Question
What happens if I stop taking treatment?
31 August 2016. Related: Adherence, All topics, Changing treatment, Side effects, Southern Africa, Stopping treatment.
What are the side effects if someone stops taking her medication for HIV?
Answer
Thanks for your question.
May I ask why you are thinking of stopping? Many people find adhering hard at some in their lives but there are ways to make it easier. Likewise if you are suffering side effects – you can switch to meds that better suit you.
Several years ago a very large study called SMART reported that stopping treatment increased the risk of serious complications. These included a higher risk for heart, liver and kidney complications in people who stopped treatment and also a higher rate of some cancers.
If you decide to stop treatment, your viral load is likely to rebound within a few weeks. If you stay off treatment your CD4 count will start to drop over the next few months. When this happens the risk of developing other infections and getting sick increases.
How quickly this will happen though varies a lot. The lower your CD4 count was when you started meds, the quicker your CD4 is likely to fall without ART.
In the SMART study, most people who took a treatment break did pretty well for a short time. However, most people were not able to recover their CD4 count to earlier levels even 18 months after they restarted treatment.
Please talk to your doctor about who you feel. It is not generally good to stop treatment. It is definitely not good to do this without first talking to your doctor.
Please let me know if you have any other questions.
Hi can I be worried my partner is taking HETEMCIT I’m not sure what are those for we have been dating for 4 months now should I be worried cause we don’t use protection
Hi Milli, do you know how much weight over the last 3 months you have gained?
How long had you been on treatment before stopping treatment? and do you know what your current viral load and CD4 count is (or when you last had a test done)?
Gaining weight centrally is not a specific side effect of stopping treatment. Have you noticed any other symptoms e.g., purple stretch marks, feeling more tired, noticing hair in different/new places?
Treatment is used to prevent HIV impacting your health. Even without a partner it is still important to take treatment. HIV medication will suppress your viral load and prevent it from damaging your immune system (CD4 cells) further and allow your body to naturally recover. While it is great that treatment can protect your partner, HIV treatment is most importantly taken for yourself and to keep you well.
Would you consider going back on your meds? and have you spoken to a doctor about this new change in weight?
I stopped to take my medication because I don’t have partner for many years and I gain a lot of weight on my stomach it’s about 3 months since I left my meds
Hi Lalè, thanks – and good you are now doing well and are back on a new combination. Being undetectable before means that your meds were still active and you didn’t have drug resistance. This is really good news for your new combination too. It is really liekly that you will soon become undetectable again and the two months off-ART will not be important.
I was undetectable for 6years but recently had to stop taking my medication for 2 months because my liver was failing. My dr had to change my meds and that took a while so I have just started new medication. Will I still be undetectable even though I was without meds for that long? Or how long before I become undetectable again with these new meds.
Hi Ray, stopping meds for two weeks affects different people differently. To be able to give useful info it would help to know roughly high low your CD4 count ever went and how high your viral load was before your started treatment. Depending on where you are travelling to have you thought about contacting a local HIV treatment centre or HIV organisation in case they can help.
Hello,
I am on travel and have accidentally left my HIV medication at home. It will be about 10-15 days before I have access to the medication again. What are some of the possible negative effects?
Please email me.
Thank you!
Hi Joan, where are you travelling? and what is the treatment you are taking? do you know your viral load?
In most cases a single break from treatment is unlikely to cause any problems. After 2 weeks it will be advised to have a viral load test a few weeks after restarting treatment. This is to make sure that your treatment is still working and that your viral load is being suppressed.
In some countries you will be able to access emergency medication e.g., in the UK you can make emergency appointments at sexual health clinics to access treatment.
In rare cases it is possible for resistance to develop to your current treatment (this is why the viral load test is advised). In these cases you would be required to switch the type of medication you are on to continue to suppress HIV. Missing treatment on one occasion is unlikely to happen and you should not be concerned about this.
While not on treatment you cannot rely on U=U due to possible rebound and transmission risk to others.
Hello,
I am on travel and have accidentally left my HIV medication at home. It will be about 10-15 days before I have access to the medication again. What are some of the possible negative effects?
Please email me.
Thank you!
Hi Peter, when not on treatment CD4 count will fall and viral load will increase. It is not possible to say how quickly your partners CD4 count will drop. Some people can have a CD4 count below 200 only after 2 years whereas others can have a CD4 count above 500 after 15 years. HIV responds differently in each person and this is why it needs to be regularly monitored.
As your partners CD4 count falls they will be at risk of other illnesses. These are called opportunistic infections and is explained here: https://i-base.info/ttfa/section-1/12-cd4-count-cut-offs-and-the-risks-of-opportunistic-infections/
As your partner has a high viral load, there is also risk of transmission to you if you are not using a condom/not being on PrEP. Have you had any discussions with your partner as to why they are not wanting treatment? would they be willing to talk to a doctor about this?
This graph shows how CD4 count and viral load changes over time without ART: https://i-base.info/ttfa/section-2/14-how-cd4-and-viral-load-are-related/
Was your partner experiencing side effects while on treatment? Do you know the name of what they were taking?