want to ask in more detail about your experience with protease inhibitors, such as Crixivan, Invirase, Norvir and Viracept.
Did you have to switch from the protease that you started on? Y - N
If so, about when?
For what reason?

Which other protease inhibitor did you switch to?

Did you have to stop taking any protease inhibitors at all? Y - N

If so, about when and for what reason?

Have you changed the dose or amount of the protease drug you take? Y - N
If so, about when and for what reason?

If so, did you change to taking more or taking less?
Was this on your own, or at your doctor's suggestion?
Did you add another protease? Y - N
If so, which one and why?

How often have you missed or skipped doses of your protease inhibitor? (Check which answer comes closest).

Once a week or less.
Several times a week.
Almost Never.

Have you experienced any of the following side effects?
(Check each side effect that applies)

Trouble concentrating
Memory Loss
Mood Swings
Back Pain
Joint Pain
Abdominal Pain
Muscle Pain
Breast Pain
Under Arm Pain
Gas Pain
Dental Pain
Bleeding Gums
Blood in Urine
Kidney Stones
Eye twitches
Metallic/acidic Taste
Skin irritations/itching
Menstrual Changes
PMS changes
Hair Loss
Varicose Veins
Change in breast size
Loss of fat in limbs
Are you more sensitive to the sun? Y - N
If you have experienced Menstrual Changes? Please list symptoms.

Do you feel that taking protease has affected your hormone levels? Y - N

Have you had your hormone levels measured? Y - N
If so, what were results?

Have you gone through Menopause? Y - N
If so, ( At what age? _________) After being infected for how long? _____

Has taking protease affected your dosages of hormone replacement therapy?

Have you noticed a difference in your ability to digest different foods?

Before Protease  With Protease
Fatty Foods
Acidic Foods
Others: Please list.

What kind of facility provides your main HIV medical care? please check.
County or city clinic or hospital (such as 5P21 in L.A.)?
Community-based clinic (such as AHF in L.A.)?
Private doctor or private group medical practice?
HMO (health maintenance organization such as Kaiser)?
Other (please specify).

What kind of health insurance do you have, if any? (check any that apply)
Private insurance, such as through your employer, former employer, or the employer of a family member (an HMO counts here, too)
Medicaid (Medi-Cal in CA.) Medicare.
Ryan White Care funded health care.
No insurance.
Other type (please specify ).

How have you obtained or paid for your protease inhibitor? (please check.)
ADAP (AIDS Drug Assistance Program).
Clinical trial.
I pay for it myself.
I get it through the pharmacy associated with my clinic or doctor, but am not sure how it is paid for.
From a community buyers club.

Are you undecided about whether to take Protease Inhibitors or not? Y - N
If so, why?

Are you enrolled in any clinical trials? If so, which ones? (please list) Y - N

This concludes our questionnaire. Thank you so much for taking the time to fill it out. We hope to provide some insight to our readers, and membership, as well as the research community. We believe that what happens in women's bodies with AIDS is significantly different than that of our male counter parts. We believe that research done on men does not automatically cross-over to women. In fact, in 1992 while attending the AIDS Clinical Trials Group, after Dr. Fauci's presentation on lymph node studies, one of our members stood up at the microphone and asked: "Dr. Fauci, what about women?" and Dr. Fauci replied: "I imagine my research crosses over into women." To which the activist at the microphone replied: "That's nice. We imagine a cure for AIDS." To date, studies and hard core scientific facts about women with HIV/AIDS are seriously lacking. To date, there are no medical recommendations on how to treat hormone imbalance in women with HIV. ( Hellooo? WIHS, we're waiting? )

If you are a male and you have answered these questions, please indicate your gender. Feel free to send it in.

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
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