Q and A

Question

Why do I have pain in my hands and feet?

I am having numbness/tingling in my hands and feet and it’s getting painful, what is the cause?

Answer

It sounds as if you might be describing peripheral neuropathy (PN).

The symptoms of PN range from mild tingling (pins and needles) in the fingers/hands or toes/feet – to numbness and hypersensitivity that can be extremely painful.

This is no longer a side effect of modern HIV drugs but  it can be a side effect of some drugs that are used to treat TB or cancer.

For information about peripheral neuropathy, please see this link.

PN can also be related to several older HIV drugs that you may have used many years ago.

  • d4T (stavudine, Zerit)
  • ddI (didanosine, )
  • ddC (zalcitabine, Hivid)

If you are still taking any of these drugs, speak to your doctor about changing them for alternatives. Do not stop the drugs before you speak to your doctor.

Sometimes a lower dose of d4T can be used, but it is better to change to a completely different drug.

HIV can also cause neuropathy, especially if your CD4 count has ever been very low (under 200, and especially if under 50 cells/mm3).

The earlier you switch the better the chance that this will get better. However, you may have to wait up to two months to know how much this has helped.

Often symptoms can continue to get worse before you notice an improvement.

Symptoms can sometimes stop although this does not happen to everyone. If your symptoms don’t get better and you have already switched from d4T or ddI then speak to your doctor about being referred to see a specialist.

This answer was updated in January 2016 from a question that was first posted on 12 October 2012.

2 comments

  1. Rebecca McDowall

    Hi Dion, I have created a new page where your question is answered.

  2. Dion

    Hi,I got non-Hodgkins lymphoma,plastic nom blastic type about a year ago,when I was diagnosed with HIV,with a CD4 of 48.

    After chemotherapy,the cancer was in remission,however 10 months afterwards a small cist was dicovered and I went on another more fierce chemo regime.Again after chemo the CT scan revealed no cancer.

    My CD4 after 10 months on atripla was 178.The doctors requested a stem cell transplant,which failed to yield bone marrow cells after treatment with G-CSF.

    Now they are trying a drug called mozobil,but it is not registered in South Africa,and very expensive.Should I not rather discard the stem cell transplant and wait for my immune system to recover? I gained 130 CD4 cells in the first ten months on ARVs.What would be a safe threshold for my CD4 for my body to keep the cancer at bay? I do not want to endure the pain of a stem cell transplant is my immune system is recovering.

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