Wes' HIV & Neuropathy Medication Regimen

(Also see Wes' Full Medication Regimen, which shows other medications plus vitamins & supplements.)

Date	Change	Reason	Resulting regimen
January 1991?	Began low-dose oral alpha interferon.	There was one study from Kenya that this might help.	Low-dose oral alpha interferon
January 1992	Began AZT (one 100mg tablet 3x/day).	Project Inform thought that, if antiretrovirals were designed to slow down HIV, it made sense to start antiretroviral therapy early -- even before the immune system started weakening. FYI, it took me about 6 weeks of feeling pretty crappy before I acclimated to AZT.	Low-dose oral alpha interferon Retrovir^TM (AZT) 100mg TID
July 1992	Added ddC. (I don't remember the dose.)	Project Inform had a theory that two drugs were better than one.	Low-dose oral alpha interferon Retrovir^TM (AZT) 100mg TID Hivid^TM (ddC)
January 1993	Stopped ddC. Stopped low-dose oral alpha interferon. Began ddI (two 100mg 2x/day).	I stopped ddC because it made me an awful bitch. I was anxious and gnarly. ddI turned out to be much kinder to me -- and those around me! I stopped the low-dose oral alpha interferon because there were reports it might cause tooth damage.	Retrovir^TM (AZT) 100mg TID Videx^TM (ddI) 200mg BID
August 1995	Added 3tc.	In the preceding year, my t-count had dropped from about 450 to 300. I was starting to get concerned. Plus, viral load tests had become commercially available in late 1994 and I knew that, although my viral load was low, it was not undetectible.	Retrovir^TM (AZT) 100mg TID Videx^TM (ddI) 200mg BID Epivir^TM (3tc) 150mg BID
June 1996	Added Crixivan (protease inhibitor). Doubled my AZT (from one 100mg 3x/day to two 100mg 3x/day). (I hadn't gotten the expected t-cell boost from AZT+3tc when I added 3tc six months ago, so that's why I boosted the AZT.) Added d4T (40mg 2x/day). d4T works on the same enzyme as AZT. I figured this was good, since my 4 1/2 year stint on AZT seemed to have me a bit resistant. Dropped ddI.	For an in-depth discussion of my reasons, check out Wes' Drug Decision Process -- Part One and Part Two.	Retrovir^TM (AZT) 200mg TID Epivir^TM (3tc) 150mg BID Zerit^TM (d4t) 40mg BID Crixivan^TM
February 1997	Dropped Crixivan. Began Viramune (nevaripine) 200mg tablet 2x/day.	The strict dosing regimen of Crixivan just wore me out. I'd take my last dose at midnight with a full glass of water, then not get to bed until 1am after using the restroom. Then my next dose would be at 8am -- just 7 hours after going to bed. (The next dose was 4pm.) For six-plus months I hadn't gotten a FULL night's rest. I was exhausted.	Retrovir^TM (AZT) 200mg TID Epivir^TM (3tc) 150mg BID Zerit^TM (d4t) 40mg BID Viramune^TM (nevaripine) 200mg BID
April 1997	Dropped AZT.	Going off of it due to conflict with d4T. (See below.) Going off of it coincided with being on nevaripine/Viramune for two months. A November 27, 1996, internal memorandum from the AIDS Clinical Trials Group (ACTG) contained a warning about the combination of the drugs AZT (Retrovir) and d4T (Zerit). People taking this combination in a study known as ACTG 290 experienced significant unexplained drops in their T4 cell counts.	Epivir^TM (3tc) 150mg BID Zerit^TM (d4t) 40mg BID Viramune^TM (nevaripine) 200mg BID
January 1998	Dropped d4T. Added AZT.	On November 18th my toes got cold and stayed that way. We quickly figured out it was neuropathy. It became quite an annoyance. (See THE SAGA OF THE TOES, MORE ABOUT MY NEUROPATHY and MORE ON "THOSE DARN TOES!".) When I went to see my doctor, she immediately said "We've got to drop d4T to stop the neuropathy from progressing further." (She also suggested using Neurontin^TM (gabapentin) 100mg 3x/day to help with the neuropathy in the meantime.) But this fact presented us with a problem: My existing 3-drug "cocktail" (d4T/Zerit^TM/stavudine + 3TC/Epivir^TM/lamivudine + nevirapine/Viramune^TM) had been keeping my viral load down to undetectible levels. Current theory was that when changing drugs, a person should change to two new ones at a time. There aren't two new drugs for me to change to. So, we only changed one drug: Dropped d4T/Zerit^TM/stavudine and added AZT/Retrovir^TM/zidovudine. (Since I was on 3TC already, the switch will actually be to "Combivir^TM", the AZT/3TC combination. FYI: Each Combivir tablet contains: retrovir (AZT) 300mg and lamivudine (3TC) 150mg	Retrovir^TM (AZT) 300mg BID Epivir^TM (3tc) 150mg BID Viramune^TM (nevaripine) 200mg BID Neurontin^TM (gabapentin) 100mg TID
August 1998	Increased Neurontin^TM 100mg TID to 300 mg TID. Began Elavil^TM (amitriptyline HCL) 25mg at bedtime.	My neuropathy started coming on in my arms during naptime -- which meant I couldn't rest during the day anymore. Even though the Elavil^TM was at night, when I wasn't having neuropathy, it was supposed to last 24 hours.	Combivir^TM (AZT/3tc) 300mg/150mg BID Viramune^TM (nevaripine) 200mg BID Neurontin^TM (gabapentin) 300mg TID Elavil^TM (amitriptyline HCL) 25mg QD
November 1998	Dropped Elavil^TM. Began Pamelor^TM (nortriptyline) 10mg at bedtime.	The Elavil^TM was very drying. This caused me to have sinus gunk while I was on it.	Combivir^TM (AZT/3tc) 300mg/150mg BID Viramune^TM (nevaripine) 200mg BID Neurontin^TM (gabapentin) 300mg TID Pamelor^TM (nortriptyline) 10mg QD
January 1999	Increased my nortriptyline dose to both right before bed and right after I got up.	My aggravating daytime arm neuropathy was not getting any better Though we increased the dose to try and ease the neuropathy in my arms, it caused the "cold" neuropathy in my feet to largely resolve. It was not what I had hoped for, but it was a wonderful blessing!	Combivir^TM (AZT/3tc) 300mg/150mg BID Viramune^TM (nevaripine) 200mg BID Neurontin^TM (gabapentin) 300mg TID Pamelor^TM (nortriptyline) 10mg BID
January 2001	Efforts to reduce fatigue	My Austin doctor wanted to try and reduce my medications that had sedating effects to reduce fatigue, but still manage the neuropathy. As part of this we added two non-sedating supplements L-carnitine 1000mg BID and alpha lipoic acid 300mg BID that can be helpful for neuropathy. We’re listing these on Wes' Full Medication Regimen. Though we successfully decreased the dose of nortriptyline without a resurgence in neuropathy, originally dropping off it completely dropped Officer Wes into a pernicious depression that was difficult to trace. Once we realized that, we resumed it at a once-a-night dose. In 2006 we increased the nortriptyline again after another period of aggravating neuropathy. We also tried decreasing the Neurontin^TM 300mg TID but the neuropathy resurfaced with a vengeance (until the reduction was complemented by adding Depakote^TM—see below).	Combivir^TM (AZT/3tc) 300mg/150mg BID Viramune^TM (nevaripine) 200mg BID Neurontin^TM (gabapentin) 300mg TID Pamelor^TM (nortriptyline) 10mg QD at bedtime
May 2001	Decreased Neurontin^TM TID to QD to reduce fatigue Added Depakote^TM (valproic acid) 250mg BID for neuropathy	This was a continuation of the process begun above: My Austin doctor wanted to see if we could achieve a better chemical and fatigue balance (less depression / more energy). We approached this by lowering medications that might cause fatigue. Unfortunately, that resulted in my neuropathy getting out of hand, which then seemed to exacerbate the depression and fatigue. The obvious choice to me was to return to Pamelor^TM (nortriptyline) 10mg BID, which had worked previously. The Austin doctor suggested Depakote^TM instead. My Houston doctor concurred. Depakote^TM had several things going for it: Anticonvulsant (like Neurontin^TM) Antimanic (mood stabilizer) Metabolized primarily through kidneys (to help keep my liver burden down) Can measure its level in the bloodstream It helped re-stabilize my neuropathy	Combivir^TM (AZT/3tc) 300mg/150mg BID Viramune^TM (nevaripine) 200mg BID Neurontin^TM (gabapentin) 300mg QD Depakote^TM (valproic acid) 250mg BID Pamelor^TM (nortriptyline) 10mg QD at bedtime
May 2006	Essentially swapped AZT for Ziagen by changing combination-medication pills from Combivir^TM to EpZiCom^TM -- both of which have Epivir^TM (formerly known as 3TC, and also known as lamivudine) as their partner medication: Stopped Combivir Added EpZiCom^TM	My neuropathy had been problematic all year. The idea here was to get me off of AZT and onto one of its less neurotoxic cousins. It took us a long time to finally figure out that EpZiCom was intensely wrong for me and was the source of vexing problems that plagued me for months –which disappeared one week after stopping EpZiCom.	EpZiCom^TM (Epivir [lamivudine]/Ziagen [abacavir]) 300mg/600mg QD Viramune^TM (nevaripine) 200mg BID Neurontin^TM (gabapentin) 300mg QD Depakote^TM (valproic acid) 250mg BID Pamelor^TM (nortriptyline) 10mg QD at bedtime
August 2006	Stopped EpZiCom^TM Added Truvada^TM	My neuropathy never got better with the change off Combivir; first onto EpZiCom and then onto Truvada. But my body otherwise tolerated Truvada WAY better. I could sleep. So, having done what we could with the HIV medications directly, we changed the Pamelor^TM (nortriptyline) 10mg from one at night for depression to two in the morning to help with neuropathy. It helped somewhat. FYI, my doctor mentions two new neuropathy options I have not yet tried: Change Neurontin to Lyrica Change Neurontin to Cybalta (also helps w/pain & depression)	Truvada^TM (emtricitabine 200mg and tenofovir disoproxil fumarate 300mg / VIREAD) Viramune^TM (nevaripine) 200mg BID Neurontin^TM (gabapentin) 300mg QD Depakote^TM (valproic acid) 250mg BID Pamelor^TM (nortriptyline) two 10mg in AM

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