Question
As I am missing doses, what can help or should I stop?
15 June 2011. Related: Adherence, All topics, Changing treatment, Resistance.
I’ve been on meds for just over a year after finding out last year I was positive. I have been missing doses of my meds in the last month I have taken them 3/4 times (75% of the time).
I’m currently thinking off stopping the meds full stop as I have issues in my life that are going on and when I get upset and things this is when I stop taking my meds.
If I stop I now I will get ill again? Some people have said to me that I will die within 6 months. Is this the case? Is there anything I could do maybe to stick with taking them?
Thanks in advance
Answer
Thanks for posting a question and allowing us to post the answer online.
Your questions are all important and deal with lots of different issues. As you can see below I would need more information about your personal circumstances to provide information about some of the medical questions.
In general, stopping treatment is not recommended unless there is a medical reason to do this. This could however include adherence problems to reduce the risk of resistance until you are in a stronger position to restart treatment. This would only be a last resort, and would depend on your HIV history and current meds and test results.
The risk of a treatment break, in terms of how quickly your might become ill, depends on how low your CD4 count went before you started treatment. It also depends on your history of HIV-related complications and how high your viral load was before treatment.
Usually, viral load will rebound to the pre-treatment level within 2-4 weeks of a treatment break. Your CD4 count would also be likely to drop pretty quickly over the same time, perhaps also to your pretreatment level. For both these reasons, if your CD4 count was ever below 200, it would be better to look at how to support you improve how you take your meds.
This would probably be the preferred option for most doctors, but it depends on your individual circumstances. You need to talk this through with someone without worrying about what they think. Your doctor needs to know how your life is in order to be able to help.
The risk of continuing with only 75% adherence also depends on the details of your life. If you miss one dose every four days, this is different to missing one whole week every four weeks. The risks of resistance are different, so you need to talk this through.
The risks are also different if your viral load is currently undetectable (in which case you have been lucky and not yet developed resistance) or if it is still detectable (in which case you could already have resistance. In the first case, your doctor might consider switching to a protease inhibitor based combination if you are currently using an NNRTI (evafirenz or nevirapine).
Because you already recognise that other issues in your life are connected to missing meds, a health advisor, counsellor or your doctor could talk through these issues with you. You need to get to the point where you recognise and overcome the pressure to miss your meds. This involves accepting that however difficult your life becomes at times, your long-term health is more important, and that you are worth getting the best chance at treatment.
This is much easier to reach if you have the help and support from other people.
I hope things get better. It is important that you have recognised this as an important problem, please involve your doctor in how things really are.
Please let us know if we can help further, or again in the future.
Hi Simon
I’m sorry for this late reply to your post as I have only just been able to check the posted comments to the site.
I’m also sorry that you are having a such a rough time and that this is a difficult period.
Because your pre-treatment CD4 count was less than 100, coming off treatment has a real potential to impact on your long-term health. It doesn’t help for your family to shout at you – that sounds stressful – but it would be good to see a health advisor at the clinic or at GHT where you can talk this through with someone.
If the second combination worked well for you, it would be good to see if you could get back to this.
Don’t worry about your next appointment being due in August. Give you clinic a call today when you read this and explain you need to see someone earlier.
If it would help to talk this through, please give me a call on the i-Base phoneline: 0808 800 6013.
Hi,
Thank you for your reply.
Before I started treatment my cd4 was 77 and viral was 112,000. I did get a undectable viral load back in Feb and cd4 of 220. Since then I missed my meds sometimes for 5 days out of the 7 and lately its been 3 weeks without my meds.
I know at present I have another chest infection this is the 3rd one in the last 2 months! My gp is aware of this. As spoke with him on Friday 17th as I broke down in the room. He didn’t offer any consultation as I had visited him as I was worried about my dad who is an alcoholic and has lost everything including his wife on the Thrusday who he had been married to for 37 yrs. He also is homeless come the 25th june….
As you can see these are the pressures I’m facing which I will be dealing with until this get sorted, I also suffer with depression and 2 months ago did an OD ….
I have had trouble accepting my HIV result and was only offered counselling with the GHT back in feb, but I didnt go to the appointment because of the issues. At present I feel a break in my meds would be a good start until I have resolved the issues but friends and family are shouting at me because I’m not taking them which is adding more pressure, but if I do take the meds I was feeling sick and tried on them.
I did start on the first line meds the one where you take 2 tabs and after a period you take one – but I stopped that as it changed me and I looked like I was dying. I was also on septrin and had reaction to that. I stop these for 3 weeks before going back to the clinic.
I was then put on Truvada, Novir, atazanavir and dapsone which I was good one but its all gone to pot now – i’m not due in the clinic till august now.
Thank you for answering my question.