Bad news: Neuropathy is back after switching meds

[LatinAlexander]

Hi:

well, just that. Only after 4 days of therapy.

Feeling shitty and dissappointed, hating the world, losing control, with a huge depression

Alex

[milker]

ok ok calm down. What was the therapy about?

Hate the world, I hate it too. What's going on?

Milker.

[allanq]

Alex,
Your signature line indicates that you just started ddI (Videx). Not a good drug for someone who has neuropathy! Both ddI and d4T (Zerit) are major causes of neuropathy. Are there any other drugs that you can substitute for the ddI? Have you had a genotype done?

I hope you'll get back to your doctor as soon as possible. Please let us know what happens.

Allan

[LatinAlexander]

Guys n girls:

Yes. I am sensitive to all the meds.... I have tried AZT and now DDI. I am willing to replace for something that doesn't kill me in the process. I am thinking of Abacavir.... Any ideas on that? What else could I use?

Milker: I am having roblems again with Neuropathy. I had to swtich meds , because of that

Alex

[frenchpat]

Alex,

I honestly can not give you much advice here, but I want you to know that you are in my thoughts and I hope for the best. I have just started to deal with very mild neuropathy that may have been caused by zerit. Switched meds recently (3 months) and if it hasn't subsided it also hasn't progressed. Maybe more time will tell. Hard to be patient sometimes...

Just an idea: you seem to be very sensitive to treatments; I've read somewhere that acupuncture might help with neuropathy. Maybe you would react well to this? Worth trying?

Hope this helps,

Pat

[penguin]

hi alex,
if same sort of pain/feeling as before, (rather than the kinda fluey/achey feeling you might get while meds once again go to work on the virus)  then I'd imagine that the ddI is aggravating the (prob not yet healed) inflammation etc caused by azt.
As a first step, you could try switching the ddI for abacavir or viread. These are both available in combination tabs too - abc + 3tc (kivexa/epzicom) or tfv + ftc (truvada) - but not sure of their availability where you are..?

Hope you get this sorted soon - I know you've had a miserable time of it lately.

kate

[dtwpuck]

Guys n girls:

Yes. I am sensitive to all the meds.... I have tried AZT and now DDI. I am willing to replace for something that doesn't kill me in the process. I am thinking of Abacavir.... Any ideas on that? What else could I use?

Milker: I am having roblems again with Neuropathy. I had to swtich meds , because of that

Alex

I switched to Abacavir because of PN.  I didn't have any problems after that, and find myself oddly protective of my current regime since it took so many years to find the right combo. 
The other part of my cocktail is Viramune.  I tolerate that well also, except for terrible acid reflux.  I have to manage that with prevacid.  But, if that's the least of my worries with side effects, I'm happy to do so. 

I don't know your specific history, but I found that talking to my doc about other possibilities was helpful.  For so many years I felt like "side effect boy", and was incredibly relieved when I found a combo that worked but didn't hurt so much.

[ndrew]

Hi Alex,

I know you have been having such a tough time with the meds and all and I hope things get better.  Please keep us in the know.  Thinking of you.

Luv,
Drew

[milker]

Alex,

sorry I didn't really understand the first post. I hope you get better soon. Vent as much as you need. I don't have experience with this, so I'll let others who know better answer your questions. I just know that in here you can vent as much as you need, and get very good advice.

Milker.

[newt]

Hello Alex

What everyone else said about abacavir/tenofovir

Plus, myalgia and myopathy are known side effects of Sustiva and other drugs of the same kind (NNRTIs, eg Viramune).  Some people are genetically predisposed to process NNRTIs more slowly, esp. (but not exclusively) people with African genetic heritage.  This results in too high levels of Sustiva etc (sometimes 100 x the level needed...) and therefore increased side effects. Maybe it's a Sustiva issue....

PN tends to be (a) a burning sensation (b) symmetrical (same both sides) (c) start from the hands/feet and work up the limbs.  Myalgia (muscle/skeletal pain) tends to be more like an ache, strain, post-exercise feeling, though rather more intense eg perhaps flu-like.

- matt

[LatinAlexander]

Thank you all

Newt: Do you have any eferences on the sustiva issue?. I do not feel the burning sensation, but it is symmetrical. I feel my calves extremely exhausted. So I think I fit better in the myalgia thing. . Plus I am thinking on switching to Abacavir

Thank you

Alex

[newt]

Race affects absorption and clearance of efavirenz

Further genetic link to efavirenz absorption

Myalgia is an uncommon Sustiva (efavirenz) realted side effect noted eg in this AIDSInfo factsheet on efavirenz and in the Sustiva product label (PDF) (line 588).

If this pain is the effect of one of your drugs, it is impossible to discover/resolve which one except empirically (switching)....

 -matt