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 am just tired of the judgment. Judgment of my primary care doctor, support staff and the administration for I once requested that a new primary care doctor to be assigned. I don’t need the lectures.
So doctors, respect us, respect me. I really can’t take being alienated by the only regional HMO (Health Management Organisation).
One doctor even told me the only way I would ever get acceptable care was if I moved to Seattle, SF or LA. Well, that’s beyond my budget. Trust me, I would love nothing more than a change in locale.
Hi Tanky,
Consultants who work in HIV are usually HIV specialist doctors. They are able to deal with HIV related issues. Though they may have a broader knowledge they won’t be experts in all types of medicine, this is why its important to see different types of specialists. If you’re having problems with your eyes, then you need to see a specialist eye doctor. This is the same for the issues with your legs.
If your HIV doctor isn’t being responsive, then yes you should take you care someone else. Lots of people do this if they aren’t happy with what they are getting. If she’s being rude, make a complaint about her. You are after all entailed to be treated with respect and dignity at all times.
Though you don’t want to talk to someone, talking might help. And from the sound of things your HIV is basically under control. You viral load is nearly undetectable.
I like how people say take your hiv medication and you will be fine . That is a lot of carp I’m in pain every day with my legs and they are getting weaker . and now I have got eyes floaters and really bad dry eyes . support well I hate talking to people in the first place because when you tell them things they do not listen just like my hiv doctor . the only thing she will.say go see the eye doctor’s and the primary doctor and I have told I have seen them so see thinks that they are not doing there job and she wants records from them . to me she is not doing her job because I have told her all the symptoms I have and this is what comes out of her month my other patients don’t have any problems . I asked to see a different doctor in the office and I was told I would have to go somewhere else she is a rude doctor after this visit I will be finding me a different doctor . or I will just stop all meds because it is not helping me at all I can’t do anything so what’s the point of taking the meds if they are making me worse off. I just wish I was not here anymore and I would not be in pain every day . my cd 441 and viral 80 then why am I feeling sick every day .
Nikki I have been living with Hiv for 21 years. If your not ready to tell anyone don’t, however please keep taking your meds and find a support group. It doesn’t matter how you got hiv the important thing is that you remain healthy. Which you will till your old and grey. But find a group and you’ll meet others who are experiencing similar things. Hang in their it’s not like years ago. Your not gonna get sick and die anytime soon, you’ll live a long wonderful life, just get the support and def get a primary doctor, find an agency to help and find a passion and go live it….
2015 my CD4 count was 800, 2016 it was 844, last week it dropped to 440 now the doctors says it could be treatment failure. I sometimes skip 2 days once in a while, so they say I will start with second line arvs, I really don’t want to start with second line can’t I use 1st line for the next 3 months then check my CD4 count again then if it’s dropped I can start with 2nd line please help I’m afraid of 2nd line.
Hi Conney,
Please see Q7 for what will happen to you if you stop meds:
http://i-base.info/qa/what-are-the-most-asked-questions
If you’re having problems, you may need to change. This is something that you’ll need to discuss with your doctor.
I was diagnose two month back n taken my meds ever since but they are not so friendly as I become weak I take energy boosters n sphycologically its drives me crazy sometimes I get panic attacks and get suffocated,I’m thinking of stopping the meds.what could happen if I stop?
Hi Lira,
Even if you skip 2 days every now and then its unlikely that this will cause treatment failure. However, this does depend on what meds you’re taking.
The drop in CD4 could be an indication that you are experiencing resistance to your meds. However, it could also be a simple CD4 blip. Blips and fluctuations are common, as the following link explains.
http://i-base.info/qa/424
Another test that would help to understand how you are doing is a viral load test. If this hasn’t been done, is there the possibility to have one done? This test will be able to tell you if your CD4 count drop is a blip or a sign of treatment failure.
With regards to changing to second line. Though this may seem daunting, the ARVs are just as good. They do what they need to do which is control your HIV. There’s more about changing meds here:
http://i-base.info/guides/changing
Before you change, that is if you need to it would help to follow what’s in the above guide book and also to have your CD4 and viral load checked.
Hi Nikki,
No one can make you take meds, however if you want to control your HIV its very important that you continue to take them. This is because only ARVs can control the virus.
With regards to how you contract HIV. It is possible that you contracted it in the way that you described, even if the risks are low. When you were diagnosed, were you told what your CD4 was and your viral load?
I can’t really tell you what you should do about telling your family, this is because I don’t know them or you. If you feel that they would judge you or not support you, then it may be best not to tell them until you’re ready.
Hi I was diagnosed with the virus 3 months ago, my family does not know. They are very against people who are positive.
I’m thinking about quitting my meds.
I have never had unprotected sex and condoms I’ve used never broke but nurses at the clinic don’t believe me when I tell them. I don’t know how I got HIV.
I’ve told my partners and went to test with them and they are all HIV negative. However I was attacked n fought back resulting me bleeding and the person who attacked me bleed on my wound. But my family would assume I was misbehaving. Pls help