Question

I am too scared to start medication!

11 June 2010. Related: All topics, CD4 and viral load, Starting treatment.

I found out 4 years ago that I had HIV, which was an immense shock. My counts have always been relatively good fluctuating between CD4 350 and 500, until beginning of May when it suddenly dropped to 250.

Another test was done and today I was told this had dropped again to 150 and that the viral load had increased to 120,000 I was advised to start medication immediately.

However, the overriding fact was based on the drop of my platelet count which started at 135 when I was first tested and since January 2010 has dropped each time it was tested. These are now at a count of 86. I have also been given antibiotics as a precautionary measure.

This is the first time that I understood the platelets helped determine the start of medication. I am sitting here now with the medication reluctant to start taking it in case this could be a blip and something that may change in my next test.

I have always had a reluctance to take any type of tablets including paracetamol, being someone who has to be in severe uncontrollable pain to take so much as a paracetamol, The mere thought of taking medication at set times every day makes me go cold. I am scared I might forget and make things worse; I am very reluctant to take any medication until absolutely necessary.

Can you please shed any light on the platelet situation? I am tempted to wait another 2 weeks to see if the counts change, or will this be too late? Many thanks

Answer

Answer: Charlotte Walker

Thank you for your question.

Platelets are responsible for the clotting of the blood. The normal amount should be between 150 and 400 (x10⁹ per litre). This means your platelet count is on the low side. If platelets are low then this can cause symptoms that include nosebleeds, bruising and red or purple discoloration of the skin, but these are still unlikely while your platelet count is still above 40.

Platelets are not usually an indicator of when you should start HIV medication but they can be an indicator of another underlying complication. Your doctor should run other test to find out what is causing this. Your CD4 count is the main reason for starting HIV medication.

If your CD4 count is already at 150 and your viral load is above 100,000 then you need to start treatment now to avoid getting any opportunistic infections. Current recommendations are to start treatment at around 350. If your CD4 count has dropped to 250 and then further dropped to 150 this is unlikely to be a lab error.

The earlier you start your treatment once you reach a CD4 count of 350 the more likely it is that your immune system will recover. If you continue to delay you may find you cause yourself problems in the future.

You are right in that you should prepare yourself about the implications of taking treatment at the same time every day for the rest of your life. Currently, until there is a cure, HIV treatment will become a regular part of your life, because treatment breaks or interruptions are not recommended.

I know this seems difficult, especially if you have never needed medications before, but HIV is different. Unlike painkillers for minor aches and pains, HIV can result in serious illnesses. The drugs used now are much easier and more tolerable. Everyone worries beforehand, but afterwards people usually say it just becomes an easy part of life.

Finding the most appropriate time each day for taking your medication which fits in well with your lifestyle is very important. There are ways in which you can help yourself to remember. Setting an alarm on your phone for instance. The Terrence Higgins Trust (THT) runs a service that sends you text messages when it is time to take your medication so that you don’t forget.

For some tips on how to help with adherence to the medication please follow this link

For more information on deciding when to start treatment please follow this link and for more general information including charts to help monitor your adherence please read the i-Base ‘Introduction to Combination Therapy’ guide.

Good luck with starting your treatment and please let us know how you get on.