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.
Hy it’s been 3 years now I’m HIV positive, I found out I’m pregnant my first born ,I start treatment the,and it was difficult alot after I get a baby I move back home than I stop taking my pills ,my child was negative until they tested him on 1year 6months then they find him positive too.
I’m really depressed I don’t have anyone I can talk to now my son is 2 years not in medicine…
The worst part about my story is that I found out that I’m pregnant again when I was 6 months ,if I go to clinic they want a transfer letter so that they can assist me .
I don’t now what to do I’m scared alot most for my new born and my son
Hi Harvest, I am sorry to hear what has happened to you. You have mentioned that you do not have support from your close ones, has there been support from anyone else e.g., colleagues, medical professionals or support groups?
Your doctor should be able to put you in contact with a support group if they haven’t already.
How are you struggling to take your meds e.g., the thought of taking them, side effects, forgetting? and is your depression being managed by your doctor? or are you seeing someone to help you through this process e.g., a counsellor?
Testing HIV positive can already be a life changing thing. How you become positive is also something that needs to be addressed also. Experiencing depression is not uncommon in these circumstances and it is okay to be depressed. Have you been able to have any of these discussions with the people close to you?
hey everyone by name am harvest’
am looking for advice based on my positive status ;currently i found out that am hiv so ive been struggling to take my meds because of i got diagnosed after my rape incident 2 years ;am currently suffering from depression and i need help and advise cause i dont have support frm my close ones…..
Hi Nomah, I am sorry you are having so much difficulty getting meds. Are you in South Africa as I know this can be a problme there? i-Base is in the UK so I am not able to help directly but please contact TAC in case they can help:
https://www.tac.org.za
Can you not register as a new patient in this province if you say you have moved there now?
Otherwise travelling abck to get your meds might be the quickest option right now.
Hi there I’m in treatment Of hiv frm2017 till now . So this year i started traveling to provinces so now my problem I dnt get helped frm the clinics or hospital..they dnt help me wit my treatment bcz I’m from another province the want transfer letter/file.which i struggle to get. It’s been a week now without taking meds in so stressing ABT wat may hppn to my body..where can I buy the meds instead of dealing wit rude ppl from government hospital/clinics .
Hi Yvonne, have you been to a doctor about these symptoms? and why did you stop taking your medication?
Hi,I’m concerned about my health,I’m Hiv positive & I stopped taking my ARVs almost a year now,ago,I have this itchy skin, blood spots when I’m coughing & now I start having red pimples on my body,who looks like ringworms
Hi Lungile, why did you stop taking your medication when you wen to Zimbabwe? Do you know your current CD4 count and viral load?
How long have you been experiencing these headaches? and have you noticed any other symptoms? Headaches alone are not a sign of you dying but if they continue you should speak with your doctor.
Hie l diagnosed with ttp last year for a month and that’s when l started taking my meds it was early July when l started…… So l went to Zimbabwe December that’s when l stopped
I was afraid of wat will people ,..so now l am having this terrible headache are these the symptoms of maybe me dying
Hi Sindy – thanks for posting – and really important that you did. Can I ask why you stopped your meds?
HIV meds protect your health and immune system even if you don’t feel well. They will mean your can live a long and healthy life. Withont being on meds your immune system can become weaker and then you can become ill.
Please contact your doctor to talk about this. Starting meds again and will be much better for your long term health.