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stopping HIV meds
Jul 1, 2014

I've been HIV+ 30+ years and am seriously considering stopping my whole HIV regimen. Just because I'm sick if taking and feeling like shit most of the time. My neuorpathy is out of control and has been so for over 15 years. Now it looks like a wheel chair is the next step. I'm just fucking done. my t-cells sit around 1,000 and have been undetectable for over 10 years. What can I expect to occur?

Response from Dr. Young

Hello and thanks for posting.

Sorry to learn of your health challenges. Clearly, the goal of treatment isn't just having a normal CD4 count and undetectable viral load- it's also to maximize the quality of life.

While it's preferable not to stop HIV medications, there are plenty of circumstances where taking a break might be the better of options.

In your case, it's essential to know if your HIV meds are responsible for your symptoms- and from what limited information you've shared, it's difficult for me to determine this. Peripheral neuropathy is particularly difficult to manage- and though clearly associated with the medications that we used ten or fifteen years ago, is no longer associated with most modern HIV meds. Because of this, stopping or changing your HIV meds may not be of benefit.

That's not to say that aggressive management of neuropathic pain can't help- on the contrary. I'd suggest working through these options before stopping HIV meds; if you've not had an evaluation by chronic pain management services and mental health services, these can be particularly helpful- they have been for many of my patients. Complementary health approaches, like acupuncture or massage therapy can be helpful for some people too.

In the short term, if it's important to know if stopping your meds will make any difference, there's little short-term problems (though your virus will return in a matter of a couple of weeks, and CD4s will decline). It's important, to work with your provider to monitor your symptoms and health closely if you choose to stop. What is key is not to loose your linkage to care while stopping meds.

I hope that's a start. Please feel free to write back, BY

Response from Dr. Fawcett

Thanks for writing. I agree with Dr. Young that discontinuing your medications may not impact your distressing symptoms. I too have struggled to control neuropathic pain with varying degrees of success and, frequently, no relief at all. I have found that mind-body types of intervention such as deep breathing, progressive relaxation, and meditation do help to a significant degree. I was astonished to discover that my neuropathic pain (or at least my ability to tolerate it) was, to a degree, associated with my levels of stress.

Now to the deeper concern in your question, which I read as just feeling tired of the struggle. I understand the weariness that comes from three long decades of living in crisis mode. When there is physical discomfort this becomes even more overwhelming. I know from my own experience and that of my clients and friends that this fatigue is magnified by underlying anxiety, stress, isolation and depression. I can't say if any of those apply in your case, but there are remedies. Getting connected with others in your situation is enormously helpful. This could be in a support group or some of other form of group activity. Working with a mental health professional can save you lots of time and energy by focusing on issues and/or beliefs that may be keeping you stuck in a repetitive, discouraging loop.

I hear and understand that you are feeling discouraged and even hopeless, and I can't tell you that everything will be better, but I want to remind you that there are people and tools that might be able to help you find relief if not from physical pain itself, then certainly the feelings that go with it.

Best wishes to you,


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