Author Topic: Do I need to be vaccinated for A and B and will it affect labs for genotype ? (Read 24884 times)

Lee1117 · « **on:** December 05, 2015, 01:07:46 pm »

Hello, I was recently diagnosed with HCV. My Dr. doesn't seem on the ball with things. Diagnosed in Sept but still haven't gotten genotype and fibrosure done. My question is do you need to have vaccination for A and B just because you have C? I am not at high risk for either. I hear that the vaccination is several treatments and I need to get the other testing done asap. My Dr. feels that I have advanced stages of liver disease because of my symptoms. My AST is 173, ALT 106 VL IS 623320. My spleen and portal vein are enlarged. These results are from October. The numbers have risen quickly and I will be having labs done in a week or so for genotype. Will starting vaccination before those tests be a problem? Any advice would be appreciated.

gnatcatcher · « **Reply #1 on:** December 05, 2015, 05:19:18 pm »

Lee, while you wait for a definitive answer, I can shed partial light on your question. When I saw the hepatologist in May to ask about getting treated with Harvoni, he wanted to find out if vaccinations I had had twelve years earlier for A and B were still effective. The lab results showed that I was still reactive to A but not to B. I had gone through the B series of vaccines TWICE because I hadn't stayed reactive the first time, so I assumed the hepatologist was going to put me through the B series a third time, but he said he wasn't because some people just can't seem to stay reactive and I must be one of them. (This hepatologist has for decades been the main HCV go-to guy for a major hospital system.) Thus, I went through the Harvoni treatment without being protected from Hep B.

If there is some reason your medical system can't get you a FibroScan quickly, could they do a FibroSure (or similar blood test for fibrosis) when you get the genotype test? You're mostly on your way and seem to have educated yourself well. Good luck.

Gnatty

Lee1117 · « **Reply #2 on:** December 05, 2015, 07:22:50 pm »

Gnatty ,Thank you for your response to my post. I am not sure if the vaccination is going to hold me up with the blood work. I have not had much testing done to date. Thanks to this forum I am getting a better understanding of all this. My Dr. was sending me for repeat testing on my labs but had not asked for genotype or f score so I questioned why. He said he really doesn't deal with HCV patients because it is hard to get payment from insurance companies. He told me he was able to get it for a patient with cirrhosis but really doesn't want to deal with the hassle. He also doesn't believe in some of the testing because my numbers and symptoms tell him what he needs to know. I told the Dr. I need the documentation to move forward and I would prefer to deal with his associate. He said once I get the results I can switch ... I guess he wants to make sure that he doesn't give up his cash cow if my liver disease can make him money. That is why I wanted to know if the vaccination is necessary if I am not high risk. I don't want to hold this up any longer. Everything feels so bloated and I don't want to prolong any testing if it will slow things down. I appreciate all your help and information you gave on my previous post. Thanks again Gnatty. I wish you all the best on your journey!

gnatcatcher · « **Reply #3 on:** December 05, 2015, 08:36:42 pm »

Lee, if you can't find a better specialist covered by your insurance to help you get treatment pronto, there is a lot of information on these forums about how to get insurance approval. Also, there are organizations that can help you pay for treatment. Here are two helpful posts to get you started:
http://forums.hepmag.com/index.php?topic=2665.msg34668#msg34668
http://forums.hepmag.com/index.php?topic=3530.msg32707#msg32707
Rooting for you,

Gnatty

beto · « **Reply #4 on:** December 05, 2015, 10:16:24 pm »

Lee...

If I were you I'd get another doctor...asap. Good luck my friend,

Mike · « **Reply #5 on:** December 07, 2015, 08:00:52 pm »

Hi Lee,

The Hep A & B vaccinations are preventive - that is, you don't want to contract Hep A or B if you have Hep-C, as these can really do a number on the liver.

The vaccination wont impact your tests results for Hep-C.

I would also recommend getting another doctor if the current physician wont advocate for you to get treatment (at least the doctor was honest and upfront about it - sheeish).

Anyway, you've found a good forum to help with support, education and a shared-experience.

Best wishes, Mike

Lynn K · « **Reply #6 on:** December 07, 2015, 09:46:09 pm »

Hi Lee and welcome

I had hep c for a lot of years and after 30 years I developed cirrhosis.

When I was diagnosed with cirrhosis my doctor had me immediately get vaccinated for Hep A and B. He also had me get the pneumonia vaccination and an upper endoscopy to check for esophageal varicies. Those are enlarged blood vessels in the esophagus that can cause a serious bleed if they are present.

Just to add ALT, AST and viral load do not relate to severity of liver damage. But yes having and enlarged spleen, portal hypertension and a low platelet count could indicate liver damage.

Good luck
Lynn

The Terminator · « **Reply #7 on:** December 08, 2015, 11:45:35 pm »

i found out in 1998 hcv positive started the A&B vaccinations a week later,finished last B shot 1999,personally i think its good to get the vaccinations

Lee1117 · « **Reply #8 on:** January 26, 2016, 04:03:49 pm »

I just wanted to thank you all for your positive input,well wishes and suggestions! Still having a hard time with posting from my phone so much apologies to all that I haven't responded to each of you. Lots of things in the making. Found out genotype is 1a and fibrosure is f3 bridging with A3 severity. My CT scan shows mild surface nodularity of the liver so although my favorite doesn't exactly say cirrhosis , the scan and enlarged spleen does. Can't get a straight answer just how bad this is but on the positive side I am on day 2 of Harvoni! Just wish I could get straight answers about how bad the cirrhosis is. I have gotten first set of a and b vaccination and will get next round the 1st week of February. So Yay me, finally moving along! I hope everyone is getting some positive news and are on their way to being cured. Positive energy and wishes to all!

Lee1117 · « **Reply #9 on:** January 26, 2016, 04:11:08 pm »

Favorite was supposed to be F 3 fibrosure but unfortunately my spell check didn't believe me and posted what it wanted.

gnatcatcher · « **Reply #10 on:** January 26, 2016, 04:22:34 pm »

Lee, glad you are on Harvoni now. It used to be thought that cirrhosis never reversed itself, but there is mounting evidence that, once the HCV is eradicated, the amount of cirrhosis often diminishes. My hepatologist, who has hundreds of HCV patients, has said if my next FibroScan (which was 19.5 kPa before Harvoni) is <12 kPa, I won't have cirrhosis any more. There's another forum member (beto) who had an even larger percentage drop in kPa (from "14.5 to 6.1 in about 5 months"). None of the tests to measure fibrosis/cirrhosis, not even biopsy, is 100% accurate (note that my FibroScan result differed markedly from my FibroSure result). Harvoni works quickly -- by the time you get your first lab results, your viral load, ALT, and AST should have gone down a lot, which will mean your liver is already functioning better.

lporterrn · « **Reply #11 on:** January 26, 2016, 04:31:56 pm »

Gnatty,
I just saw your post. My boss at Stanford was a world expert on hep A and B vaccines. He told me that it is quite common for people with hep C to appear not to be immune to hep A and B BUT that although their antibody titers fall below the threshold, most are probably immune. He told me to get a booster but that it wouldn't hurt if I got the series, just unnecessary.

I haven't seen any newer research on this. I was quite stunned at how many of our hep C patients (including me) were non-reactive.

BTW, for those wondering, you can have any immunization while on any hep C treatment, including and especially interferon. That was probably the only good thing I could say about interferon - it made vaccines work more quickly.

gnatcatcher · « **Reply #12 on:** January 26, 2016, 04:45:56 pm »

Lucinda, at my January 6 appointment I brought up the HBV non-reactive issue. The hepatologist ordered a booster shot which I got that day. I'm glad to have your former boss's info -- thanks. Given that I already went through two complete 3-shot HBV vaccinations (in 2000 and 2003), I was glad the hepatologist suggested just a booster.

Lee1117 · « **Reply #13 on:** January 26, 2016, 05:09:05 pm »

That is really good to hear, my Dr is really vague and has me thinking I have one foot in the grave and the other itching to follow! I have gotten more information and education from this forum than I have received through him. Some of my results seem contradictory to some of my other results so I have been overwhelmed and confused. I was told that my portal vein was enlarged but can't find anything that states that it is. My CT says the vein is patent. You give me so much hope and I can't thank you enough for that. Congratulations on your SVR! Your numbers are inspirational! My RNA PCR qn is 952080 (12/26/15) and ALT 131 , AST 136 , ALP 137 (12/7/15) . Will just have to keep fingers crossed in 2 weeks the numbers come down. Really glad to hear you are doing so well. Stay well my friend and thanks for your support!!!

Lee1117 · « **Reply #14 on:** January 26, 2016, 05:29:39 pm »

Lucinda , thank you for the info on the vaccinations. I was a little concerned about getting it while on Harvoni . Do you have any input on what to look at with test results that might be an indication of how bad/ far along my cirrhosis is.? My CT says mild nodularity of liver but my spleen is enlarged. Does that sound like end stage cirrhosis? That's what I have been led to believe. I know you cannot give medical advice just looking to see how I can advocate for myself and stay on top of things. Thank you for any input you can share.

gnatcatcher · « **Reply #15 on:** January 26, 2016, 05:40:17 pm »

Lee,
I just Googled
patent vein meaning
and learned that "patent" means that the vein is open, and therefore blood is flowing through normally.

For any medicalese on a report that your doctor hasn't explained, Google
<term> meaning (or you can Google <term> definition)
and choose medical dictionary links and sites like the Mayo Clinic and WebMD.

I'm looking forward to hearing the results of the labs you'll take in 2 weeks.

Lee1117 · « **Reply #16 on:** January 26, 2016, 06:09:07 pm »

Natty , I did look that up but that was where the confusion came in. CT said patent but I was told prior that it was enlarged. I would think if it was enlarged it would not be patent. I can not find anything in any results that support it being enlarged. It's just so difficult getting through to the DR to question this so I will have to wait for next month's visit after I get the blood work done from the hospital Lab. I google everything on my results!

I will post results when I get them. Thanks for being in my corner... it means a lot to me!

gnatcatcher · « **Reply #17 on:** January 26, 2016, 07:51:03 pm »

Lee, my apologies for misunderstanding you. Glad you're already a Google whiz. Thanks for your good wishes. Please root for my 19.5 to drop below 12 by late June

lporterrn · « **Reply #18 on:** January 26, 2016, 09:36:45 pm »

Hi Lee,
Lynn K 's post was spot on. And although you don't quite have the entire picture of what is going on, here is one thing I'd like to share. The term "end-stage" is not a great description. When I first heard the term end-stage liver disease, it sounded like one was going to go at any minute. Now, with a bit of hepatology nursing under my belt, I am shocked by how many years (and years and years) people can live with end-stage liver disease.

So, this is what I suggest: Get your doc to quantify - what stage are you at, what are your platelets, albumin, are you in range for consideration for a liver transplant. If so, what is your MELD score? Get copies of everything (unless you can access them online) And, then ask what are the signs/symptoms that you should be worried about. For instance, vomiting blood is a 911 situation, but if you don't have varices (which they will check for if you have advanced disease), then this isn't something that is likely to happen.

Hope this helps. Lots of experience here on this forum. It never fails to amaze me the incredible lives people with cirrhosis have. It puts me to shame.

Lynn K · « **Reply #19 on:** January 26, 2016, 09:58:16 pm »

Hi again Lee

Just to add I was diagnosed with cirrhosis 8 years ago this month. I did develop varicies that I had to have banded in 2012 and have some lower leg swelling (edema) but I am fine I work full time and have a part time job and live a full life.

Cirrhosis as I understand it is called ESLD (end stage liver disease) because that is as far as liver damage is described not because the patient is at the end.

How severity of cirrhosis is staged and also how placement in the liver transplant is determined is by MELD score which uses your bilirubin, creatinine, and INR test results. The scale is 6 to 40 even a well person scores a 6. With cirrhosis for 8 years my MELD is 7.

To get on the transplant list most centers require a MELD of 15 or greater. Most patients receive a transplant around 30 depending on the transplant center so those people are very gravely ill.

Here is a MELD score calculator

http://www.hepatitisc.uw.edu/go/management-cirrhosis-related-complications/liver-transplantation-referral/calculate-meld-score

With cure of hep c we stop the progression of liver damage we may even improve with time but we won't get any worse although we will continue be at increased risk for liver cancer HCC even that risk is reduced with cure. So we will need to be at minimum checked with abdominal ultrasound and AFP blood test every six months to check for the possibility of HCC so it can be caught early.

With cure of hep c we can anticipate having a normal life span and not die from liver disease

Best to you

Lynn

Lee1117 · « **Reply #20 on:** February 23, 2016, 04:31:36 pm »

I just wanted to thank you all once again for your responses and input.
I only wish I could log in from my computer, it would make this much easier to respond and interact. By the time I finish posting my eyes will be blurry, an hour will have passed , my battery will be dead and this phone will be in serious jeopardy of being smashed!!
Gnatty, do you have to wait until June for your results for kPa or have you seen any new #'s since the last time we corresponded? I hope that you have already seen some positive news. I wish you the best and hope to see a post on that when you get them.
I have finished 28 days on Harvoni and I am happy to say so far very good results.
20 IU/ml as of yesterday down from 952,080 (12/26/15)! On my way!
Wish I could spend more time on this forum , it has really been a helpful resource in so many ways! It means so much to me but my eyes are straining and my fingers are too big for the keyboard. Best wishes to everyone. So good to see such positive results and attitudes!

gnatcatcher · « **Reply #21 on:** February 23, 2016, 05:24:37 pm »

Lee, thanks for checking in -- glad to see your very good results.

Yes, I don't get to take the FibroScan until late June. My liver enzymes and viral load will be checked on March 16 (for my regular annual physical). Thanks for thinking of me.

Are you saying your computer doesn't have internet access? If so, do you have a semi-convenient public library? In my experience, the public computers at libraries have very fast internet access.

Gnatty

Lee1117 · « **Reply #22 on:** February 29, 2016, 03:03:00 pm »

Gnatty, you are so much more patient than myself. I get extremely anxious about testing and results.
About internet access, I have it but it is shared with the homeowner. I am concerned about privacy. I fear that they may treat me like a biohazard if they were to find out. I do have a library very close to home but worry about that also. Wii is not very secure when on shared modem from what I hear. I love this forum but cannot interact.
Just reading on my phone I am all over the place. I hit links in error and so hard to see. Posting is even harder. This forum helps me through tough times but yet I can't utilize it. Such is life I guess.
I will check back after the 16th . I am pulling for you and your SVR!
Best wishes!

gnatcatcher · « **Reply #23 on:** March 01, 2016, 08:44:48 pm »

Lee, thanks for explaining the WiFi/privacy issue. And thanks for pulling for me.

It's not that I'm patient, it's that I have other medical issues. By the 4th or 5th major diagnosis, there was no point in being anxious over so many things. I made a conscious decision to spend my time actually living.

I DO get anxious in doctors' offices and hospitals, because I've been harmed several times by well-meaning doctors and residents. My "white-coat hypertension" is off the charts

Do you have any more labs before your end of treatment in mid-April? I hope things continue to go smoothly for you.

Gnatty

Lee1117 · « **Reply #24 on:** March 21, 2016, 06:16:10 pm »

A shout out to Gnatty..I hope you are having continual good news after your annual appointment with your viral load and enzymes.
I was hoping to catch something on the forum with regards to that. I never get too far with this phone issue but I do look in now and again.
As for me, good news still coming. Tonight I start my last 4 weeks of Harvoni and had appointment today....NOT DETECTED!
On my way to brighter days!
Wishing the same for all!! I hope you are rocking steady on the SVR!

gnatcatcher · « **Reply #25 on:** March 21, 2016, 07:51:41 pm »

Lee, I'm thrilled you've reached NOT DETECTED status. Your liver is probably thrilled, too

Thank you for thinking of my March 16 labs. The VL just came back today: still not detected, so I have reached SVR 24 (sustained virologic response 24 weeks after the end of treatment).

Lee1117 · « **Reply #26 on:** March 22, 2016, 01:54:25 pm »

Fantastic news for you! So glad to hear that you've hit that milestone. I am sure you will have some more great news in June with your fibroscan.
I have read some extremely hopeful post on this forum. It seems a lot of livers are getting tired of being sick and are fighting back! You've got this Gnatty!
So much great news on here, I wish I could join in and help inspire other as you have. So many good people in this forum.
Someday when I can figure out the computer privacy issue, I would love to be able to join in with encouraging words to help others like so many have helped me. Thank you with deepest gratitude to all.

Lee1117 · « **Reply #27 on:** June 26, 2016, 01:47:45 pm »

Gnatty~ I didn't know how to reach you so I am posting on this old thread. I was just wondering if you had your fibrosure results and how your kPa is doing. Cheering for you that the number came down substantially. All my best to you.

gnatcatcher · « **Reply #28 on:** June 26, 2016, 03:39:05 pm »

Lee, thank you so much for remembering and putting good vibes out there. The fibroscan is scheduled for this Wednesday, June 29. I'll let you know how it turns out.

gnatcatcher · « **Reply #29 on:** June 29, 2016, 08:03:26 pm »

My median kPa went down from 19.5 before tx to 11.4. It's not quite as dramatic a decrease as it looks, though, because I had told the technician I was rooting for a score of 12 or lower. It turns out she can choose a certain setting (I don't know what) as long as it's below a certain value, so she probably used a higher setting (which obtains lower kPa values) than what was used the other time.

Thanks to a reading below 12, the "current health issues" section of my health record now reads "Liver fibrosis" instead of "Chronic viral hepatitis C" "Cirrhosis" -- but the CNP convinced the hepatologist that I should have another FibroScan in six months just to make sure. Perhaps this is partly because the radiologist who read my latest liver ultrasound wrote "mildly heterogenous and coarsened in echogenicity" (all my earlier ultrasounds were rated "normal echogenicity and echotexture" or similar).

Lee, thanks again for your support. Aren't you due for the SVR12 VL in a few weeks? Wishing you another NOT DETECTED.

Gnatty

Lee1117 · « **Reply #30 on:** July 07, 2016, 04:58:39 pm »

Hi Gnatty, although given the results from the two separate tests seem slightly contradictory, downgrading to fibrosis is certainly a step in the right direction. God willing the next testing will confirm the findings! Stay positive and I too will be sending positive thoughts and prayers your way.
As for my last viral count as of 6/9 , I still remain not detected! I will be retested in October and also have my alt, ast and several other test that have not been done since February reevaluated. US scan shows my spleen has come down in size but my liver shows mild nodularity conducive with cirrhosis.
I only finished the Harvoni on 4/18 so I will give it time and stay positive myself.
Please keep me posted on your continuing healing and will do the same.Thank you for the update!

gnatcatcher · « **Reply #31 on:** July 09, 2016, 07:44:41 am »

Quote from: Lee1117 on July 07, 2016, 04:58:39 pm

. . . Please keep me posted on your continuing healing and will do the same. . . .

Will do. Interesting that your doctor doesn't test for SVR12 but just for SVR24 (not that it matters). Here's wishing you many healthy, happy, and productive weeks in the mean time.

Gnatty

gnatcatcher · « **Reply #32 on:** September 30, 2016, 07:55:09 pm »

Quote from: Lee1117 on July 07, 2016, 04:58:39 pm

...
As for my last viral count as of 6/9 , I still remain not detected! I will be retested in October and also have my alt, ast and several other test that have not been done since February reevaluated....

Hi,Lee--

Now that it's about to become October, I'm posting to let you know that I'm rooting for you to join the SVR24 club any day now (even if you have to wait a week or so to get the lab results). How have you been? Things are mostly positive at this end.

Every good wish,
Gnatty

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Author Topic: Do I need to be vaccinated for A and B and will it affect labs for genotype ? (Read 24884 times)