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.
I’ll 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 hadn’t 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 didn’t 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 weren’t necessarily what itched, it’s 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, “Paul, food can’t hurt you; drugs can’t hurt you.”- 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, couldn’t eat and felt so…. 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 let’s 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 – 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, let’s say at the beginning of fibrosis and/or the recommended protocol. This may not be scientific but it’s my observation.
There can be non-scientific or non ‘medical’ 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 it’s 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 so… so… 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 don’t 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 don’t 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 couldn’t 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.
Just got a notice in the mail from the insurance company saying they deny coverage for his stay at Cleveland Clinic because their “DR” does not believe it was necessary for my husband to be at Cleveland Clinic??? The Drs at Fisher Titus said they could not help him and they are the ones that said he needed to go to Cleveland? I don’t get it…