Hi, Im a new member. My husband was very recently diagnosed with HepB. I tested negative and we are on a very bumpy road here in Ohio. None of the Dr.s seem to have any answers and we are so frustrated with things. I found the HepB Foundation website and started reading all the information I could to try and understand. I am grateful that I was also directed here to be able to read and ask questions because I have so many.
Currently my husband is in ER and they are less than helpful. I pray we catch a break soon.
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Dear @SamanthaMech,
Thank you for sharing your story and I see that @availlant has answered many of your questions in the other thread. Weāre all wishing a quick recovery for your husband and keeping you in our thoughts.
Please reach out further if you need support.
Cheers,
Thomas
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Late last night, a bed opened up at the Cleveland Clinic and he was transported there. It has been a horrid ordeal up to this point with no Drs here taking care of him. No one around here seems to know much if anything about HepB, let alone how to treat it. 
The Dr at Cleveland was surprised that our Drs let this go one for so long with my husbands declining health. They are putting him on an antiviral today. The main concern now is getting his Bili level down, treating the HepB, and assessing the damage caused to his liver from lack of real care.
I am finally a bit hopeful that he will be ok and recover over time. This has been such a roller coaster of emotions and at one point my husband was giving up. They had convinced him basically he was going to die! I am so thankful for the HepB Foundation website and for this group and the information I have been able to find. It truly was a blessing and so needed to make my husband realize there was still HOPE!
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Dear SamanthaMech,
Thankfully the doctors at the Cleveland Clinic are better versed in the management of acute HBV infection. Can you tell us which antiviral?
Also, they should test his serum HBV DNA right away (this will give a baseline quantitative measurement of the level of viral replication expressed in the units IU/mL). This important as they need to assess his HBV DNA again in 4 weeks to confirm his response to antiviral therapy (either ETV or preferably TDF or TAF) by seeing a decline in his HBV DNA.
The emotional stress your husband has been put under is really inexcusable. None of this would have happened if the original attending physician(s) were properly versed in the management of acute HBV infection.
The good news is that his viremia should respond to treatment rapidly (typically full suppression within 3-4 months) and during this process, his liver function should progressively (but a bit more slowly) recover.
I am very happy for this outcome. I am sure it has been a very difficult past few weeks for you and your husband. Be hopeful!
Best regards,
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Last night they ran a BUNCH of blood work. Today the did a CT and ultrasound and more blood work. So far they have not started any anti-virals? They also have not given him anything besides Tylonal for pain. Since they havenāt finished compiling all of his tests, they have not come in to give us a summery and explain where we are at or why they arenāt starting any medications? I am a bit confused and my husband is definitely frustrated and tired.
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HI SamanthaMech,
This is a good sign: they are trying to get a handle what else (if anything) is contributing to your husbands liver decompensation. Until they are sure they have to be careful with the use of stronger pain relief other than Tylenol.
Unfortunately, they are probably feeling the need to get his status re-evaluated given his previous management. This means lots of tests. Given the presence of his jaundice, and his positive HBcAg IgM result and the fact this his presentation is classic textbook of fulminant hepatitis due to acute HBV infection, the HBV DNA test should be expedited as it is urgent. The CT and ultrasound are to rule out other potential causes of his liver decompensation (this is important to rule out). This is best done with fresh scans.
Hopefully they will come to you today or tomorrow with some answers. Tell your husband to hang in there!
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They finished all of his tests and started him on TDF yesterday. They sent him home with me. His Bili level is still very high (10.2) and he has to have weekly blood work. his latest test showed these numbers:
HBsAG - Reactive
HepB Surface Ab - Neg
HepB Core Ab - Positive
HepB Core Ab Img - Positive
Hep B Surface Ab Quant - <8.00
HepB Viral DNA Ultra - 870,000IU/ml (detected by PCR)
HBV DNA Ultra - 5.94 IU/ml
They said he has a long road. He will be jaundice for months and probably on antivirals for atleast 6 months. He still isnāt considered chronic. I have to watch him for other signs and symptoms that he is crashing into liver failure. If that happens they are talking possible transplant (but we arenāt there yet they say). He is also scheduled for an MRI soon because they say 2 small ālesionsā on his liver but were unable to tell of what nature they were. They want to rule out tumors with the MRI.
But for now, he is home. He is very weak and has very little appetite.
Dear SamanthaMech,
This is great news regarding the TDF and no surprises regarding his virology (esp the HBV DNA). Also correct to get him home to his usual surroundings. Compliance with the daily TDF regimen is important.
Its also important that your husband rests (even as his energy slowly returns) as his liver will be doing its job healing and regenerating itself. The most important part (halting the spread of infection in his liver) will begin now that he is on TDF.
It is normal for serum bilrubin to take a while to decline (and the jaundice to disappear) so be patient. How old is your husband? Its unlikely these lesions are hepatocellular carcinoma (one of the long term effects of chronic HBV infection) as his HBV infection was only very recently acquired. They may just be benign cysts (which occur in 5% of people whether infected or not) but its important to be sure that they do not change in size.
Hydration (think pedialyte or preferably his favorite flavor of gatorade diluted 1:1 with water) is important. Also clear soups and broths while his appetite recovers.
You have both been through quite an ordeal. Best of luck to you both.
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Thank you so much. I appreciate you and you taking the time to explain things for me.
I am still hopeful my husband will have a full recovery over time. He is only 52 and this has been a lot for him to take in.
Again, thank you!
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Hi @SamanthaMech,
Great to hear that your husband eventually got the help that he needed and is back home to recover. What a stressful ordeal!
Iāve put your story in a separate thread so that itās easier to find for anyone going through the same thing.
Thanks again for sharing your story and hope the community can help you through any further issues.
Cheers,
Thomas
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The TDF is making him very nauseous. Or atleast I think it is the TDFā¦ If he tries to eat a little, he gets sick and vomits. Is there anything he can take to calm his stomach some? Is it safe for him to use pepto bismol? He managed to eat some yogurt last night that stayed down. He needs to eat to give his body the strength to fight this thing?
Also, he is itching all over? Is that the jaundice or the TDF? I bought some cortizone spray for poison ivy and we have been spraying it on some of the areas he is itching the worst? Has anyone else had this issue or can recommend something to maybe give him a little relief? He doesnāt have hives or a rash, just itches?
thank you. This has been a very stressful time and I thank the community and Availlant for their help and well wishes during this time. <3
Hi @SamanthaMech,
I have had some instances where I take my TDF early in the morning on an empty stomach and it doesnāt really agree with me. I found it better for me to take it with or after meals. Perhaps you can try putting it in the yoghurt?
Not sure if pepto bismol is OK to mix with TDF; it is worth checking with your pharmacist (@hope4us any input here?). Here is some information about other antacids: Lifestyle changes, nutrition, and supplements for hep b - #74 by hope4us
I think @PuallyHBV has some first-hand experience with liver disease-related itching, he may have some tips about what works for him. In my reading, it seems like scientists donāt know exactly what causes it (and it may be different in different people). Indeed, it is common in cases where bilirubin is high. If it is caused by the liver disease itself in this case, then he should improve as the antivirals work to reduce the liver damage. If it continues as the liver disease gets better, it might be worth considering a switch to another antiviral (e.g. entecavir, ETV).
Hope this helps,
TT
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His first blood draw since coming home is scheduled for next Tuesday. I know it is too soon to probably see good changes, but I am still hopeful.
He did finally manage to eat some real food yesterday and keep it down. I am going to speak with the pharmacy and his Dr about pepto bismol or some kind of antacid to help his stomach upset. He did start eating a yogurt in the morning before taking his med today. I am hoping that will help some.
The itching DEFINITELY seems to be worse in the evenings. The cortizone spray is helping some. I am going to also buy him a lotion today to use after a shower.
Again, I thank you all for you input and support during all of this. It is great to have people who know something because they have already been through it! I have had so many wrong Dr.s during this process and misinformation, true help and support has been a blessing!
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The itching is definitely a result of his jaundice (a common complication with elevated serum bilirubin).
Ask his doctor about Cholestyramine, a medication which is used to treat itchiness from jaundice.
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Hi @SamanthaMech ,
As Thomas mentioned, I did have major issues with itching for about a year and then would get it off and on for years. I will explain the situation that I experienced as it was different than what your husband is going through.
First however, I wanted to tell you that I have been on the edge of my seat while following your posts. @availlant has done such a good job of guiding you through this tough situation and informing you so that you have the knowledge and scientific confidence to fight for your husband and get him the proper care that he needs. Whenever I see his username, I think of it as @avaliant.
Iāll try not to get into too long a story. I was born with Hep B and finally started seeing a hepatologist around 17 years ago but I never did treatment even when I had latter stages of fibrosis. In 2017 I was diagnosed with cirrhosis. My new hepatologist at that time was so shocked that I hadnāt been on treatment since my HBV DNA was in the 3-4 millions and all my numbers were so bad (or bad enough) that he didnāt even think that treatment would work and had me go through the whole MELD score process and I had to do all this crazy testing for the MELD score. Once I started treatment (TAF) however, my HBV DNA started trending downward and so did my other numbers. The treatment was doing its job but the problem was that I had so many major side-effects from the treatment such as brain damage, loss of vocabulary, unexplainable weight loss (I lost around 35 pounds in less than 6 months), extreme abdominal pain, loss of appetite and the list goes on and on. One of the side-effects was extreme whole body itching and I would also get all these red spots all over my body. My hepatologist at the time told me that the itching was due to the liver not being able to rid the body of all the toxins and so it was coming out of my skin and causing the spots and the itching. The spots themselves werenāt necessarily what itched, itās just that both happened at the same time.
One other similarity is that I had issues with my hepatologist at the time; not only with bedside manner but that he had a large ego and would tell me statements that made NO sense like, āPaul, food canāt hurt you; drugs canāt hurt you.ā- He was speaking about medications. He would just prescribe me pain medications that would just make me sicker and sicker and I was bedridden for days and weeks sometime over a span of a year or so. I seriously felt multiple times that I was going to die. I was so lethargic and weak, couldnāt eat and felt soā¦. SICK, like I had the worst permanent flu ever.
The bottom line is that I had to suffer through all the side-effects and also the itching. Nothing was ever done about it. Eventually, the intensity subsided as my lab numbers got better and better over time and at some point it stopped being a permanent thing. I still get it once and awhile, but not near as intense as it used to be. It probably has to do with having too many medications and my liver not being able to process it all sometimes.
A couple of years ago I was able to switch hepatologists and have one now that listens to me and shows care and concern and letās ME be a part of my own medical trajectory.
My hypothesis on all the side-effects that are not even approached as side-effects of treatment- because it is so rare for patients to have many side-effects from any of the 3 treatments (ETV, TDF and TAF ā I have been on them ALL), is that when patients are at a critical stage of their liver disease, such as cirrhosis or labs that are so heightened that treatment at increased stages cause more side-effects than if you start treatment, letās say at the beginning of fibrosis and/or the recommended protocol. This may not be scientific but itās my observation.
There can be non-scientific or non āmedicalā issues that are still REAL to all those that suffer them. For example, Most medical professionals will state that the liver does not have many pain receptors and that when we will feel pain around the liver and that section of the ribs, it must be something else causing it. The phenomena that I have noticed within this community is that not just a couple, but MANY people feel this pain, so itās not arbitrary or in our minds. What is it that so many of us have this type of pain at some point or other, that associates us together in that regard? Just like this, I believe there are a lot more people suffering from treatment than the pharmaceutical companies have a grasp on. How many other people have the same or some of the side-effects that I did and no one knows about it to do anything so that they are considered side-effects? No one has done anything official about what I went through so that it could be added as a statistic and qualified. I am sure it is still rare but much less rare than what is claimed.
I guess the reason I am going into the issue of healthcare and pharmaceutical quality of service is because it seems like we are not supposed to speak on it or complain or have issue and we are supposed to suffer quietly and not make a fuss. This is why I am so encouraged that Thomas has created a thread here: What do patients wish clinicians would know? where we can post issues and ideas about healthcare. In no way am I trying to demean the medical community but there are issues and there are serious things that patients (and their families) go through that are gut-wrenching and horrible experiences that no one should have to suffer through. On the flipside, there are wonderful doctors that are humble and listen and care. I have a pretty good team of doctors now but it took work to get there and a lot of self-advocating; which is very difficult for someone to do for themselves when they are sick and suffering and bedridden, in pain and soā¦ soā¦ tired. Some day when you get a chance, maybe you could post on that thread, the experience that you have gone through and what you see as the issues and what you think could alleviate those issues. I will be posting to that thread but I have SO much to say that it will take me a LONG time to create it and post it. Maybe I should just do it in little stages.
Sorry for the novel, I tend to be overly verbose. I was riveted by your story though and I will still be waiting for your updates as you get and post them. I wish the best for your husband and even though we donāt have the same diagnoses, we have both suffered a lot from this disease. Not only do I hope your husband recovers from his current state but I hope that it is only acute and not chronic. What a champ you are to advocate for him and do so much of the heavy lifting. Your husband is blessed to have you.
Sincerely,
-Paul
P.S. Oh yah, I almost forgot. Again not being any type of expert in the field (and hoping that @healthexperts can elaborate on this, but I donāt think Pepto Bismol (in regular dosages) is harmful to the liver. I have read multiple sites that pretty much show the same thing as this site: Pepto-Bismol: What You Want to Know and I couldnāt find anything about interactions with liver disease or with liver medications. There is a list of known medications that Pepto Bismol does have potential interactions with on that site.
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I spoke with his local regular Dr about the itching and he prescribed Hydroxyzine HCL 25mg. He ran it against his antiviral and his medications for COPD and said it is safe for him to take for the itching. THANKFULLY, it seems to work. My husbands itching is at its worst during the evenings. He is also using the cortisone spray on a few areas topically that really bother him a lot like his hands and tops of his feet.
Thank you for your concerns and your help. Feel free to write a ānovelā any time because the more information out there, the better we all are for it!
The past month and a half have been a horrific journey for sure! I agree there are A LOT of Drs that just really donāt want to hear anything a patient has to say regarding their treatment because they arenāt the Dr and they just donāt knowā¦even though it is the patient that is actually experiencing it all every day. My husbandās regular Dr really did try. He admitted he was not familiar with HepB but he would find people who wereā¦sadly no one around here truly is.
The gastrologist we saw could have cared less and truly had a lot of misinformation about HepB. When we tried to tell him symptoms my husband felt he definitely thought it was ānon relatedā. When I found the HepB Foundation and began reading there, I discovered a lot of information that the Dr left out! Then I found this community and my world opened up! I took information I learned here and began my search for some one to listen and treat my husband. Unfortunately, he got much worse in my search for a real Dr.
The first hospital was a sad joke. They treated the pain, but did NOTHING else to help my husband. His health quickly declined even more and he was giving up. And after 3 days of morphine every 3-4 hours, I think they got him mildly addicted to the morphine which caused other issuesā¦ The Drs at this hospital terrified my husband with talks of transplants and death and still no talk of treatment! It was crazy. My husband being transferred was an absolute blessing!
Cleveland Clinic had people who actually knew the liver and had previously treated HepB. Sadly no previous Dr or hospital sent any information so they spent the first 24 hours running tests to try to figure out all of the things the other Drs and hospitals skipped. During this process, my husband (I think) was going through a form of morphine withdraw and was angry and impatient.
I posted here often and @availlant always respondedā¦it was amazing. I felt hopeless and he gave me hope and strength to keep working for my husbandās health. I read and read articles here, gathering more and more information for my husband to try and give him āhopeā to continue fighting. He truly wanted to give up at one point? If this is how others with Hep have been treated and what others have gone through, I can ABSOLUTELY understand how they feel and I cannot fathom them going through it aloneā¦
My husband is still experiencing the nausea, but we are seeing a pattern to it to some degree. He has been eating a bit of yogurt in the morning before he takes his antiviral and he waits to finish eating anything for at least a half hour or more. All meals are small portions spread out now and thankfully he isnāt vomiting as much! The Hydroxyzine HCL25mg is definitely helping with the itching as is the cortisone spray. We found the cortisone lotion really did nothing for him and actually seemed to make him itch more?
I will definitely be posting his first blood work results on Tuesday and his MRI results once we are able to get that scheduled. @PuallyHBV I truly thank you for your story and I pray you stay itch free and healthy. You story sounds very similar to my husbandās in the poor care you received in the beginning. I am so glad you found a caring team of Drs. That is definitely key in this journey.
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My husband has only been taking TDF for less than a week now. The nausea is still there, but less vomiting. He was prescribed a medication for the intense itching caused by the jaundice. The Dr cleared him to use Pepto for his stomach when needed.
I have been reading a thread on here about possible side effects because it mentioned ābrain fogā. Yesterday was the first time my husband mentioned it. He said he just couldnāt remember anything from the day? I was warned by the Drs to watch out for confusion and such, but this didnāt seem like what they mentioned to me because he was completely able to articulate what he meant? Could this brain fog just be a temp side effect because he is new to the antiviral and his levels are so high and he is jaundice?
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HI SamanthaMech,
I am encouraged by his being able to eat (is he getting up to go to the bathroom)? See if he can sit in a comfortable chair with a TV table to eat his meals (even if only for a small time). Regular mobility (as he can manage it) is important. If he feels up to it (and the weather is not too bad) a few minutes outside in a chair to get some fresh air is something you can consider.
Neurological complications with TDF are quite rare - your husbandās apparent confusion is most likely a delayed complication of his jaundice. This will ease with time.
In order to set your expectations, as your husbands liver slowly heals, the bilirubin will decline but only slowly. Donāt be upset if the next blood test does not show a big decline.
Hang in there the both of you.
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