another good point to bring to the dr is that even though the government will allow only 48 wks of tx if clear by wk 24, will they re treat if you relapse? That would mean an addittional expense of 48 or more weeks in your case. Why not go the extra time or modify the meds the first time around given that you are responding slowly? they rather pay again? start drafting letters and printing reports to present your case if neccessary.
all: for those suffering with neuro and soft tissue problems, I wonder if the many years of hcv ponding on our immune system, ensured irreversible damage to those tissues? It amazes me how some of us have the same symtoms before tx that some start experienceing after starting TX! maybe some of us are very sensitive to even a little natural interferon, reacting as if we were on high doses.
I am holding on to 4 vials of Procrit, I forgot to take them to my dr's office. They accept donations of unopened meds.
Maybe I can donate them to you somehow?
Thanks for responding. This really does make me feel better. I keep thinking with all these sx I must have HCV but I didn't even have these before tx so it fits that it must be the tx hangover. I am just surprised how long they are lasting. Still I will just be glad to get my PCR results later this week. LL
Sorry for the confusion. Yes I am on daily infergen. My labs were drawn at week 4 (day 28), but I wrote that a week later which was day 35. I will get my results back next week (day 42) because the VA takes 2 weeks to return the viral load results. Did I clarify this? It is confusing to me trying to keep ;up with everything. Plus the infergen is really messing with my head. The peg treatment made me moody, but this infergen is a roller coaster ride from hell emotionally. I have constant mood swings, attitude problems, and I am afraid of making decisions about anything cause I don't know if the medicine is playing a part in the decision making process or what. Thanks mikesimon for responding, I am becoming more dependent on this forum all the time. I must check it 2-3 times a day. It is very comforting just reading that there are others out there going through this or who have been through this. It keeps me on the right track especially when I feel lost or that I am losing it, can't cope, or want to quit. I am also starting to recognize the names of the regulars and look forward to everyones progress. My doctor thinks it is great that I have this forum to vent on and get support from. I must agree.
Don: No need for apology, I understand where you are coming from. The reason that it is most important that techcherry modify the dosage, and understand the gravity of the current situation is that tech's doctor is planning on shutting down the tx if there is still a viral load at six months. With the current numbers, not even reaching a 1-log drop after three months (when the biggest drops usually occur), and with the LFT's near 100 (no sign of normalizing liver function), the odds are astronomical that there will still be a viral load at six months.
Rather than wait helplessly for a probable shutdown to tx, I think pushing hard to change or modify therapy, to try for a reasonable response, would make the most sense. It seems obvious that the current regime is not getting any traction, so NOW is the time to correct the course of action, and try to get some real serious drops in viral load. If another three months go by, and tech is still vl positive (as would be predicted) then it will mean another entirely new round of tx from square one, on the heels of six months of hard work.
An experienced HCV doctor would understand the options, and make a move right now! Also, the 2% rule usually works more for those that come close to a 2-log drop in three months, and who have reasonable odds of becoming totally clear in six months. I think the numbers in this case are not at all encouraging, even for the 2% chance.
Layla: As you know I also did 18 months of tx, at high doses, and experienced horrible post-tx sides, for well over a year. I am now 19 months POST tx, am SVR, and the sides are slowly dropping away. The sides have been as follows: Nasty joint pain, back, neck, shoulder, arms, and hips. The neck and shoulder, and mid-back, by far the worst, finally going away in the last few months. Also, extremely dry, irritated eyes, sinuses, and autoimmune sx. like rash on cheekbones, feverish feeling, but low body temps., etc. Gastro sx. have been less frequent, but sometimes pains in mid stomach. Periods of fatigue and then high energy. More energy developing every week though.
Overall, I feel that it will take about two years after ending tx to be rid of the interferon hangover. I hope the improvements continue...for both of us! I think this is typical though, and several docstors I have spoken with have seen this same pattern in patients.
Interferon causes some long term changes in cellular and CNS behavior....takes years to get back closer to normal.
Best wishes!!
Techcherry: Work with your doctor to modify your tx! Increase your odds, and get assertive! Explore daily infergen with your doc. Become a responder. Good Luck!!!
DoubleDose
at 24 wks into tx, I meant to say.
also check this article on treating non responders:
http://clinicaloptions.com/hep/treatment/aasldrnsatellite/