Question
Can I get injectable ART in the UK – and do I really need ART?
6 February 2023. Related: Access to treatment, All topics, CD4 and viral load, Changing treatment.
Dear i Base doctor, I have been so sick with many illnesses when I was on a combination with TDF/FTC (Truvada). We changed the combination but I was still getting sicker.
I came off tablets for a year and found that I was so well after about 6 weeks after stopping HIV drugs . After 25 years of being so ill it was amazing to have my body back to normal. Eventually after covid-19 disappeared I was able to go back to my London doctor.
He put me on Biktarvy but I soon started to get ill again. Many of the same illnesses came back. He was hoping to put me on injectable ART, but the hospital board said no as It cost more. Now I am off tablets once again and I am start to feel better. But I like to know what is the medicine I’m allergic to so I can keep away from it?
The other question is what should I go back on if there is anything?
I do have a very weak virus as even after stopping for one whole year it only went up to 500 copies . I was diagnosed with HIV colitis but I think this was only the tablets causing the pain in the stomach. Hope you can help.
Answer
Hi there
Thanks for your questions which are very interesting, but also quite complicated.
I am not a doctor though. This is just an information service. The info we provide is just to be used when talking to your doctor about your options,
Also, the info below is based on only having brief details about your HIV history. Your doctor will have your full medical notes which might have other reasons for you current choices.
The injectable combination should now be available throughout the UK. This uses cabotegravir and rilpivirine injections every two months. Although you need to have a reason to use the injections, this can include difficult side effects with current drugs,
HIV drugs are now bought centrally, so access should be the same for everyone. Your hospital should not use to price as a reason not to give this to you.
Your treatment history shows you might be unlucky and have problems using TDF/FTC, Although this is rare, some people might not get on well with either drug. As you had similar problems with Biktary, perhaps it is the FTC (emtricitabine) that is difficult,
This might be a reason to use a different combination, for example, dolutegravir/lamivudine, Or to use injectable ART.
Which hospital are you being treated at? Please email me again with more details as it will be easier to talk more offline.
Your second question is complicated because your viral load remained so low when not on ART. In this case,UK guidelines include two options for whether or not you personally might need ART.
- In general, the guidelines say everyone should benefit from ART. This is even when CD4 and viral load results are very good. This is because HIV might be causing problems in ways that are not shown by these blood tests.
- In rare cases, it might be okay to delay ART. Instead, the CD4 and viral load would be monitored more carefully. This involves knowing a detailed history of your CD4 and viral load results. It normally involves viral load staying undetectable off-ART, but might also be okay if viral load stays very low.
In summary…
- It is good that your doctor is trying ART that doesn’t include TDF/FTC.
- This can include injectable ART. i-Base can help if your hospital is using price as the reason to not provide this.
- If your viral load has always been very low, including when not on ART, you might be able to stay off-ART for a while.
- If not on ART, viral load should be checked every 3-4 months. It would be good to decide in advance when you might need to restart. For example, if viral load reaches a certain level.
- If you partner(s) are not HIV positive, not being on ART means either using condoms or that your partner(s) need to be using PrEP.
Please let me know if you want to talk more, including if you still have questions and on getting access to injectable ART.
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