Question

I stopped treatment in December and I'm not feeling well.

17 April 2012. Related: All topics, Living with HIV long-term, Support.

I decided to stop taking my treatment in December, I thought it would be better for nature to just do its work with me. I’m 27 and been + for almost 3 years now, I went from a negative test to a positive test then starting on meds within 11 month period. I cant remember my last counts off the top of my head but I think my VL was under 50 just and my CD4 was around 500 the highest I’ve ever known it to be since my discovery.

These last few weeks I’ve been feeling incredibly drained all of the time, not wanting to do much and I’m unsure if its related to this or an accident I had last year. In the evenings I tent to feel as if I’m coming down with a flu and have a slight temp of around 37.8 but this only comes on at night.

Answer

Answer: Rebecca McDowall

Thanks for getting in touch, I’m really sorry to hear you’re feeling unwell. I’d really like to help if you could tell me a bit more about your situation.

Why did you taking treatment? What led you to that decision? Sometimes when there’s a lot going on in your life- like problems with family, friends or work-taking treatment for HIV can seem like the least of your worries. You mention in your email that you had an accident last year, was this something that affected how you felt about taking your HIV treatment?

Testing positive and starting treatment within a year must have been a lot to deal with, especially for somebody so young. I’m from Scotland and I know that although there are great organisations this might still have been hard. Sometimes it can help just talking to somebody else who is in a similar situation and can understand some of the issues you are dealing with.

A lot of people stop taking HIV medication for different reasons and it’s not uncommon to want to let ‘nature take its course’. But this can be really unpleasant and drawn out. The treatments which people may have to take to manage the symptoms of HIV can end up being much more difficult that the ARVs which are used to treat HIV itself

I was surprised that you stopped given how you had such a great response to treatment. Everything that I have read about life expectancy means you could plan to live into your 70s or even older.

When you stop treatment your viral load will go back up to the levels it was before you started treatment. This can be like being infected all over again for the body and you can feel tired and like you’ve got the flu because your immune system is fighting so hard again against the HIV.

There are a lot of different options available- both in types of treatment and if you’re not ready to go back onto any treatment just now. Even if you’re not taking medication it is important to monitor your CD4 and viral load to see how your body is coping. Are you still attending the clinic?

I’d really like to help and I’d be happy to talk through various different options with you or just to discuss how you’re feeling if you think that might help.

I look forward to hearing from you.