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Does anyone have problems with Lymph node swelling
Hello. This is my first time hear. I am 40 years old. I was diagnoised with Hepatitus C About 12 months ago. Doctors said I have had it about 5 years. My liver biopsy showed a level 3. I have talked to people and they talked about their viral lode. My doctors have not discussed this with me. Is this important? They were going to start treatment last November,but changed his mind. I have a lot of trouble with my lymph nodes swelling. All biopsys have come back negative for lymphoma. I keep a chest infection and the doctors say this is from the hepatitus C. They dont like to give me anything for pain. I have gained a lot of weight in my stomach,witch I believe is fluid. I had my spleen removed 6 years ago due to an accident. I am scheduled for a colonoscopy next week because they have found blood in my stools.Doctors say my liver levels are getting higher. I would appreciate any thoughts or input on this matter. Thank you.
Hello Erin. I would like your opinion also. I have not started tx yet-hope to start in the next 2 weeks. Recap: w/f, 35y/o, genotype 1a, VL 301,000 and liver bx II/II. Also, there is a moderate amount of fat in my liver. My hgb runs around 9-10. I take 1 65mg iron tablet qd. My Rx for Ribavirin is 1000mg. Should I try to get doc to increase to 1200? Also, does fatty liver decrease chances of SVR? Also, I have slight Aortic Insufficiency. Will this be a factor in riba dosage decrease if hgb drops?
Thanks,
Moonbaby
Thanks,
Moonbaby
Firstly a lot rides on your week 24 (aprox) Hepimax. For if it is detectable, the story ends there, as your chance of SVR is to low to justify treatment with the degree of sides (bad anemia, need Procrit and Neupogen..).
With a hemoglobin of 7-ish, I agree with your doc for stopping Rib for a bit and starting iron. There just isnt any other choice with a hemoglobin that low. It sounds as if you were the perfect cantidate for procrit, you simply ran out of iron to power the red-blood cell factory. I would keep you on iron and off Rib until your hemoglobin is at least 10, and add back the Rib (plus iron) 200mg, then 400mg, then 600, then 800mg, increasing a step every week. If you started to fall again, you could increase the Procrit dosage, anything to keep you at the Rib 800mg level for the remainder of your voyage.
This is an art...there are so many different ways to approach your case.
I might also consider going a few weeks past 48, if the insurance company agrees...perhaps to give that extra punch since you were on reduced Rib for a while....totally non-textbook.
Good question.
GI.PA
With a hemoglobin of 7-ish, I agree with your doc for stopping Rib for a bit and starting iron. There just isnt any other choice with a hemoglobin that low. It sounds as if you were the perfect cantidate for procrit, you simply ran out of iron to power the red-blood cell factory. I would keep you on iron and off Rib until your hemoglobin is at least 10, and add back the Rib (plus iron) 200mg, then 400mg, then 600, then 800mg, increasing a step every week. If you started to fall again, you could increase the Procrit dosage, anything to keep you at the Rib 800mg level for the remainder of your voyage.
This is an art...there are so many different ways to approach your case.
I might also consider going a few weeks past 48, if the insurance company agrees...perhaps to give that extra punch since you were on reduced Rib for a while....totally non-textbook.
Good question.
GI.PA
Hi everyone,
Sorry to butt into the thread but we're full.
I receieved a call from my nurse today informing me that my hemoglobin dropped to 10.5 I believe. He wants me to reduce my Ribavarin dose from 1000mg to 800mg per day for two weeks to stabilize my levels.
I weigh 154 pounds, down from 168 at the start of tx and on week 31 and UNDETECTABLE!! YEAH!!
Thanks! I get nervous when I have to drop dosage levels (I had to drop down PegaSys for 3 weeks until I started Neupogen.)
Scott
Sorry to butt into the thread but we're full.
I receieved a call from my nurse today informing me that my hemoglobin dropped to 10.5 I believe. He wants me to reduce my Ribavarin dose from 1000mg to 800mg per day for two weeks to stabilize my levels.
I weigh 154 pounds, down from 168 at the start of tx and on week 31 and UNDETECTABLE!! YEAH!!
Thanks! I get nervous when I have to drop dosage levels (I had to drop down PegaSys for 3 weeks until I started Neupogen.)
Scott
Does dropping the dose for two weeks impact the odds? (I forget to ask the question).
There is a body of thought that says that 800mg of Riba a day is sufficient. I was in a trial last year run by Roche in which all patients took 800mg a day. I am sure that a couple of weeks at this dosage will not harm you.
The dosage reduction guidelines say to drop the Rib if your hemoglobin is LESS than 10 or drops significantly and you have heart disease. If this is not you, I would push them to instead frequently monitor your blood count (say every two weeks). Many patients ride right there around 10 and never go lower.
Just my 2 cents.
Erin
Gi.PA
Just my 2 cents.
Erin
Gi.PA
Dear Erin,
I'd like your opinion, please. Perhaps you've read my Low Red Count" posts; here's a recap. I'm 1b; female, 50's; started w/over 8,000,000 copies; VL <50 at 12 weeks; now in week 26 of Pegasys/Copegus tx (180/1200).
Neupogen has brought my WBC/ANC up nicely, and I've been on Procrit since week 3. Recent history of Hgb:
6/27 9.3 (had been in the 9's most of these months)
7/14 8.0 (went out of state, could not be reached)
7/23 7.2
8/4 7.6 (after returning)-told to stop Ribavirin.
Heptimax drawn; hope to get results next Monday.
8/11 8.5 Ferritin, etc. checked; iron reserves depleted.
Started taking 108 mg elemental iron (4 Fergon) daily
Second week w/o Ribavirin.
I'm starting to feel much better, mentally more alert; but I'm seriously worried about that Ribavirin. What's your advice?
Thanks in advance.
Maj Neni
I'd like your opinion, please. Perhaps you've read my Low Red Count" posts; here's a recap. I'm 1b; female, 50's; started w/over 8,000,000 copies; VL <50 at 12 weeks; now in week 26 of Pegasys/Copegus tx (180/1200).
Neupogen has brought my WBC/ANC up nicely, and I've been on Procrit since week 3. Recent history of Hgb:
6/27 9.3 (had been in the 9's most of these months)
7/14 8.0 (went out of state, could not be reached)
7/23 7.2
8/4 7.6 (after returning)-told to stop Ribavirin.
Heptimax drawn; hope to get results next Monday.
8/11 8.5 Ferritin, etc. checked; iron reserves depleted.
Started taking 108 mg elemental iron (4 Fergon) daily
Second week w/o Ribavirin.
I'm starting to feel much better, mentally more alert; but I'm seriously worried about that Ribavirin. What's your advice?
Thanks in advance.
Maj Neni
revenire,
I had to decrease my riba to 800mg (from 1,200mg)3 weeks due to my rbc drastically dropping and falling below the limits. I also had to start weekly injections of procrit to assist my count.
I am in my 16 week of treatment, and haven't cleared the virus as of week 12. I am 1a, and suggested treatment is 48 weeks.
I had to decrease my riba to 800mg (from 1,200mg)3 weeks due to my rbc drastically dropping and falling below the limits. I also had to start weekly injections of procrit to assist my count.
I am in my 16 week of treatment, and haven't cleared the virus as of week 12. I am 1a, and suggested treatment is 48 weeks.
Erin -- Thanks for the advice. I emailed my nurse to get the exact count of my HGB: I believe he said it was 10.5, last test results I have show it at 10.7. What can happen if it drops below 10?
I guess I will wait until Monday and then proceed from there. Reducing the ribavarin makes me nervous about SVR odds.
DownThisRoad - I had to reduce my Pegasys down 25% for 3 weeks while I waited to start Neupogen. My WBC counts rebounded nicely but now the HGB dropped ... maybe I will need Procrit too.
Scott
I guess I will wait until Monday and then proceed from there. Reducing the ribavarin makes me nervous about SVR odds.
DownThisRoad - I had to reduce my Pegasys down 25% for 3 weeks while I waited to start Neupogen. My WBC counts rebounded nicely but now the HGB dropped ... maybe I will need Procrit too.
Scott
Many patients stay right about 10 and unless you have a heart disease history, this is perfectly acceptable. If you were to start to drop below 10, a temporary dosage reduction by 200-400 mg may be advised. This is an arbitary number and is usually associated with "symtomatic" anemia (shortness of breath, weakness, pale coloring, fatigue). In patients with heart problems this can result in poor blood supply to the heart and heart damage which is why the dosage reductions are so much stricter in patients with heart disease.
As soon as you drop below 10, the Procrit option should be persued (if you doctor is agreeable). Procrit is a medication which stimulates your body to make more red blood cells. It is very well tolerated and the safety well established..It is just not yet "FDA approved" for this indication (although it is used a lot in cancer treatment patients and is highly marketed..you might have seen the commercials). It may take 2-3 weeks to get the authorization and get the Procrit, but usually in a few weeks your counts are up enough to get back on full Rib dosage.
Talk to your doctor...The more you know..the more they know.
Erin
GI.PA
As soon as you drop below 10, the Procrit option should be persued (if you doctor is agreeable). Procrit is a medication which stimulates your body to make more red blood cells. It is very well tolerated and the safety well established..It is just not yet "FDA approved" for this indication (although it is used a lot in cancer treatment patients and is highly marketed..you might have seen the commercials). It may take 2-3 weeks to get the authorization and get the Procrit, but usually in a few weeks your counts are up enough to get back on full Rib dosage.
Talk to your doctor...The more you know..the more they know.
Erin
GI.PA
In reference to your "chronic chest infection"
Firstly...Never let the docs blame your Hep C for extra-liver (outside the liver) problems. Can Hep C cause extra-liver stuff, yes...But are the causes usually NOT hep C related...wide majority of the time yes. Internists and family docs are too quick to think of Hep C and the easy out and not work-up a Hep C patients symtoms appropriately. It is only after a complete work-up for other causes can one "assume" that it may be hep C related.
In reference to your enlarging belly...
There are only three things that destend the belly...fluid, fat and stool/gas. If you have had an ultrasound or CT of the abdomen lately (last six months which is typically the case when one gets evaluated for their Hep C), and it showed no acites (fluid in the belly from advanced liver disease), then it is unlikely acites. This is supported by your findings of only a grade 3 (either inflammation or fibrosis noted on biopsy)...which is middle of the road damage and not really advanced liver disease .
Stool/gas: Now you have some blood found by chemical test in your stools, so a colonoscopy is indicated. This blood is NOT related to hep c or liver disease and may show a reason to why you are bloated (blockage, polyp, inflammation of the colon). Make sure you talk to your doctor about any other bowel symtoms you are having (constipation, diarrhea, lower abdominal pains).
And thirdly fat....I guess I dont have to elaborate on this one..we all know too well this strugle.
Take this one step at a time, be persistant and involved in your health care.
Gi.PA
Erin
Firstly...Never let the docs blame your Hep C for extra-liver (outside the liver) problems. Can Hep C cause extra-liver stuff, yes...But are the causes usually NOT hep C related...wide majority of the time yes. Internists and family docs are too quick to think of Hep C and the easy out and not work-up a Hep C patients symtoms appropriately. It is only after a complete work-up for other causes can one "assume" that it may be hep C related.
In reference to your enlarging belly...
There are only three things that destend the belly...fluid, fat and stool/gas. If you have had an ultrasound or CT of the abdomen lately (last six months which is typically the case when one gets evaluated for their Hep C), and it showed no acites (fluid in the belly from advanced liver disease), then it is unlikely acites. This is supported by your findings of only a grade 3 (either inflammation or fibrosis noted on biopsy)...which is middle of the road damage and not really advanced liver disease .
Stool/gas: Now you have some blood found by chemical test in your stools, so a colonoscopy is indicated. This blood is NOT related to hep c or liver disease and may show a reason to why you are bloated (blockage, polyp, inflammation of the colon). Make sure you talk to your doctor about any other bowel symtoms you are having (constipation, diarrhea, lower abdominal pains).
And thirdly fat....I guess I dont have to elaborate on this one..we all know too well this strugle.
Take this one step at a time, be persistant and involved in your health care.
Gi.PA
Erin
So sorry that you are going through all of this. The viral load number is important so that when and if someone starts treatment, the blood work will show the viral load dropping or not dropping.
Has anyone else been told by their doctor or heard of chest infection and hep C being related?
Has anyone else been told by their doctor or heard of chest infection and hep C being related?
It was because of my lymph nodes.He want,s to start as soon as he can .But waiting on ct scan results to see if lymph nodes
are still swollen.thank you
are still swollen.thank you
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