Q and A

Question

What will happen now I have stopped treatment?

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.

21 comments

  1. Roy Trevelion

    Hi Johnny, I’m sorry, and from reading your story I understand your rage. I do hope you don’t mind that I’ve edited it down a little. i-Base is based in the UK, but I hope that these organisations can help in the US:

    1) Local and/or national HIV organisations that provide treatment and other advice. If they are in a large city, there is likely to be a good HIV support group. If not, then national services like Project Inform and GMHCare worth trying first. Most US states have free ARV provision under ADAP, but there are both restricted ARV prescription list and sometimes waiting lists are full. See asap.directory.

    If these organisations are not able to provide directly for your right to be treated with respect, perhaps they could refer you to other healthcare organisations that can.

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