What to substitute for Videx EC?

[Blixer]

I've had a rough time getting started on meds.  My first experience was with Sustiva and Epzicom in a double blinded study.  I knew about the sustiva but not the Epzicom.  After 17 days I developed extreme pain in the legs, ankles and feet, so the medication was stopped.  At my request, the study was unblinded.  (Basically I said I wasn't going back on anything unless I knew what it was).  So after 24 days off medication the pain still had not totally resolved, but we decided to start again. This time I was on sustiva, epivir, and videx EC.  I had a return of pain, but not nearly as bad.  Now, 18 days into the new combo it seems that the pain is starting to reduce significantly (or it could be a trick...these meds have tricked me before). I'm still having some leg, ankle and foot pain.  This is mainly muscle pain.  The calf muscles are extremely sore to touch but not sore to movemement.  At any rate, I've also had some muscle pain in the forearms and some pain in the hands.  This has lessened over the past couple of days too.  I'm still having some buring/tingling in the tops of the feet, hands, tongue, and lips.  I was informed on Wednesday that the studies committee was concerned aboutg the Videx EC because of it's tendency to cause perpherial neuropathy.  So we may be pulling that and substituting something else.  Any suggestions of waht might be good to substitute for the Videx EC given the pain problems I've had.  Ironically, I was all prepared for the GI side effects and I had none. I was prepared for the other side effects of sustiva, and basically had none.  Only the pain, which I'm told is an extremely rare side effect.

Any suggestions or thoughts?

[gerry]

Viread would be the most logical next NRTI choice.  The other 2 NRTIs (D4T and AZT) would have the same concerns as the DDI.  If it still causes a problem, you might need to consider unconventional combos, such as a PI-NNRTI combo.

[Blixer]

Thanks gerry!  At least I'll be prepared when I go talk to my doc.  Needless to say, after an unsuccessful first start and then the continuing pain for 50 days now I'm beginning to lose a bit of confidence in my doc.  I'm actually in a study and I think they just don't listen too well. I don't think they have a concept of what has been going on with me.  I did get a backup plan and see a new doc this past week.  She actually listened to me and already has a plan for changing meds if we need to do that. 

[muffle]

The two main substitute of Videx seems to be Zerit (d4T) and the protease inhibitor Viracept (nelfinavir). I heard about it through this site:-

http://www.drugdelivery.ca/s3811-s-VIDEX.aspx

But I heard that Videx is a good medication , as an antiviral for HIV, it's good.

[gerry]

Where in that site did it say that D4t and nelfinavir are the "main substitutes" for Videx?  I'd be very skeptical about getting information from a site that's in the business of selling these drugs on-line.

[Blixer]

Well, for now I'm sticking with the Videx EC.  I didn't see a great improvement in things after being on it for 21 days.  VL dropped from 606 to 414 but the CD4s also dropped from 640 to 576 and the % went down from 22% ato 18%.  But I'm told that with being on meds for 17 days, then off for 22 days, then back on, that 3 weeks isn't enough time to really expect a big change.  I'm still having some pain, mainly in the legs, ankles, and feet.  They are not swollen, but they just feel tight and aching.  Sometimes I get the burning and pins and needles feeling.  But at least this is so much better than when I was on the Epzicom.  And maybe things would have resolved with the Epzicom too, but I was in horrible pain with it.  This is at least tolerable for the short term. I hope I don't have to live like this.  But I can at least sleep though the night and the pain doesn't wake me up.  I was only getting a couple hours of sleep a night before.

My biggest concern is the connection between Videx and pancreatitus and perpherial neuropathy.  But I guess I'll stick with it for now.  I have lost a bit of confidence in my doctor. I'm in a study and sometimes I wonder if he is more interested in the study than in me.  That's why I now have a "second opinon" doctor that I'm bouncing things off of.

Thanks for the input!