16 year survivor

[Towncrier]

Jenny - Please check your PMs. I sent you a couple (unrelated to this thread) and they are sitting in your inbox gathering dust.

And happy "sweet 16".

 

[shirleyb]

Jenny,
What a lot of courage you have! Thanks for sharing.

 

[JennyMominRI]

Jenny - Please check your PMs. I sent you a couple (unrelated to this thread) and they are sitting in your inbox gathering dust.

And happy "sweet 16".

For some reason I can't find them..can you resend?

 

[minnieandme]

Congrats on your 16 years. Wow, I didn't know these meds can be damaging your body. All we ever hear is they have this drug that people take so they can live longer, but we never hear about side effects of the drug. Thanks for sharing your story.

 

[dvcfamily41801]

Jenny I just read your story. You are an amazing woman.

 

[JennyMominRI]

The site should be up and working now

 

[luv2crash]

Amazing, I admire your strength.

 

[krcit]

Wow, your post brought tears to my eyes. You are so brave and so caring to put yourself out there in order to help others. God bless you.

 

[Monte Cristo]

I'll steal a line I think I saw someone else tell you on some other thread....Keep on truckin baby.

Here's to many more years.

 

[crazee4mickey]

Truly inspirational Jenny and thank you for sharing your story!
What a terrific milestone to reach...happy 16th!!

 

[pixiechick]

Here's to another 16 years, and many more beyond those!!

 

[JennyMominRI]

An article about side effects of HIV meds

You know that possible side effects are one of your main concerns when it comes to treating any health problem you are having. You want the treatment to work—but you also want the treatment to be tolerable and not change your life dramatically.

General Information About Any Medicine You May Be Taking

If you experience severe or persistent side effects or symptoms from any medicine, including side effects of your HIV meds, talk with your healthcare provider (doctor, nurse or physician’s assistant) as soon as possible. Your body may be having a serious reaction that requires immediate attention. Your healthcare provider or your pharmacist will be able to give you the best advice about how to handle side effects if and when they develop.

Common Side Effects of HIV Meds

You know—or may have heard—that managing the side effects of HIV meds can be difficult, to say the least. Many HIV-med side effects show up in the first weeks of treatment and eventually lessen in severity or go away. Other HIV-med side effects pose serious health problems.

Whether the med-related HIV side effects are mild, moderate or severe, it is crucial that you know how to handle them. Side effects are one of the main reasons people stop taking their meds—or take less than prescribed. This is especially dangerous when it comes to HIV meds, since not taking HIV meds as prescribed can cause the virus to become resistant to the meds. When HIV becomes resistant to a med, that med can no longer effectively control or suppress the virus. Resistance to an HIV med can ultimately limit future treatment options.

It is important to learn all that you can about any meds that you are taking and med-related HIV side effects, get support and guidance from your healthcare team and know that there are things you and your healthcare provider can do to manage side effects related to your HIV treatment.

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Diarrhea, Nausea and Fatigue

When you first start a new HIV treatment regimen, it is not unusual to experience common side effects of HIV meds—especially diarrhea, nausea and fatigue.

Diarrhea, or frequent loose stools, occurs in up to half of HIV-positive people taking meds. Starting or changing treatment can cause diarrhea. Your healthcare provider can suggest ways to handle diarrhea ahead of time if you are starting a med that is known to cause diarrhea.
Med-related nausea can occur after starting a new treatment. There are things you can do to lessen the severity of the nausea you experience. Talk with your healthcare provider for more information about handling nausea.
Fatigue—or feeling tired all of the time—can be related to a specific med, but it can also be the result of other underlying causes like depression, anemia (low red blood cell count), active illness or infection or poor diet. If you are often tired and the feeling doesn’t go away, talk with your healthcare provider so you can find what may be causing it and what you can do to feel better.
Please note that this list is not a complete list of side effects for any HIV med. Remember to read the complete safety information for each HIV med you are taking as part of your combination regimen and for those meds you may be taking to prevent opportunistic infections. Talk regularly with your healthcare provider(s) about possible med-related HIV side effects. Your healthcare provider may be able to help you avoid or manage side effects.

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Managing Side Effects for Long Term Health

As you live longer with HIV, other health issues that are a part of aging may affect your health—and some HIV meds may also increase the risk of some of these health issues, including your cholesterol (“lipids”) and its possible effects on your heart.

In general, protease inhibitors and some other kinds of HIV meds can affect your cholesterol to different degrees. Be sure to talk with your doctor about the differences among PIs—including their different effects on lipids. A PI’s effect on lipids can be a significant issue:

If you are already having problems with your cholesterol or other kinds of lipids
If you have a family history of high cholesterol and/or heart disease
If you are simply worried about the long-term health of your heart
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INVIRASE and Possible Side Effects

You may expect some side effects from HIV meds simply because they are powerful—but you want to be able to handle the side effects you do experience. After all, if you can’t take a med because of side effects, it can’t help you.

INVIRASE is taken with a low dose of ritonavir as part of a combination therapy regimen to control HIV and strengthen the immune system by increasing the number of T cells (CD4 cells).

INVIRASE is generally well tolerated
Stomach-related side effects: INVIRASE has a low chance of stomach-related side effects. In studies of Fortovase, the most common stomach-related side effects were nausea (10.8%), diarrhea (8.1%), vomiting (7.4%) and abdominal pain (6.1%). Compared with Fortovase, another form of saquinavir, INVIRASE appears to be “much better tolerated” in terms of stomach-related side effects, like diarrhea 1
Effect on the liver: In studies, there were no major liver problems in patients taking saquinavir boosted with ritonavir—including those with hepatitis. 2 Also, INVIRASE has not been shown to increase levels of bilirubin in the liver. In general, protease inhibitors can affect the liver. Some can cause very high levels of bilirubin, which can cause jaundice (yellow skin or eyes). Jaundice has occurred in rare instances in persons who already have chronic liver disease and are taking regimens that include saquinavir
Effect on lipids (fats in blood): INVIRASE is recommended as a PI option for patients with lipid problems. 3 After almost a year, cholesterol and triglyceride levels increased by less than 10% among patients taking saquinavir boosted with ritonavir 2
Like any HIV med, INVIRASE (saquinavir mesylate) may have certain common side effects.

In clinical studies of Fortovase (saquinavir), the most commonly reported side effects of moderate or severe intensity were nausea, vomiting, diarrhea, abdominal pain, feeling tired, pneumonia and changes in body fat
INVIRASE has been compared in studies with Fortovase and other protease inhibitors (indinavir and lopinavir/ritonavir) and found to have greater tolerability
For more information about INVIRASE and possible HIV side effects, please see the complete safety information posted on this site or printed in the patient package insert.

In a study lasting almost a year, more people taking saquinavir boosted with ritonavir in combination with other HIV meds kept their viral loads undetectable compared to patients taking indinavir with ritonavir and other HIV meds—most likely due to better-tolerated side effects. 2

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Because You Will Not Give In

You will be better able to manage living with HIV given the right treatment, care and support. Keep a side-effects journal with detailed information about your med-related and HIV side effects and symptoms, how often you have them and how long they last. Use this journal when talking with your healthcare provider about your HIV treatment. Your healthcare provider will work with you to make sure you are getting the best available treatment—which includes treatment you can handle.

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Sources

The information provided here is based on information found at the following

For additional information, please visit the resources section of this Web site.

This information does not include everything you may need to know about HIV and does not take the place of talking with your healthcare provider.

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WARNING:
INVIRASE® (saquinavir mesylate) capsules and tablets and FORTOVASE® (saquinavir) soft gel capsules are not the same and cannot be used interchangeably. INVIRASE may be used only if it is combined with ritonavir, which greatly reduces saquinavir's metabolism to provide blood saquinavir levels at least equal to those achieved with FORTOVASE. When using saquinavir as the only protease inhibitor in an anti-HIV regimen, FORTOVASE is the recommended formulation.



Taking INVIRASE/ritonavir with certain drugs could create potential for serious and/or life-threatening side effects. INVIRASE/ritonavir should not be taken with Pacerone®, Tambocor®, Rhythmol®, bepridil, quinidine, Seldane®, Hismanal®, ergot medications, Propulsid®, Versed®, Halcion®, rifampin, pimozide or products containing St. John's wort
Garlic capsules should not be used while taking unboosted saquinavir, due to the risk of lowered saquinavir blood levels
Taking INVIRASE with Mevacor® or Zocor® is not recommended. Caution should be used if HIV protease inhibitors, including INVIRASE, are used at the same time as other medications like these that are used by the body in the same way
Discuss all medicines, including those without a prescription, and herbal preparations you are taking or plan to take with your doctor or pharmacist
INVIRASE should not be taken if you have had a serious allergic reaction to INVIRASE or any of its ingredients
INVIRASE/ritonavir should not be taken if you have serious liver problems. Tell your doctor if you have or have had liver disease, such as hepatitis
People with severe kidney problems have not been studied when taking INVIRASE. Tell your doctor if you have or have had kidney problems
In people taking protease inhibitors, increased bleeding (in people with hemophilia) has occurred as well as diabetes/high blood sugar
Some people taking INVIRASE/ritonavir have had increases in cholesterol and/or triglycerides
Changes in body fat have been seen in people taking anti-HIV medicines. It is not known if taking protease inhibitors causes these changes, and the long-term effects are not known at this time
In clinical studies, the most commonly reported side effects of moderate or severe intensity were: changes in body fat, nausea, vomiting, diarrhea, abdominal pain, feeling tired and pneumonia
INVIRASE is not a cure for HIV infection or AIDS. INVIRASE does not prevent the transmission of HIV.

 

[dreamcometrue]

you are very brave to talk to openly about this! My DH's cousin is HIV positive too! Here's his website: http://www.onetoughpirate.com. You'd never in a million years know by looking at him that he's HIV positive. He's this big muscular biker dude, one of the nicest people I have ever met. He speaks at schools a lot, travels all over the country! He has been HIV positive for 23 years!!! He says sometimes he spends all day in the bathroom, throwing up, but he's still here and that's all that matters!

 

[Lachesis00]

 

[Tinks]

I'm glad you're a survivor Thank you for sharing your story. It's good to learn more HIV and chronic diseases and their side effects.

 

[Fitswimmer]

God Bless You Jenny! You and your family are in my prayers.

You are truly a blessing to so many people for sharing your story. You've enlightened me and I've shared what I've learned from you with others.

 

[freckles and boo]

I greatly appreciate your concern about people becoming complacent. Your meds post clearly shows that just because it is "manageable" doesn't mean it is easy. It takes a lot of stamina to put up with so many negative side-effects. I now feel like a big stupid baby for skipping my asthma maintenance inhaler just because it makes my throat dry!

 

[The Mystery Machine]

Read your story....very inspiring.

What struck me the most is that you can have AIDS and then have children who are not postive.
That is something I never realized.

 

[kaw1218]

I lost an uncle to AIDS, Congratulations on this very important milestone!

 

[glass- slippers]

A true inspiration! Thank you for sharing your story.