Question

My mother stopped treatment due to side effects…

13 September 2012. Related: All topics, Changing treatment, Side effects, Stopping treatment.

Hi there

My mother is HIV positive, she is 47 years old. It’s likely that she contracted the virus in 2002 but she was only diagnosed in 2008. She started taking ARVs in 2008 when her CD4 count was 200 (I’m not sure which ones she took) until 2010 when she started losing her body shape, she lost body fat from her lower body and gained a lot of fat around her belly, back and upper arms. She didn’t tell her doctor that she had stopped, she was hoping her body will return to normal.

She would go to on the day off her appointment but not take her pills. We live in a society where there’s still a lot of stigma attached to HIV and people tend to notice you’re on drugs because of the change in body fat. Throughout this time her CD4 was on a steady increase and her viral load undetectable, possibly due to lifestyle changes.

Lately she’s been very sickly, and she was also diagnosed with diabetes. She has been taking her ARVs for the past 2 weeks (the doctor changed the drugs). However her doctor does not know that she once stopped, he did notice her deteriorating health though.

Now my question is will these drugs still help her immune system? I once read that stopping treatment causes the virus to be immune to drug use in future. If they don’t help her what are her other options? And lastly what supplements can she take to aid in her immunity?

Apologies for the long text.

Answer

Answer: Simon Collins

Hi there

Thanks for your email and for the detail which makes it much easier to give an individualised answer for your mother’s situation. Your mother is lucky to have you looking into this for her.

I am sorry that you mother also have difficult with side effects. This is likely to be a side effect called lipodystophy. Please see the links below for more information. It may also be related to a drug called d4T (stavudine). This was used more widely in 2008 than it is now.

Without know the names of the previous meds or the meds your mother is taking now, it is difficult to comment on some of your other questions. Usually though, if someone stops treatment completely (rather than going on and off treatment several times), then next drugs they use will have a good chance of working.

It would be good for you to support your mothers in having a discussion with her doctor about the last few years off treatment. Her doctor may have been making treatment decisions that might be different if he knew this.

It is also really important for the doctor to understand how traumatic the side effects were, both for your mothers care and for other people that are seen at the clinic.

It is good that your mother in back on treatment now. Specialist advice and support over diet and exercise can help with some types of diabetes and might also help with the body shape changes.

More information from the side effect guide is at the pages on lipodystrophy, on fat loss and on fat gain.

Good luck and I hope things go well on the new treatments.