Question

What is the point? All I do is create utility bills. I have stopped ART.

2 April 2022. Related: Adherence, All topics, Life expectancy, Living with HIV long-term, Opportunistic infections, Stopping treatment, Support.

How long will I live now I have stopped taking my medication?

I’m hyper sensitive to all drugs and have gone through hell, all my life. 7 different combinations of medications since 2016, peripheral neuropathy since summer 2017 (caused by darunavir) – pregabalin increased to 175 mg a day and using more regularly.

Tramadol 2 to 3 times only in a month! Paracetamol and ibuprofen to ease endless hangover headaches every day; limited balance, brain fog, short term memory all but gone. Many falls since 2017. Jan 2018 after suicidal episode I had an authorised treatment break to September 2019. Biktarvy up to February 2022.

Now 6 stone heavier, deeply depressed. All but 2 friends no longer contact me. Bed bound! Any support I had from my mentor withdrawn by them Jan 2019.

No GP support. No mental health team support. Bare minimum from HIV clinic.

What is the point? All I do is create utility bills.

Answer

Answer: Josh Peasegood

Hi, I am sorry to hear that this is how you are feeling. For how long have you been feeling like this?

It is hard to say how long you will live without taking your medication. Each person is different and how their body responds to HIV will be different. Some people may only live a few years more while others can live for more than 10 years onwards. Stopping medication lets HIV impact your immune system and you become vulnerable to other infections and different health complications.

How were you handling Biktarvy? I understand you have mentioned that you are hypersensitive to all medications but was this tolerated any better than any of your other combinations?

Is the pregablin you take helping with your peripheral neuropathy? and is the tramadol for the same reason?

You have mentioned a number of symptoms, do you know if these have all been caused by HIV and/or the treatment used to manage it? Perhaps I am saying something you have heard before, but have you spoken to any doctors about these symptoms and any other potential causes?

How did you feel after the treatment break? and did you feel any different after restarting your medication?

I can sympathise with how difficult you are finding everything. An HIV diagnosis alone is difficult, though unfortunately it sounds as though you are going through more than most. Have you had any mental health support since surviving your suicidal episode in 2018?

The number of medications you were taking, alongside your number of conditions can lead to you feeling like a utility bill. What means that you’re not is that you are alive and sent this email. Is there anyone else you can contact to find some support? Life is more than a number of health conditions and medications.

I am sorry for the number of questions in this email, I am only asking to gain a better understanding of the situation.

The Terrance Higgins Trust is a place of support for people living with HIV.

Mind offers support for those with mental health difficulties.

and if you are feeling suicidal please call an ambulance or call Samaritans on 116 123.

I will also send you a personal email so we can follow-up in more detail.

Josh.