Hi! my alkaline phosphatase was the only enzyme that used to be slightly elevated. The way it was explained to me: this enzyme indicated duct blockage- or is more associated with transport through, than cell damage within, tissues....... Like I said, my was always just a little high, two biopsies, no damage, chronic inflammation consistent with hep C: mild triaditis. Hope that at least lessens the anxiety until you can do the catch up reading!!
Thanks for the treatment synopsis. I'm sorry you're having to go through all this, but it's obvious you're a real fighter, and in the end, that's what will get you through all this. Dr. Schiff has an excellent reputation and sounds like consulting with him is right next step. Please let us know what he says. Fortunately, there's a lot of new stuff on the horizon so if one thing doesn't work, hopefully there soon will be others. Your treatment journey and eventual SVR will be in my prayers.
-- Jim
I apologize in advance for breaking in on this thread & I am hoping that Jim will catch this.
Jim-this is a quick synopsis of my treatment, discussed on Wed.
F,1B with possible viremia,lobular inflammation-2, portal inflammation-3, fibrosis-4. (Starting weight 225.)This is ok since I am 7ft. tall!!!!
Unfortunately when I was diagnosed In Jan. 02, I panicked & my only thoughts were to get rid of this disease asap. I was advised to see a top Gastro in Orl., without doing any research on the disease or Doctor. This was my first big mistake.
I was placed on a wait-list for Peg-Intron/Riba & started therapy in 9/02, .5 peg,1200 Riba. The meds were reduced one mth. later to 2.5 Peg, 800 Riba, for 7 weeks, due to sides.They were then increased to .5 peg, 800 Riba. Sides were horrendous, resulting in 2 ER visits (dehydration& ears), & 2 units of blood in 7/03. This Gastro offered no help and his standard answer was "I havae never heard of this happening." I finished this therapy on 8/03.(48 wks.) I showed undetectable in 12/02 & throughout the remaining mths. my VL & enzymes fluctuated terribly.I was considered a non-responder & then a relapser.
By 10/03, the Hep C was back at 5,280,000. I took a break, and researched, found a Hep C Specialist,won an insurance appeal and I was ready to go again. This time much more informed.
I started Infergen .5 daily and 1200 Riba. At 12 weeks my VL was 360, and then I showed 6 consecutive non-deductibles.Sides were just as bad, resulting in 8 falls. (luckily, I had enough cushioning, that I didn't break every bone in my body) My Hep C Specialist gave me everything in the world to help me get through this, as well as his strong support. Thinking I was clear, my family whisked me away to N.C. for some R&R.
I felt good for 3 wks. & then my body told me something was wrong. On 8/5, my VL was 12,300,000 & enzymes rising. Back Again.
I was put on Pegasys Maintainence at this point for 6 wks, .4 per wk. Again here came the sides. Back to the Doctor and my VL was 30,200,000 and you guessed it back on maintainence, where I am today.I have no stamina, fatigued all the time, sore mouth, etc. My main concern at this point is that my feet & legs go numb, without any warning.I have been to a Neurologist, carpal tunnel-can you believe? I saw an Orthopedic Surgeon on 2/03/06, who diagnosed it as a back problem. MRI's done. On 2/28/06, I received a cortisone injection in my left knee-did nothing. I was then referred to see a Neuorosurgeon, which I will see on 3/8/06. It appears that from X-Rays, I have degenerative canal stenosis, which means that I have narrowing of the lumbar spinal column, that produces pressure on the nerve roots resulting in sciata & inadequate blood supply to the muscles.
HaveI had this all along or is this the effects of the
interferon? Who knows?
My Hep C Doctor is speaking with Dr. Schiff at U.of FL., & has forwarded all info there including biopsy slides for him to evaluate and see if I am a candidate for the 2nd. round of VX-950.
Can my body tolerate this-I am not sure, but willing to try.
I hope I have covered everything, if not, let me know. Hang in there. Sandy
I don't know too much but I know my mother tested very high in the Alkaline Phosphatase numbers as well. I googled it and found out that it CAN mean that there are serious problems with your liver.
The alk phos is a liver enzyme that is monitored for us with HepC but I don't really know why.
Read the link above and try googling high alkaline phosphatase (however you spell it). My mom REFUSES to do anything about it saying "I'm 65 I'll die soon enough anyway what I don't know won't hurt me". I am NOT of that club and think all problems should be looked into.
But that's just me.
Best of luck