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Medical Forum / Diseases and Disorders / AIDS / October 2004Nerve damage
“The antiretroviral drugs currently licensed in the United Kingdom [June 1996] are zidovudine (azidothymidine [AZT]), zalcitabine (ddC) and didanosine (ddI). All three are nucleoside analogues...All are very toxic. Suppression of bone marrow elements can occur with any of the three, as can peripheral neuropathy [nerve damage].” Adverse Drug Reaction Bulletin. 1996 Jun;178:675-8. – Ellis C.J., Leung D., Aids researchers “A decrease in mtDNA [DNA of the mitochondria; the energy regulating entities within every cell] content was found in HAART-treated HIV-infected patients with peripheral fat wasting in comparison with subjects in the control cohorts...Lipodystrophy with peripheral fat wasting following treatment with NRTI [Nucleoside Reverse Transcriptase Inhibitor]-containing HAART is associated with a decrease in subcutaneous adipose [under the skin fat] tissue.” AIDS. 2001;15:1801-9 – Shikuma CM, Hu N, Milne C, et al, Aids Researchers >The antiretroviral drugs currently licensed in the United Kingdom [June >1996] are zidovudine (azidothymidine [AZT]), zalcitabine (ddC) and [quoted text clipped - 4 lines] >Adverse Drug Reaction Bulletin. 1996 Jun;178:675-8. > Ellis C.J., Leung D., Aids researchers Agreed! Even if it is 1996, this reality has not changed. Lower doses may be as effective and less toxic. Use of certain supplements such as B-complex, B12 and, most particularly, acetylcarnitine, may help offset the neuropathy. A blend of Chinese botanicals called Marrow Plus has anecdotally helped to offset some of the bone marrow suppression, resulting in improved white and red blood cell counts. However, there are no clinical data to support this observation. George M. Carter "GMCarter" <fiar@verizon.net> wrote in message > Lower doses may be as effective and less toxic. Use of certain > supplements such as B-complex, B12 and, most particularly, > acetylcarnitine, may help offset the neuropathy. The long-term prognosis is not very good, but the good news is that there is a long term prognosis. A close friend has already made plans for what will happen to him once he needs the kind of care that we envisage will be necessary when the neuropathy becomes severe. They involve living with me. :-) Moira, the Faerie Godmother > "GMCarter" <fiar@verizon.net> wrote in message > [quoted text clipped - 7 lines] > that we envisage will be necessary when the neuropathy becomes > severe. They involve living with me. :-) I was almost house bound due to neuropathy but have found that 40 mg daily of Methadone is an effective treatment for the pain and greatly improved my mobility. One needs to be aware that strong opiates can cause constipation but in my case that was counteracted by the diarrhea caused by the ARV's for the most part though I do need to stay very well hydrated to avoid problems. The other advantage of Methadone is that it is very cheap compared to all the other pain killers I tried over the years. Martin Delaney has also found that Methadone is the only painkiller that works for him we both spent years trying things like Neurontin, Pain Patches, Oxycontin, Morphine, Codeine, Percoset etc etc none of which provided the level of relief and minimal side effects of Methadone. Gary Stein "Gary Stein" <ge.stein@verizon.net> wrote in message > I was almost house bound due to neuropathy but have found that 40 mg daily > of Methadone is an effective treatment for the pain and greatly improved my [quoted text clipped - 3 lines] > The other advantage of Methadone is that it is very cheap compared to all > the other pain killers I tried over the years. Thanks for the information which provides hope. At the moment my friend is still coping with almost everything, although his fine motor skills are a bit of a problem. He is not medicating the side effects. Of course, we are hoping that other regimens will be developed that will circumvent the problem with the Zerit. Moira, the Faerie Godmother This posts clearly shows a great lack of any real experience; not in touch with the realities of the millions of people around the world living with HIV and AIDS. The incidence of people suffering from severe side effects from HIV/AIDS medications is low in comparison to the vast numbers who benefit, when they most definitely would not otherwise! To talk about AZT as if it is the only pharmaceutical treatment for HIV and AIDS; as if everyone who takes AZT will suffer side effects and die, this is not true! Originally the dosages of AZT were high and taken every four hours. Unfortunately this was too toxic for some people; however, AZT is still in use today, successfully! There are people who are alive today because of AZT and there are still people today who have been taking AZT all along and benefited from taking AZT. Also, AZT has and is being used (successfully) to prevent the transmission of HIV from birth mother to child. There are many new HIV/AIDS medications which are being used today and combinations which include AZT. Some individuals fare better than others when it comes to the side effects of pharmaceuticals but we do not condemn there use in the treatment of many illnesses and diseases. For the most part they are highly effective. People benefit! The lives of millions are saved by a singular or combination treatment of HIV/AIDS drugs. Without them, myself and others would not be here today! There are always risks involved when dealing with illness, especially life threatening! For information HIV and AIDS: see HIV/AIDS organizations; where you will find support along with accurate information. > This posts clearly shows a great lack of any real experience; not in touch > with the realities of the millions of people around the world living with [quoted text clipped - 31 lines] > For information HIV and AIDS: see HIV/AIDS organizations; where you will > find support along with accurate information. While I agree with most of what you say, it is not wise to downplay the serious side effects of ARV. It is my opinion that Zerit should be used only in salvage regimens and only as a drug of extreme last resort. The link between Zerit and neuropathy is simply indisputable and does not as you say effect only a small number of patients. Rather the opposite is the case with a significant percentage of those who take Zerit for prolonged periods of time ending up with neuropathy. High Cholesterol, diabetes, fat redistribution, facial wasting and Hart disease are all seen at much higher levels in those on ARV then those who do not use ARV. Yes with out ARV none of these patients would be alive to suffer these side effects, but we can not simply ignore them. We need to be advocating for safer more effective treatments at all times and never get complacent and accept the Status Que. Gary Stein |
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