Question
What will happen now I have stopped treatment?
17 August 2016. Related: Adherence, All topics, Life expectancy, Living with HIV long-term, Stopping treatment, Support.
I stopped taking Stribild in Dec. (8 months ago). I told my ID clinic doctor about a month later and he was very concerned. At the time my VL was undetectable and CD 4 count was optimal. I was (am) going through a lot of emotional and financial problems. I’ve had issues for over a year with vertigo and coughing to the point of black outs and mini seizure like episodes.
I know I should return to the clinic (haven’t seen the doc in 6 months) for bloodwork and meds but I’m not sure I care anymore. My question is what could I expect my viral load and CD4 to be like after this time? What can I expect if I just wait it out?
Answer
Hi there,
Thanks for getting in touch and letting us post this online.
It sounds like you are having a tough time. Do you have anyone who can support you and you can speak to?
Although I am not directly familiar with HIV support groups in Canada I can help in finding organisations local to you that may be able to offer help, including your emotional and financial difficulties.
Many people find it hard coping with an HIV diagnosis. Some people come to terms with it soon after, however, many more people take a long time even if they have been on treatment for a while. You are therefore not alone in feeling this way. With the right treatment care and support, many in your situation often find that they keep moving forward and live full lives. A lot of people have been on treatment for over 20 years now and are still very healthy and will live a normal or near normal life expectancy. Often taking ART allows people to be empowered about their status and know that they are doing the best they can for their health and to protect others around them.
If you stay off treatment then your health is related to how quickly your CD4 count drops and how low it goes. Some people can die within a few years of infection, while others can survive for 5-10 years longer without treatment. Very few people die quickly though – HIV complications are usually very slow and debilitating. Also, a few people surprise doctors by controlling HIV without treatment for even longer – but this is very rare.
How quickly your CD4 count drops will depend on the count when you were diagnosed and how long you had HIV before you were diagnosed. Your viral load will increase quite quickly after stopping treatment and after 8 months it could be at levels that are quite high. Therefore, waiting it out indefinitely isn’t a good idea and you will likely keep getting sicker.
Although taking a break from treatment isn’t recommended, everyone is different and can choose what suits them. It can be used as a way to reassess what treatment your are on and what alternatives there are. Are there any particular issues that you were concerned with regarding treatment? Did you have any side effects, or was the medication a reminder of your HIV status? Single pill combinations like Stribild are usually easy to take for most people, but everyone is different and there are other options.
Unfortunately your other symptoms of blackouts and seizures sound serious and regardless of your HIV status it is definitely worth speaking to a doctor about as they may not be related to HIV. If they are link for example to epilepsy this can sound scary but can often be easily treated.
Hopefully you can use this as a stepping stone to speaking with them about your HIV care and how you want your care to be in the future.
Please get in touch with other questions and have a look at the various guides we have on the site that might also help.
I’ve not been taking my medication I found out that I was infected in 2021 August but Im not sick or feel weak.. I’m so confused whether to start my medication or not
Hi Sandra,
If you stop taking ARVs your HIV will no longer be under control. Is there any particular reason why you want to stop?
I’m a 60year old lady don’t have a partner viral load is undetectable can I stop taking arv,s
Hi Shiela,
I’m sorry, this sounds frustrating for you. However, it’s good to hear that you and your kids are healthy.
But if you think there’s been a mistake and that it was a false positive result, you can ask the doctor to do more tests. If you live is South Africa you can contact the Treatment Action Campaign at this link. They can help with local support.
Have you ever had viral load results? If so please tell us what they were.
Hi my CD4 count was on 104 and was put on ARVs but I have been having a healthy life n healthy kids until my separation I tested positive if I was not pregnant once I fall pregnant I test negative I told the doctors they should try n check what’s going on never had health issues but now been taking this tablet n I am in SA i don’t want to keep taking this tablet but I don’t know what to do anymore
Hi Cldys,
I’m sorry to hear this. But it’s important to be ready to tell your husband when the time is right for you. Is there support you can get from your clinic? Or perhaps the nearest clinic could offer support for this.
However, taking HIV treatment (ART) is the way to protect your husband from HIV. That’s because having an undetectable viral load on ART means that HIV can not be transmitted, even if you don’t use condoms at all.
There’s much more info about Undetectable = Untransmittable (U=U) at this link.
And the Partner study showed that there were ZERO transmissions of HIV after couples had sex 58,000 times without condoms when the HIV positive partner was undetectable on ART.
What country do you live in? There could be local organisations that can help with support.
I jst stopped my meds few days ago coz I don’t think I’m ready to tell my husband that I’m on treatment,not really sure that he will accept that,i don’t want to lose him.Reason for stopping is that I I’m afraid to fetch my transfer letter from the clinic coz I think I should go to the nearest clinic to take meds,if i keep on going to clinic he’s going to suspect
Hi Penny,
I’m sorry to hear you’ve been going through a lot. But are you back on your meds now? Are things easier?
It’s not easy to catch HIV from a single time of having sex without condoms. Please see this Q&A about this. And as you say you can relax when you’re undetectable because HIV can’t be transmitted even when you don’t use condoms.
Please let us know what meds you’re taking. If you have access to your recent viral load and CD4 results, please include that info.
I’m in the same situation, have been going through a lot n stopped taking meds for 3 months. im just scared that I might have infected my partner because we have been having sex without condoms. at first I was relaxed because my viral load was undetectable but now I’m even scared to ask him to go for the test
Hi Dee,
It’s good that you want to go back to taking ARVs. What country do you live in? There might be support organisations that can help locally.