I need your help....

[7summer7]

I have not posted since september. 13 weeks into tx my ammune system crashed and I was admitted into a bubble for a week given nup. and instructed to stop peg. and ribba sent  home returned for 3 weeks with spinal meningitis cantracted because of my wbc. I have been recovering and was expecting some kind of miracle telling myself that maybe because the tx almost killed me It worked faster NOT! now i know why they called me dreamer when I was young. the results are in and I have been off tx for over 4 months my enzyms have never been over 37 42 and they are 98 and 87, vl went from 340,000 to 500,000 what the %$#@ is that about? isnt it soposed to get better not worse? what should I do next? I am afraid that I cant get back on the tx my wbc are bare min at 4.80 those will be gone in the first 2 weeks. do u think i can even go on a trial since i might make them look bad with my issues I dont know Im full of questions im SO SICK OF BEING SICK!!! what do you think? thank you all ahead of time for you very valuable input...

[copyman]

sorry to hear about your troubles. don't worry to much about the vl. that changes all the time and typically if you stop or fail treatment the virus comes back with a vengence. also the enzymens can rise with relapse or failed tx.
try and get your health back then treat with the new drugs which most likely be a shorter course of tx.
best of luck

[willing]

seems you should be very, very grateful you dodged a bullet. The mantra around here is usually to tx onwards full steam ahead regardless of HgB/wbc but you got a clear warning about the risks of low wbc. The 340K to 500K change is noise and is still a low VL.

The main point is you've discovered you may be intolerant to ifn which will complicate getting rid of the virus. The 1st gen PI drugs, due in about a year, leak like sieves and must be taken with ifn. Tx without ifn has been successfully tested by Roche but is still a few years away. It's worth planning for the long term and finding a hepatologist to work with - ifn intolerance is outside the run-of-the mill case load. All the best.

[annieCinMD]

See Bill's second comment in this post: http://www.medhelp.org/posts/Hepatitis-C/is-there-more-or-am-i-done/show/1166962
I'm in no big hurry to retreat with interferon either, and as bad as it was, I am grateful I didn't endure what you did. I watch carefully for any treatments that don't involve interferon. Dont' think the cure should be worse than the disease, and for some folks with interferon it is just that.Best to you.

[becksta29]

hi there,i dont have exact answers for u but just my oppinions and suggestions n self experience and my story is simalar but not as bad n i can relate to the bein sick all the time.
im sorry to hear that u had to b taken off tx cos off WBC n immunity probs,i too had immune probs,i was constantly sick on tx n havin 4 kids doesnt help with try'n to not get sick, cos they pick things up from school etc.
what i did to save me goin off tx was kept me lil gal home from kinder for 2nd half of my tx (i did 6 months tx)and stayed away from every1,n i mean every1,i only went to supermarket n docs n i used hand sanitiser all the time lol.
next time i go on tx if i have too that is....cos im only 3 month post tx.....i will get all my flue shots b4 tx starts n that will help keep my WBC count from gettin too low,the more viruses n bacteria we get the lower it becomes so maybe u just got unlucky n got a baddddd virus which ate up all ya wbc,id say spinal mengingitus would eat up alot of wbc but i dont know alot bout it so its just my oppinion k :) n im tryin to say imo u might not b intolerant to interferon it could just b the mengingitus etc,but i dont know just sayin what it might b as im no doctor lol.

my doc lowered my interferon down to 135 instead of the standard 185 cos of wbc n i know it was the flues that made it worse cos i started the tx at the start of last yrs flue season n swine flue was everywhere round here too so thats another thing il not b doin next time....startin tx in flue season especially without flue shots.

mayb if ur health is gr8 in future u could start tx again n with help from procrit n neupogen etc which i think r there names,they help ya white n red cells,but im sure u know of that already.i couldnt get help with the medication that helps my wbc cos i live in australia n they dont prescribe it here,if i had of had the neupogen i know i could have stayed on a full dose of interferon.

as for ya liver funtion tests all gettin a bit worse since u r off tx  welll not ev1s liver tests get worse when tx is over,i know a few whose have immproved even tho not cured but we r all diff.well i dont know but imo it might not b the virus gettin worse cos its just got stronger by itself but its cos ya immune system is down n out n it cant fight the hep c aswell as u used too but that should improve as ur immunity immproves.my immune system is all back to normal now n trust me i had flues,gastro bugs, infections in my eyes,ears n cuts that wouldnt heal etc etc when i was on tx but im ok now.

i wish u all the best n hope ur health improved soon,hang in there.
im very tired tonight n i wasnt goin to comment cos im too tired to prob make sense but i thought id just throw by 2 cents in n tell u my story,i really sympathise wit u n its not fair take care n il say a preyer for u :)