Hearing loss and starting treatment at a high CD4 count
I am 36 and have tested positive 6 years ago.
I am not an any treatment and my CD4 are up to 700 with a viral load of about 7000.
I am now suffering from hearing loss for the past 2 months (diagnosed as Sudden Sensorineural Hearing Loss or SSHL).
I have lost practically my right ear and my left has dropped to 70-80 decibels but is slowly improving now. This decease is supposed to last for about 6 months: (links below on SSHL)
My doctors are suggesting i start with Kivexa and Kaletra combination. They say that the Newest trend is to start with the antiretroviral treatment at high level of CD4s.
I am not sure I want to go on treatment since there is no real connection between SSHL and HIV. My clinical condition is great (apart from my hearing right now).
I am really confused and can not make up my mind on what to do. I have taken the boxes but haven’t started with the treatment still. I am reading of all the side effects and get discouraged.
What is your opinion?
Many thanks and kindest regards
Thanks for posting a question and allowing us to post the answer online.
This answer will mainly be about your decision to start treatment.
Although HIV is sometimes reported as being related to hearing loss there is not good research results that clearly show whether being HIV-positive increases these symptoms compared to a similar group of HIV negative people, although some studies in the US are now looking in to this.
In general, HIV has the potential to affect all different parts of the body, especially in someone not on treatment, simply because of the amount of virus and it’s impact on different aspects of the immune system. This means that ruling out the impact of HIV is difficult. Also, many cases of hearing loss never have the cause fully explained, which must be very frustrating if you have these symptoms.
This is often a reason for people who have good CD4 counts and who are otherwise healthy to sometimes consider starting HIV treatment earlier, just to see whether controlling viral load has an impact on other symptoms.
When no other symptoms are present, starting treatment at high CD4 counts (above 500) has many potential benefits. However, the clinical benefits from starting early compared to waiting until the CD4 count is 500 or even 350 have not been clearly supported by studies. So starting early ‘may’ be better in the long run, we just don’t have the evidence of weather this definitely ‘is’ better, certainly when balanced against the generally low risks from earlier treatment. These include side effect, resistance, lifestyle changes to ensure adherence etc, and for some people, cost.
So different doctors and scientists, all with the same information, have currently come to different conclusions
about when to start, In the US and some European countries treatment recommended once your CD4 count is below 500, and other European countries recommend a cut off of 350. The US guidelines also included a statement that some members of the writing panel thought that treatment should be recommended at any CD4 count, including higher than 500, even though there is limited evidence for this benefit.
A study called START is looking at these questions and has sites in the US and many European countries. The choice of which drugs you use is up to you and your doctor, and in many countries this is a wider choice than would usually be available, In START you would be randomised to begin treatment now, or wait until your CD4 count reaches 350. Further information on START.
As to the choice of treatment, there are advantages and disadvantages to the drugs that your doctor has suggested. This is something that your doctor should explain, and hopefully include an alternative option as it should be your decision based on the different advantages and disadvantages.
Your choice will have to consider whether you already have drug resistance, how often you want to take meds (once or twice daily), how likely you are not to miss doses, and a choice over the different side effects with each drug. So although most people start on a once-daily combination, a twice-daily drug like Kaletra (lopinavir/ritonavir) is sometimes used when people are more likely to miss doses. This is because there is less chance of developing resistance with a boosted protease inhibitor compared to an NNRTI.
This link includes information on each individual drug.
This link includes summary information about the combinations that are most commonly used in the UK for people starting their first combination.
This guide to combination therapy covers a lots of other aspects of starting treatment
Everyone worries about starting treatment but for most people this quickly becomes a routine part of normal life that they hardly think about. If you are still worried, perhaps call your clinic to talk these issues through.
Good luck with whatever you decide an please let us know if you have further questions.