Question
What is my risk from stopping meds I’ve been on for 10 years?
2 June 2016. Related: Adherence, All topics, Children, Living with HIV long-term, Stopping treatment, Support.
Hi, I am a HIV+ woman aged 21. I have been on my medication since I was 11 years old and on second-line from 2008.
My problem is that I stopped taking my medication in January. My doctor does not know. My viral load is 30 and my cd4 is 836. I work at a clinic for kids living with HIV and TB.
I feel great but sometimes bad I ask my self what I am doing to my self by not taking my medication especially when I am on second line but I continue being ignorant I don’t take my medication what must I do?
Answer
Hi
Thanks you for your email and for allowing us to poost this online.
Your situation sounds like one shared with many other people who started treatment when they were very young. Many young people talk about a strong sense of wanted to try life without treatment.
Very occassionally there are reports where people have an immune response that controls HIV without treatment. This is good an an example but very rare – perhaps only 1 in 1,000 or even 1 in 10,000 people see this.
For everyone else – and this is likely to be your situation – viral load rebounds within a few weeks, quickly reaching high levels – and the CD4 count steadily falls to where it was before you started treatment.
This is the reason that stopping treatment is not recommended.
Your doctor will care greatly about your health – especially as you have done so amazingly well for more than ten years. Please find time to tell your doctor about how you feel and that you have stopped treatment.
Your doctor can help support you for the reasons you stopped. Starting treatment again now is likely to be very important. Although you feel well, you need to check your CD4 count as any drop will have put you at risk of serious iunfections.
If you are lucky, this interruption will be okay. Restarting treatment should still work again to get your test results back to safer leveos again.
I left a few of your personal detials out of this question, so that it stays anonymous, but please contact me personally if it is useful to talk in more detail.
Hi Penelope,
Stopping treatment is not a good idea. It means that HIV will bounce back and become detectable.
But being on first line treatment means that you can take other meds if the old ones have stopped working.
What are the reasons for not taking the meds? Can you talk to your doctor about it? It sounds like you have a lot to cope with at a young age. It’s important to ask your doctor or clinic for some support to get back on treatment.
Hi, I’m 23 years old and I have one child. I’m HIV positive and I’ve not been taking my treatment, and HIV has been increasing. I’m still on first line treatment. What I must I do?