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.
Hello Nomatter and thanks for getting in touch.
I am very sorry to hear you are having such a difficult time getting your medication and have to go through so much stress.
I would urge you to call or e-mail your clinic and explain what difficulties you are faced with in reaching them.
Missing your medication for 4 months is not ideal.
How this will affect your health depends mostly on your CD4 count now and how your body will respond.
Some people are ok, others are not.
Might be a good idea to speak with a doctor as you might also need prophylaxis as protection from opportunistic infections.
You will also need to use condoms when having sex, especially if your partner is not using PrEP
Hie please help me I’m hiv positive on medication I’m a Zimbabwean in south africa I go to clinic to collect my meds they chase me because of this xenophobia thing they didn’t give he my medication now I’m worried I’m going back to Zimbabwe in 4moths time am I going to die or sick if I skip my hiv medication for 4 months
Hello David and thanks for getting in touch.
Rash is one of the things we always want it to be reviewed by a doctor.
Stopping your ARVs might be something you can do now but your doctor needs to know, to know what to prescribe in the future that you will not struggle to take.
Please go back to your clinic and discuss this.
Hi am David l started taking ARVs but am experiencing severe rashes so I stopped talking medsl started taking meds for 4 months now and I stopped due to the rashe, the rashe have minimizing now
Hi Phindile, thank you for getting in touch. i-Base is an information project in the UK but I can suggest a few things that might help.
I do not know which country you are in and how HIV meds are provided, so it is important to contact an HIV organisation in your country for support. They can hopefully help connect you to an HIV clinic where they can provide care and treatment both for you and your son.
If you are six months pregnant now, then the clinic helping with the pregnancy should also be able to help with HIV treatment for you immediately, with or without a transfer letter.
You didn’t say why you stopped HIV meds before, but restarting them now will be important both for your health and for your new pregnancy. They should also help with treatment for your two-year old son.
Please go to the local clinic first and say how this is urgent. Please ask for support to contact your original clinic too if they need this and it is too far for you to visit.
Doing one thing at a time will slowly get you through this and it will be okay.
Please email me in confidence if you want me to help:
questions@i-Base.org.uk
This will be easier to talk about by email than having to do this online.
I promise there are lots of ways to help get things easier :)