Hi, I am a newbie. My viral load is over 4,ooo,000. I am Genotype 1a. I am waiting to hear when the insurance will send my the shots. I hear they can take a while. I am anxious to begin to rid myself of this Hep C with treatment.
I went to a oncologist yesterday to talk about my low platelets (124). I found out I also have high red blood cells that suggests I need bloodletting! Dr. is going to do cancer tests and bone marrow biopsy. Have any of you had this happen with hep C? I searched around and saw nothing but low #'s. Hopefully, this is related to Hep C, but I am scared. I worked painting billboards with lots of toxins back in the 70's and 80's.
I am 54. Also have temperatures that go from 95-99 degrees. Trying to figure all your lingo but some of my blood test numbers don't match up to the ones on the board. Glad to find you all.
I quit drinking over a month ago, but am still taking Fiorinal W/codiene, which has asprin, for migraines. I have them alot!
Is this a bad thing to take?
bloodletting? I've never heard of that in this day and age EVER!
Regarding the Fiorenol...be careful to take them as little as possible. First off it's a very strong med and not meant to be taken all of the time...and medications like aspirin can mess with your blood and codeine all of it is NOT good for your liver basically. You know your liver considers things like that poison just like it does alcohol. I am so glad you aren't drinking! Some people don't understand how devastating it really IS while you have the disease. It is so magnified that our livers can easily progress so rapidy.
Best of luck. In general take as little medication as you possibly can - if you have hep c then you most likely have some form of liver damage.
Have you had a biopsy to tell you where you stand with that?
SF: As Kalio said, sorry to be meeting like this. I don't know anything of help about the oncology aspect of things; Medhelp probably has a board tvhat discusses those matters.
Your platelets are not so low as to be worried by the low platelets themselves, but you would like to know the cause. It could be the liver. It's a big filter of sorts, and when it gets damaged, things back-up some, and that causes platelets to become sequestered in the spleen. I have that situation going on, but our bodies have such an ample supply that the low platelets aren't a worry.
I don't know the meds you asked about. But in general, my feeling is the liver does so much filtering and cleaning throught the day, that a couple pills here and there aren't going to make a difference. I guess it depends on the pills and the liver though, so you should check with your doctor or pharmacist.
Asprin is a blood thinner. As such it might not be advised when your platelets are low. But again, while yours are low, they're no where near the problem zone.
Interestingly, the treatment for hep C lowers red blood counts, so starting high might well be an advantage. But as with low platelets, you certainly want to find the root cause.
Welcome. Sick around, ask some questions, have a laugh, and it will help you as you learn about what's going on inside your body.
NYgirl: <i>bloodletting? I've never heard of that in this day and age EVER!</i>
It's phlebotomy. Among other things, they use it to lower iron loads. Don't ask how I konw :(
<i>You know your liver considers things like that poison just like it does alcohol. </i>
Man. I knew my liver had taken on a mind of it's own. But cognitive reasoning? Amazing. Maybe that's where my brain cells went. That would also explain the mild enlargement that's been reported.
I used to take Fiorinol with codeine for my headaches - it's powerful stuff, since she said she takes it "alot" it can't be helpful to the liver situation. I remember when I used to have them I'd take them "alot" and was in fact pretty messed up on them for a while. Not just the codeine but whatever is in there can really play with your mind so I'd imagine your liver as well.
Mr. beagle posted this in another thread today, some of the abbreviations you'll read here.
Bone marrow biopsy - ouch. Have you had a liver biopsy?
PCR: POLYMERASE CHAIN REACTION (VIRAL COUNT)
AST AND ALT: LIVER ENZYME
VL: VIRAL LOAD
EVR: EARLY VIRAL RESPONSE
RVR: RAPID VIRAL RESPONSE
SVR: SUSTAINED VIRAL RESPONSE--- WHICH IS WHAT YOU WANT TO BE AFTER TX IS DONE.
Thanks for your responses! The oncologist was referred to me by my Dr, who said he is a hemotologist. He is both, just freaked me out when I went and he told me all this stuff. He said it all could be related to hep c and we will find out! It seems like a bunch of stuff have come up since first tests. I had a ERCP after a swollen bile duct was found,(fine now) also says I have a fatty liver. No clue what that is.
On my way to sin city (Vegas) and I can't even drink! I guess gambling will have to do!
These red counts are hopefully related to hep c and not cancer.
My doc referred me to an oncologist/hemotologist too, and I was freaked out also. It actually turned out great (the hemo part) because I went there weekly to stay on top of all the blood stuff. As for the bx (assuming it's on a 1-4 scale), HCV is a slow mover and can take several years to progress from a stage to another. Although there are people who report quicker progression. What happens in Vegas stays in Vegas. Except on an anonymous forum where you need to report all the sleazy stff that happens.
It sounds like it's time for any quick biopsy to see where you stand. Since you know now they aren't the torture that we all THINK they are going to be (LOL) I'd suggest going and having an accurate number done.
I mean it is a SLOWLY progressing disease but there are so many variables you can't ASSume that it hasn't gone farther than a 2 or something you know?
It's definitely a better safe than sorry thing if you ask me. But that's just my opinion. :)
It just reminds me of that old Humphrey Bogart movie...when they are in the river...I can't even think about it. I think my mom shared the movie with me when I was WAY too young causes I am traumatized by leeches and ticks and the whole shebang and that is what it makes me think of!
I just wanted say welcome - this crew is a great bunch with alot of good information. I agree with NY you may want another biopsy before you move forward. Come back and post often - we all have to stick togother!
For some reason my new Dr. hasn't recommended a biopsy. I am glad in a way...sort of afraid of what it will reveal. I know it should be done.
Wishing the D*mn insurance Co. will get off their asses and send the shots.
Worried about leukemia or liver cancer... but I am trying to be optimistic.
NY: Haven't done the test you suggest, but I bet my Hemo/oncologist has ordered it.
I am working on getting my blood work organized. Amazing,(or maybe not!) that my GI doesn't recieve my tests before I do. I had to tell him my genotype and Viral load. Is this a problem.
I'm in Vegas now and loved hearing about the leave it in Vegas. Next wednesday I go for biopsy of marrow. They wanted me in on Monday morning, but I am here. Working on having good thoughts. My therapist says I should go to Red Rock or some park and have a spiritual experience,. He has done a lot of research on meditation and healing. Says it is amazing!
Welcome to the forum, You'll find much help here. We are not drs. but I have learned more here then from the medical field.
Ny girl, this is for you too. How are you doing tonight?
I think this what bloodletting is:
Bloodletting is when your blood is like to rich and there are to many red blood cells which can lead to iron toxic in the liver,etc. So what they do is they take blood out sometimes once a month or when needed.
Flguy---Thanks for posting the list, there has been a lot of new people lately and I forget they don't understand what we are talking about.
You may remember this, it was about a month ago and someone came on a thread and wanted to know why are we all always talking about Texas(tx) is that where everyone on here goes to treat.
That's when I realized we needed to post the list more.
I think you taking the meds with the aspirin in it is helping you for now. When your blood is that rich it becomes thick and can cause blood clots. So until you have every thing in your blood screened I would keep taking it. When you start treating for hep C that's a different story. I hope every thing works out.
You probably enjoyed the Tarzan movies where the poor porters were eaten by alligators didn't you. Debbie I have a fiend that has to donate blood pretty often because he makes to much and he calls that a bleeding. My lab technician sucks it out of me about every week or so and she calls it samples. I know the exact part of the movie you are talking about and poor ole Mr. Alnut pulling that boat. Yuuuuuuuuuuuk. What boat did they sink in the big lake? The Louisa:) Dale
i have 1a and i had low platlet count 28 found out spleen had grown to 6 times normal size had it removed platlets in 1 week whet to 434 so now i start treatment for hep c actually tonite will be first injection dont really know what to expect diff for everybody
I have read about the Protese Inhibitor trials. My Dr. says he doesn't have any trials but there are clinical trials in SF. From what I read, I have to go through one round of tx and not respond to be elilible.
Wondering if insurance pays for this? Dr. says many ins. co's won't pay after 12 weeks with no response.
Hi thanks for posting that on having your spleen removed.
I have an enlarged spleen also. I have thought about having mine taken out.And my platelets are low also. Mine were 79 starting treatment last time. They stayed around 50 through out treatment. I Start treatment for the second time in June. Good luck on your treatment and thanks for posting. Keep coming back, Take care, Deb
Advil is better. Aspirin and Tylenol on a steady basis are hard on the liver. For an anti-inflammatory, ask your doctor about taking Ibuprofen. I take 800mg one hour before I have to do physical activity. Helps a lot. Doctor said I can take up to three a day, but I don't want to push my luck. I take one when needed.
Get a timely blood test to keep track of what's going on. There are people with a much higher count than you. My doctor has one patient at 14,000,000. He's still around.
Ask your doctor if you can afford to wait 1-2 years, until the VX-950 Protease Inhibitor comes out. This is touted as being the "miracle" drug and has had a lot of success with minimal side effects. Ask your doctor... Good luck and welcome...
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