Hi Sarah,
I am no expert but I see that many of your questions are opinion based. Since I deal with/dealt with these types of situations, I am going to give you the opinion of a layperson but one who has had a lot of experience with doctors and side effects and such.
First off, I am going to start with question 5. If you don’t feel comfortable with your doctor, especially with her expertise, listening skills, bedside manner, etc. find someone else if you are able. I suffered with one hepatologist for over 3 years until I finally got fed up enough to switch. So, it’s better to find one that you feel confident in right from the start, if that’s possible.
It’s not just dealing with a doctor that won’t listen to you, it could manifest into worse things later where you have side-effects and they dismiss them. I had one hepatologist that would just prescribe one med after another for side-effects and those meds had even worse side-effects that almost killed me. I would rather have a doctor with good bedside manner, that will listen to me, believe me and advocate for what is best for me but also acknowledge my life needs and treat me as a human and not a number than one that touts himself as high and mighty and knows it all but won’t listen or help with what’s important to YOU.
When it comes to 4, Almost all the doctors I have ever had, say that there are no side-effects or very minor side-effects. Then, when you look that drug up online, you find a whole novel about all the side-effects. I know this is a controversial thing to say but after starting Vemlidy 5 years ago, I had a list of bad reactions. Very serious bad reactions. Reactions that I never had issues with prior to starting Vemlidy. The doctors will mostly answer with, “Correlation isn’t causation.” So I suffered through brain damage so bad that I had to relearn vocabulary, fatigue and feeling so ill that I was bedridden for months, my entire G.I. tract was fried when prior I had an iron stomach, itching and red dots all over my body, and pain… so much pain. Doctors do not want to acknowledge these reactions as side-effects of the treatment even though I have had newer hepatologists that will acknowledge it as “my body having bad reactions to the treatment”, they will not call them side-effects of the treatment. I am not trying to scare you away from taking treatment. It is critical that you do take treatment and probably a large majority of patients have little to no side-effects from any of the 3 treatments. I just want to emphasize that I wish I had a better hepatologist when I first started treatment. I wish I had someone that would truly listen to me and not dismiss all the suffering I went through with another medication and another and another when each new medication would cause even more problems to the point that often times, I thought I was dying or going to die soon.
I’ll let @joan_block answer 1-3 for you as she has posted about these topics many times or anyone else for that matter.
Sorry, if I went in the wrong direction with my reply. My main point is that you advocate for yourself. If you don’t feel confident and comfortable with one doctor then you should probably listen to yourself and find another one as soon as possible. I have a G.P. that I would hope to never lose. She is not an expert in specialties and there are times that she will tell me she doesn’t have the answer. But I know she cares about me as a human being and she listens to me with respect and concern and I TRUST her. I wish I could get that same cohesion with all of my specialists.
I wish you the best Sarah, advocate for yourself, I am sure that any 3 of the treatments would be fine, although, personally I know that as a patient, that I feel a little more confident being on Vemlidy so as not to incur the potential issues with osteopenia/osteoporosis and kidney dysfunction. Hopefully Joan has good news for you to be able to get Vemlidy at a low expense. She has written other posts about it and I believe there is a website or something where you can apply for discount. Also, I don’t know if it’s your current doctor or if it’s truly your insurance provider, but Vemlidy usually isn’t on most accepted medication lists for most insurance companies. Your doctor has to do a pre-authorization evaluation to get the medication accepted. I am not saying this is the case in EVERY situation but I think for most. My insurance doesn’t originally cover Vemlidy. Every year, my hepatologist has to submit a pre-authorization in order for Vemlidy to be covered by insurance.
Hope any of this helps and again I am not trying to scare or even shy you away from treatment. Quite the opposite, I am proponent of starting treatment as soon as is indicated by your physician. I waited too long, until I already had cirrhosis and maybe that had an effect or part to play in how much damage was caused after starting treatment. Any 3 antivirals will most probably do the job and it is necessary that you do so if your doctor has so deemed. The reason I shared how much I suffered, is that I should have listened to my gut and tried to find someone better before starting the treatment, but hindsight is 20-20.
Sincerely,
Paul