Hell honey, You live in Tx. Write a letter to the Crawford paper letters to the editor w/ a plea to the Bushes. If that doesn't work, e-mail me at ***@****. com and we'll flood the whole town, not just the paper,Keep the faith! Joni
Happy Holidays and Thanks for sharing. The time and efforts you put in to help others is amazing and much appreciated. It ispires me to hang in there for new people even if it's just to give comfort and words of encouragement. You are giving the gift that keeps on giving!
Off for the holidays,
Mr. Jones
willing your up early today...
anyway i'm getting a lil worried and nervous about finishing up and if i am still undetectable....prior to being dx, i was getting these rashes nickle to quarter size, on back, stomach, arms, family doc tried steroids, dermatologist tried some creams and said stay away from dryer softner sheets and hot showers..didn't help a whole lot..so when i started tx , this type of rash (different then riba rash) dissapeared completely....until now...got a new one quarter size on back...and yes it is winter and yes the showers are lil hotter and longer...soothes those aching bones...but it just makes me nervous that this could be a sign of the return...well get 48 wk pcr in about two weeks...guess this is out of my control so...i'm gonna finish up the riba on jan 2 get drawn and hope to heck the dragon is gone for good..
wanna wish everyone the happiest holidays
its good to hear i am not the only grinch this season
ken
Erin, I am also confused. If you test positive even <50 then aren't you a relapser. At a 48 week test wouldn't this mean tx didn't work? Could you still get an SVR? I don't understand. LL
Thanks for the test info Willing. All the info,links you sent have been very helpful. Aren't you coming to the end of your tx?
LL
though the lower-limit, TMA-based tests are the "new kid on the block" they <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12149349&dopt=Abstract">compare well</a> against the older, less-accurate PCR-based tests. And the more sensitive tests do detect continuing infection in patients who would be classified as "undectable but relapsed" by the less-sensitive tests (<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11693334&dopt=Abstract">see</a>, or this <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12467774&dopt=Abstract">review</a>). Erin, I was surprised by your last post: a post-tx VL of 165 iu/ml might not remain that low for long, and it certainly makes sense to retest, but, if it reproduces, how can it not be relapse?
was up heppos. i have end stage liver disease, portal hypertension enlarged spleen, i need to be screend for a transplant. I'm waiting on the Medicare 24 month period, I have one year to wait as of January. My Dr. says we need to find a way to get the time period waived if possible because if life expectancy is two years after the first bleeding my two years will be up six months before medicare kicks in. Has anyone had this waived? If so how? My Dr. is getting in touch with social security. He's written a letter that my wife is going to send with her letter to Governor Rick Perry, Senator Hutchison, Joe Crab, and anyone else that might listen. Any other ideas would be greatly appreciated. my dr. has put me on tranzodone it did not work at first but after a couple weeks it started to work for sleep. i was on pegasis and riba three months before ending the tx. my blood work went thru the walls and took me off tx. first blood test after stopping showed the virus was undetected. second one showed the virus was back. dr. sayed no tx. the pegasis has deterated the cartilage lineing between the joints in my knees,shoulder, and hips the pain sometimes is unbearible. the dr will only give me darvon 65 mlg. two a day. i have been off tx. for about a year and still have the fog and the chains holding me back. thanks for listening, liv4GOD GOD BLESS YA'LL [TEXAS]
Ken: yeah, I was up at 3:00, couldn't sleep. Skin problems have been a pain for me too - the itching keeps me up at night. Could just be the end of tx or maybe it's the constant rain (if you haven't had this rash since last Jan/Feb maybe it's seasonal?) Hell, why start worrying now, we've got 6 more months to recover and think about relapse. Friday's coming up ...you're coasting downhill now.
Layla : I'm getting close too, six days behind Ken. Dheana should be about to finish, and newb as well. Hope you're doing well - you've got a long-distance runner's steady pace, it's good to hear it.
Erin: I see your point but a chronic infection that persists at 15iu is, in my untrained opinion, still a chronic infection. It may not fit the usual clinical profile, but that's probably because we're still fairly clueless about the connection between blood VL and cell-tissue infection. My hunch, based on the papers showing residual cell infection with no detectable blood VL is that this sort of profile may fit the few late relapsers who keep popping up. Anyway, as always,thanks for your comments and insight.
Happy Holidays everybody. The grinch.
Whew...all this thinking on X-mas eve!
What I mean is that although you may want the info as a patient (the exact number or the lowest sensitivity of test), it doesnt change clinically what I do.
Lets say Mr Jones wants the ultraquant test to <10 IU/ML...I oblige (because I like to make my educated patients happy)..and at week 48 (end of treatment), it registers at 15 IU/ML. What would I do with this patient? Are they an "official" relapser with only a 15 IU/ml PCR? I dont buy it and I certainly would retreat them based on a 15 IU/ml reading on a test that only goes down to 10 IU/ml. I would recheck in 6 months..but what if it comes back 15 IU/ml again. Is this real? Do you classify this patient as a relapser? Do you retreat? Are they at risk for cirrhosis or liver cancer? These questions simply arent answerable at this time...so you are left rechecking in another six month, then yearly..ect Unless their PCR went up (to the level detectable by a qual), I would argue you would do nothing differently than the below senerio....
Lets say Mr Jones has no preference so at week 48 instead I do a qual (down to 300 or 600 IU/ml, which is what all the "success data" is based on). He is "negative" at week 48 and then again at six months therafter. We pronounce this as a cure and quote the patient a 98% likelyhood that they will never deal with Hep C again...We test yearly every five years and if still negative, the patient is 99.5% never to deal with Hep C again.
I would argue that, clinically, you would do nothing differently with a quant of 15 IU/ml than a negative qual. Both have the potential to be wrong (a patient who is at 9IU/ml looks the same as one with 0 IU/ML), but the ultraquant is a significant cost increase for,what I would argue, as clinically insignificant data.
My 2 cents from the other side of the trenches
GI.PA
The standard of care is to do a quant at week 12 (because you want to measure the 2 log drop, so you want an absolute number). At week 24 and thereafter, a qualative or quantatitive with a sensitivity to <600 IU/ML is probably sufficient.
The problem with the ultrasensitive test, besides the extra cost is that is really easy to interpret a result of 4 million, but what do you do with the test when it read 165 IU/ml..?? Whe you are counting two log drop, it is one thing...but at week 48 or six months post treatment, do you classify someone as a relapser with such a low viral load? An exact number under 600 is just too much extra info.
If a patient has a 6 month post treatment PCR of 165 IU/ML would you classify this a failure? A SVR? Would you retreat (not likely)?...This just opens up too many cans of worms for my taste. There is also some question to the accuracy of the test at such low levels.
Past week 12, I stick with the standard qual or quant with a sensitivity of 300-600 IU/ml.
My 2 cents..There are many ways to skin a cat...but you are stil letf with a pile of skin and a nekid cat.
GI.PA
Hi Layla, the point of doing further VL tests on tx after you clear is to check for "breakthrough" - resurgence of the virus after it dropped below the detectable level. Basically this saves you the aggravation of further tx past the point where it's doing any good. Breakthrough is unlikely (I don't have a cite but recall <10% between weeks 24 and 48) so some Drs are reluctant to "waste" the test. On the other hand, the Berg study showed somewhat higher breakthrough between weeks 48 and 72 so, IMHO, continued testing during extended tx seems a good idea. Quant or Qual doesn't really matter, the sensitivity of the test does. Sensitive tests go down to 5 or less IU/ML. Quest's <a href="http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TH_HEPTIMAX.htm">heptimax</a> and ngi/labcorp's <a href="http://www.labcorp.com/pdf/HCV_QuantaSure_LabFacets_1259.pdf">quantasure</a> are two of the most common sensitive tests. If insurance costs are no problem I'd definitely go for the more sensitive test: the pubs that accompanied the development of TMA technology (an alternative to PCR used for the more sensitive tests) showed that a proportion of "relapsers" actually had detectable low-level VL at EOT. Not that this really changes anything, but it lets you know whether you're really a relapser or a partial-responder and lets you stop tx sooner if it's not working.
Can anyone here give me the names for the different qual/quant test/labs and what they measure to. I had them saved and I can't find the note. LL
I am going to have labs in January and my doc wants to do a PCR even though I am doing extended tx. I assume this is for a 48 week benchmark for their record. When you do this do you do a quant ot qual test? It seems to me doing the less sensative (forget which is which) is a waste. If your going to test anyway it seems you should do the more sensative since if the point is to test if the virus is still there wouldn't yo want to be absolutley positive? I ask my RN at the office and he wasn't real clear and my docs appt is after the labs. Could you give me your opinion on this. I would appreciate it. LL
Agreed..as long as your liver test are being monitored yearly (as they should in every healthy individual) and there is no sign of elevation, I would be comfortablel using trazadone.
GI.PA
Yes, Erin our PA here said she prescribes a variety of anti-depressants and they all (even most medications in gen'l) have the warning about liver disease, she said they dont worry about it. You would have to have a really sick liver and a high dose of ad's to cause a problem. most package inserts also list headaches, nausea, appetite loss, insomnia, stomach ache/upset, itching etc (same sides we get with our tx). If even one person had those side effects during trials they had to list is as a possible adverse reaction.
i use trazadone as it helps with sleep too. and it doesnt require such careful weaning off of when stopped. it seems to help. use zanax as needed as well now.
someone told me they had 3 doctors tell them not to use trazadone with liver disease but i still use it. just dont tolerate other ones. guess the liveer has to filter everything. i just try to use as low of doses as possible with anything and squeak by.
I know some doc's "especially general practioners" are against people with Hep taking anything, even vitamins. I can understand them erring on the side of caution. I find Trazodone easily obtainable and inexpensive compared to other ads. What I find works best is to exercise with the ads. I will keep getting my ALTs checked and hopefully in 6 months I won't need the Trazodone anymore. Thanks to everybody for the response, this site is a godsend. One more thing, this election we need to think about voting for a candidate who supports universal health care.
Tom G
I took trazadone for a while. It just didn't work for me. If you look @ most drugs it has a warning about liver disease. I think no longer than we have to take certain meds., it doesn't bother us. I was worried about some meds I was on...mostly anti-depressants...so, dumb me tried to cut back! My shrink had a fit!!! So now I take exactly what they give me. I am post tx., since Nov 6th., finished 48/48 and have been SVR the whole time. Now I only have to take 150mg effexor 1 a day, I still have to take 4 klonapin a day (but usually only get 3 in a day)don't tell my shrink!!!!!) lol And I take seroquel 1 @ nite for sleep. But today had to call G.P. for some vicodin...still having aches and pains. Good luck to you and many prayers. Cindee
You probably have no concerns in this area. It would be a good idea to "remind" the doc with each new presciption or change in meds, though.