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.
Hi Cliffton,
I’m sorry to hear that you’re having a difficult time. Is there someone that you can talk to? Or a support group near to where you live?
I can’t answer your quesiton. This is because know one can say how long a person will live for. However, without ARVs, your HIV won’t be controlled and eventually you will get ill. This however, can be prevented if you restart meds.
ARVs in most countries are free. Where is it that you live? If you could tell me I may be able to help you access medication, and for free.
I’ve been HIV positive now for 2 years. My CD4 count was 600 when I diagnosed. I have stopped taking meds 6 mouths ago due to a lack of support and finances. I’m getting pain and lumps in the back of my neck and small sores on my head I feel really tied and sleep a lot. How long will I live?
Hi Boniswa,
Before restarting your treatment did you talk to your doctor? Also what meds is it that you’re taking? And do you know what your CD4 is? When you started treatment before, did you have any side effects? If yes, what were they?
I just restarted my treatment after a month.This is my second day.I feel different,my boby is very tired.Is this normal?Or am going to sick?
Hi Lira,
If you can, you need to go and see your doctor for some more. If that’s not possible because you might be travelling, is there a hospital close to where you are?
A week without meds is quit some time. However, if you’re taking meds that contain efavirenz then you may be ok. This is because research has shown that you can take efavirenz less often. Please see here for more info:
http://i-base.info/htb/30601
What’s important is that you take the as soon as you can.
I’ve lost my bag with my treatment in it. I’ve been a week without taking my meds,what will happen?
Hi thandi,
There have been some recent studies done that show that with certain ARVs you can miss days. A recent French study reported surprisingly good results from people routinely taking only 4 days worth of mends a week. See:
http://i-base.info/htb/30633
If your combination is Atripla, then this two-year study showed people did pretty well taking meds only three days every week:
http://i-base.info/htb/30601
From what I know there are no studies that have gone up to 7 days. So you’ll need to access meds ASAP. If your having problems accessing meds due to money, where do you live?
Hi i am in a similar situation as John but with me its finances though its just few days without treatment. I was told it is doable but as long as does not exceed 7days. i just want to confirm is it true,i am really scared as i thought i will never default.
Hi John. One of the key principles of advocacy is just to make sure that people have good quality information to make their own choices. Another is to then respect those individual choices, one of which is always the option not to take meds. I made a couple of edits to the original answer above that mean you might want to quickly re-read it. Good luck with your choices and we are always here if you have other questions or want to talk again :)
thanks for answering
think i’ve had enough now though so see ya
be well