Never Settle!

Submitted on Jun 21, 2021 by  sologirl

Hi all, as an aging member of our community I have seen and dealt with a lot of issues.

Yesterday during a group conference call regarding health and aging with HIV, I learned that a drug I took for my HIV back 20 years ago was the probable cause for my bout with Dementia.

While I understand that the drug manufacturers are pushing these drugs out with FDA clinical trials that don't run for many years, and I am grateful for drugs that have kept me alive, it's not the whole picture. My quality of life is.

I am angry and sad that when they discovered this drug causes side effects that damaged my brain they didn't reach out to me or my provider and do the right thing. I am now, 20 years after the dementia started and 10 years after they supposedly discovered this major side effect, just hearing about it from a study nurse. I lost several years of life due to this drug. I had to go on disability, couldn't even read a child's book, couldn't drive, lost my independence and then my marriage.

I hear from some of my HIV peers that their providers tell them just to deal with the side effects, don't question the fat gain, or the nausea, or whatever because we should be grateful to be alive.... Well sure, there's nothing wrong with being grateful and we should be grateful and doing our part in taking the best care of ourselves with proper nutrition etc. But when the treatment for one disease is causing serious illness thru it's side effects there is no quality of life, and when that leads us to stop taking the drug all together it's a problem.

I think the drug companies have been making some serious cash money at our expense and not taking responsibility for the damages being done as they go along. Honestly, I think there should have been a cure by now and that is probably hiding in some vault somewhere because making money off chronically sick people that depend on their drugs is a gold brick paved highway for drug companies.

I am just another crack in the pavement to them, they'll just keep making their drugs and when I become a pothole they'll fill me in with some other drug and keep right on going.

I wonder what else will pop up as I age. But here I am a prisoner of my disease, and a prisoner to the drug companies.

Please question your doctors, please ask the pharmacist to explain side effects. Check out the clinical trial results and know that you're worth more than just a pill that keeps your virus at bay.

Don't settle for their excuses, PLEASE speak up for yourself and your sisters in HIV.

Submitted by Red40something

I was just reading today (interesting timing) about neurocognative disorders associated with HIV and its treatments.

I am so sorry you were in such a dark place, but so glad you are here and stronger to tell about it! 

As we age its easy to chalk it up to "forgtfulness", but often it does have to do with disease process and meds. Like you said its important to stay up and the lastest in medications and side efects, and most of all, use your voice to protect and advocate for yourself.  While ATR medications can cross the blood brain barrier to fight virus there, the concentration of the medications  can have both positive and negative effects. There are sublte differences between regular demntia and HIV induced dementia, and so its easy to overlook if you aren't looking for it. ( as if aging wasn't hard enough!) Light blessings to you sister. <3


Submitted by JoDha

Thank you for sharing. This made me cry. Yes, that is true that we are told to just shut up and take it. And I always pick up a fight to which people say I have no gratitude for the medicine that keep me alive. Gratitude I DO have but then when there are more better medicines available, why can't I switch? Then I use all my power of advocacy to let doctor know that I know a lot (yet actually not a lot though) about HIV medicines hence I should be obliged to be made a choice to switch. It was a sheer decision of my mind that helped save me from peripgeral neuropathy and then with other drug, anaemia, and yet with another drug a bout of depression + anger. In 16 years from now, I have changed at least 4 drugs - that too with a fight!! 

Are you comfortable disclosing what drug was that which have dementia affect? Just for heads-up.



Submitted by sologirl

Hi Jo, thanks for the comment. Fighting for our dignity and independence is going to get more difficult as we age with HIV. The drug combo I was on was Atripla and that contains efavirenz and that is a bad drug.

there are some legal actions going on due to the numerous negative side effects it caused.

thing is we have no idea on the long term side effects of the drugs were taking these days. Just remind your dr that your not a guinea pig. 
much love,






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