Question

Can I stop ART if I am depressed?

20 October 2018. Related: Adherence, All topics, Living with HIV long-term, Stopping treatment.

I was diagnosed with HIV in 2005 and my doctor put me on HIV meds, along with others and vitamins. The amount of drugs were overwhelming. It’s getting harder dealing with the medication, arguing with.doctors, many visits to the hospital. I feel like a train wreck every day to cope with the depression and stress that is combined.

I was taking Complera and try to stay up on the newest drugs to live longer and now on Odefsey. I am also on antidepressants and other meds to deal with side effects and depression. I really want to get off everything. 

This is my 13th year dealing with this and I’m not doing well. I have no quality of life and I have turned into a recluse. I used to be active, extroverted and the life of the party, now Im just depressed and shut myself off from everyone. I’ve tried counselors and that has not helped along with my regimen.

My T-cells are 1100 and I’m undetectable, so it’s keeping the HIV at bay but what kind of life is it if your not living. I have a great job and wanna keep it but traveling is getting very hard for me every year. 
I am single and do not date anyone because who would want somone like this. I really want to quit my meds and rather have 2 or 3 years of quality life, where I can enjoy the world more often, see the trees, people, and love myself again.

That daily pill everytime I take it just makes me feel like a looser, someone that  I have never been. I usually always bounce back but it’s getting harder ever year. If I stop my meds and let nature take its course how many year will I have?

Answer

Answer: Simon Collins

Hi there

Thanks for writing and I am sorry that you are having a rough time. You are not alone in how you feel. Many people who have been living with HIV for a long time unfortunately have similar experiences. But luckily this is not the only option as it is is also just as easy to have a happier life.

It sounds like your difficulties with HIV have steadily become more difficult – even though now HIV itself is not causing you any problems. Your CD4 count is better than normal and viral load is so low that it is not doing any harm. You are also no longer any risk to your partners.

Instead of this single tiny HIV pill each day being a negative thing, it is really positive. It only takes 30 seconds to take each, it means you can get on with the rest of your life without worrying about HIV any more.

If you are depressed though, changing the way you think can be difficult, which is why counselling can often help. Even if this hasn’t helped you so far, it might be good to try this again. Otherwise, the logic of your thinking, is that everyone taking any medicine for any illness should be depressed.

The whole point of meds is to help out health. As HIV positive people we wanted effective medicines – and this has become the new reality for HIV.

I know your current way of thinking makes it difficult to be positive and see this, but please talk to your doctor about how you feel.

Also, importantly, there is a chance that Odefsey might be contributing your your emotional feelings. This means that your doctor could try an alternative combination.

Although Odefsey generally has few side effects, some people reported mood changes in the original studies.

Stopping your HIV meds is unlikely to help. If they are causing side effects however it would be better to change another combination. Although you have a very strong CD4 count, this would steadily drop if you stop taking meds. Your viral load would rebound very quickly and this could easily make you feel worse again.

Maybe try to find something in life that still makes you feel good. Or something that connects you to the times when you felt more in control. Holding on to that as a way to get stronger each day might help.

This might be something simple that you see outside when walking – the sky, the sun, the tress, the way someone is dressed or how people interact. It might be a simple as good coffee, the way you cook eggs for breakfast, or something you read or see on tv.

These can be a basis for yoga or meditation or mindfulness etc which are all ways of finding time to experience the present time you are living in. Even if you feel trapped without options, they will be there for you. Perhaps start with things that make you feel less trapped.

If the counselling didn’t work before, it might be that person was wrong for you. If the antidepressants are not helping, then working with your doctor to steadily reduce the dose might also help. As with HIV meds though, it is not good to stop without specialist support.

I am sorry there is limited help i-Base can provide online, but I hope things get better.