AEGiS-NV: I am on ARV, but my health has deteriorated The New Vision (Uganda)Important note: Information in this article was accurate in 2006. The state of the art may have changed since the publication date.
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I am on ARV, but my health has deteriorated

New Vision (Kampala) - November 28, 2006


Dear Doctor,

I have been on ARVs (Triomune) for about six months and my CD4, which was 60 cells, has risen to 250. I have generally improved and no longer feel sickly. However, I have one problem; before starting on ARVs, I had numbness and pains in my feet. I thought this would improve while on ARVs, but it has become worse. I can hardly walk at times due to the pain. What can I do? Will this improve or do I have to live like this for the rest of my life? Miriam.

Dear Miriam,

All drugs, ARVs inclusive, have side effects. However, we use them because the benefits usually outweigh the side effects. The cardinal goal of ARVs is to improve the quality of life for the person using them. From what you describe, the quality of life for you has clearly not improved.

Triomune, the tablet you are swallowing, is a combination of three drugs in one. These are: stavudine, lamivudine and nevirapine.

One of the major side-effects of stavudine is the effect it has on nerves because it causes what is known as peripheral neuropathy, which makes you feel pain and numbness in your feet.

Unfortunately, from what you describe in your question, you had this condition even before you started ARVs and it has become worse. Peripheral neuropathy can be caused by many other conditions including diabetes, drugs used in the treatment of tuberculosis and even HIV.

To help you with this problem, your healthcare giver may have to change your regimen of ARVs by removing stavudine from it. It can be replaced by another drug like zidovudine or AZT if it is not contra-indicated. Reducing the dose of stavudine could also solve the problem.

For example if you have been on triomune 40, meaning the stavudine in the combination is 40mgs; which is what we give people who weigh 60kgs and above, you could be put on triomune 30.

Lastly, before anyone is put on ARVs, they should undergo thorough assessment to rule out conditions like peripheral neuropathy, which could be made worse by drugs.

They should also be counselled and educated about the drugs they are going to start on so that they make informed decisions to start on ARV treatment when they know the benefits and possible challenges they may encounter.

***

Why not a special HIV/AIDS facility?

Dear Doctor,

Why don't we establish special health care facilities for persons with HIV/AIDS in order to avoid the discrimination and neglect we often face when we go to the hospitals? Harriet.

Dear Harriet,

I understand your frustration but considering the size of the problem of HIV we have in this country it may not be feasible to put your suggestion in practice. The issue you raise is that of stigma which can be defined as a process that results in a significant discrediting social label that radically changes the way individuals view themselves and are viewed by others.

Perhaps the biggest challenge we people who are infected with HIV/AIDS have to fight is self-stigma, which affects the way we view ourselves.

People can even have internalised stigma and believe that they deserve to be discriminated against in which case they will not be able to stand up and fight for their rights.

Self-stigma affects the way people view themselves and so they can isolate themselves, get depressed or refuse to eat. They could even refuse to take medicine and effectively commit suicide passively. Because of self-condemnation and loss of self esteem they often cease to be part of social society.

People with self-stigma may not exhibit the health-seeking behaviour and so may not utilise the special health care facilities even if they were near and accessible.

So you can see that with self-stigma even if we were to establish special clinic or hospitals for People Living With AIDS (PLWAs), they may not utilise them. I work with The Mildmay Centre which is a facility that cares for PLWAs but even there we still struggle with stigma. There are other centres like JCRC which are also exclusively for treating PLWAs but then they cannot care for all the people who need care. I believe they way forward is to integrate HIV/AIDS care into general medical care in all health facilities.

Discrimination of PLWAs should be fought by all of us especially those of us who are infected with the virus. People with HIV are entitled to human rights like all others and therefore should not be discriminated against because of their having HIV/AIDS.

Lastly I appeal to all people who are infected with HIV/AIDS to put aside fear and come out so that together we can work towards universal access to treatment for PLWAs. For the rest of the people, the wisest thing to do is to go for an HIV test.

Remember the majority of Ugandans do not know their HIV sero-status. Unless we know our HIV sero-status we shall continue having new infections which will make eradicating this terrible disease from our society impossible.

###

Send your question on HIV to Health Editor, The New Vision. P. O. Box 9815, Kampala or health&beauty@newvision.co.ug


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