Question
I have been living with HIV for 10 years…
10 January 2024. Related: All topics, CD4 and viral load, Changing treatment, Newly diagnosed, Research, Side effects, Starting treatment.
I’m a (soon to be) 40yr old male. I was diagnosed as living with HIV in May 2023, which came as somewhat of a shock, as I’ve been with my husband for 10 years at the point of diagnosis. Neither of us have been unfaithful during that time and my last HIV test was about 4 months before we met which was negative. So I’ve had it for about 10 years.
When I was diagnosed my Viral Load was 9020 and my CD4 was 324. I started medication the same day. I quickly became undetectable (between 4-6 weeks) and after 3 months my CD4 had gone up to 474, which I’m pleased about.
My question is why my viral load was relatively low after having it for so long and given my CD4 count at the time, I was expecting my VL to be quite a bit higher. A couple of specialists I spoke with at my appointments were surprised it was as low as it was and couldn’t give an answer.
I also have a gene called HLA-B27. Would this have helped with controlling the virus? I’ve had a look on the Internet and any information I’ve found is either old or too technical for me to understand.
When I was first diagnosed in May I was put on a triple combination therapy and in October I was switched to Dovato (double combination). Whilst on the triple combination my kidney function started to slowly decrease, my blood pressure increased quite markedly and my heart rate increased. Within a couple of days of switching to Dovato my heart rate and blood pressure returned to normal. I had a follow up blood test in November and my VL remained undetectable. I have a follow up appointment in January and they’ll be doing my full bloods again.
Is there a chance my kidney function will have increased since switching? It might be worth noting that a month before being diagnosed I had bloods taken by my GP and unbeknown to me my kidney function was borderline (not sure what they meant by borderline) and a re test by my GP recently returned as ‘Satisfactory’.
Answer
Hi, how are you doing?
It is great to hear that you were able to start medication the same day as your diagnosis, more so that you became undetectable so quickly. By quickly having your viral load suppressed this is what has allowed your CD4 count to recover. An increase of 150 over 3 months is very encouraging.
After 10 years there is some reasoning for your viral load to be low. There is an inital spike in viral load in the first few months after transmission. This is often higher than 100000 copies. When this high your body is able to mount an immune response to and slowly bring this value down. Over time this value can increase but at a slower rate.
In your case it is possible you are a ‘long-term slow progressor (LTSP)’. This is someone who naturally is able to suppress HIV with little impact on their immune system. The viral load increases but at a much slower rate to someone who is not a LTSP. These cases are rare and is likely why your specialists were surprised.
What further supports this, as you have mentioned is testing positive for HLA-B27. This is a type of gene variation that has an association with being a LTSP. The variation alters your immune system and helps you mount a stronger immune system that most people. The major finding being that in general around 4% of HIV positive people have this gene. Of those who can be identified as LTSP, almost 80% do.
It is good that your treatment was switched so soon after identifying problems with your kidneys. How are you doing on Dovato? It is encouraging that your BP and HR have returned to what they were.
Yes there is a chance that your kidney function will return to normal. It is difficult to comment as you have said your doctor has described your kidney function as borderline which is an ambiguous term. Though you should expect improvement after being taken off the drug that was causing problems.
Josh.
Hi Phil, its great to hear that the insomnia has worn off. As long as the time of treatment is working for you and you no longer have these side effects, there is no reason to switch.
There is no one best time to take treatment. It’s more important to take it at the same time every 24 hours, rather than there being a best time during the day to take it. Whether you always take it at 6am or 6pm it will be effective, the difference being if you experience side effects.
Hi Josh, thanks again for your reply.
I take the Dovato at 6pm, I initially picked this time with my previous medications as it fitted in with job (I work shifts). After switching I stuck to the same time, but contemplated changing the time to the morning when I had the insomnia after reading this might ease or help to prevent insomnia, but after the insomnia eased I stuck with 6pm.
Does taking medication at certain times have a better effect or does the time you take them have no effect?
Thank you for the links, they’re very informative.
Hi Phil, it is good to hear that you are doing well on Dovato and that the side effects have now subsided. What time of the day are you taking Dovato?
It is very impressive to hear how you have managed depression over the last few years. It’s great that hiking and being outdoors can help you so much.
You have an excellent CD4%. Unlike the CD4 count which can fluctuate, the CD4% is more stable – it is good that it has not changed in the last few tests. Above 29% suggests an absolute CD4 count above 500. This is more accurate than the actual count as this can be effected by other infections, recent vaccines and even the time of day the test is done. CD4% is not effected by these factors.
This is explained further here: https://i-base.info/ttfa/section-1/9-interpreting-cd4-results-cd4-count-and-cd4-percentage/
Your doctor has suggested an excellent list of vaccines. This is likely in conjunction with your childhood vaccines if you have had them? The only other vaccines that would be recommended is if you are in at at risk group for any of these infections. These vaccines can be discussed with your doctor and are: Hep A, Men B/C/ACWY. A chickenpox/shingles vaccine can also be suitable but only if the case if you have not had chickenpox yourself in the past.
It sounds like you are living a healthy life. For the most part there is no regular monitoring you will require if you are generally well and HIV is being managed. You are already doing everything right to help with your health lifestyle wise. This is further discussed here: https://i-base.info/guides/side/lifestyle-and-quality-of-life
Hi Josh. Hope you’re ok. Thank you for your reply. It has been an interesting few months learning what I’ve learnt so far after the initial shock at my diagnosis had subsided. The information I had was outdated as it’s not really discussed in the general population.
I’m doing well on Dovato, I had insomnia and low mood after switching for the first week but it soon subsided. I’ve had depression twice before about 20 years and 16years ago, and took antidepressants for a year or so each time to see me through to the other side, and developed tools to use when my mood is low. Exercise and more specifically hiking and being outdoors helped a lot. I haven’t used antidepressants for about 15 or 16 years.
I forgot to mention previously that whilst my CD4 count went up, my CD4% has remained pretty stable so far: 31% at diagnosis and 30% at 3 months. I’m not sure how CD4% works or if it can be translated to a CD4 count.
I have a 3 monthly follow up next week to check my VL, CD4 and full blood work. If all goes well I’ll go to 6 monthly check ups.
A couple more questions. I’ve had all the vaccines that I’ve been offered (Covid, Flu, Pneumonia, Hep B, HPV), is there any others that are recommended?
Is there anything to keep an eye on health wise or is there anything I might be more susceptible to? I quit smoking 6 years ago, I very rarely drink alcohol, I take a multivitamin daily, eat healthier and do aerobics 3-4 times a week.
Once again, thank you for your reply.