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Advice on meds

Hi
My husband has been to see his hep Dr today that has asked him if he wants to take part in a research trial .... i dont have all of the detail yet .... waiting for the husb to get back home with all the information.... what he has told me is his Dr is wanting him to stop his medication wait for his VL to raise naturally them give him something to boost immune system via injection (i am guessing he means interferon?) Anyway is this dangerous?
He has been told he will be closely monitored throughout.
Anyway my husb is e negative chronic hepatitis b with mutations. Genotype C2
Has been on tenofovir for 4 years and undetectable VL since then.
I will post more info about trail once i get it.
He had stage 3 fibrosis 4 years ago when starting on meds.... i am worried he will get really sick again if he has a huge flare once tenofovir is discontinued?
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Avatar universal
I'd definitely ask about the trial and let us know which one it is. Is this a trial to monitor how he handles stopping medication for a few months? I know there was research on this. Or is it a cure trial and in order for him to qualify, they need his levels to rise? I don't think there is any cure trial that does this but I could be wrong. Usually all they care about is whether you have been diagnosed as Hepatitis B positive within the past 6 months... but I could be wrong here as well. Personally, I would not risk this unless it was a guarantee cure but you put yourself in a bad situation with liver damage already this way.
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So basically its a research study that they have asked him to take part in ....262 hep b + patients must have been on meds 3 years plus to qualify .
So basically half will just stop completely then be monitored closley to see how immune system handles it . Other half will have interferon injections for 16 weeks ......this doesnt seem to be anything new?? .... my husb Dr has kinda made it out to be something with a high possibility of clearance....
My husband (before meds) was often very poorly, every 3 months or so he would get extremely ill .... stomach cramps , constant vomiting and sweating , this used to go on for up to 2 weeks , he was always very fatigued etc  and ended up hospitalised a few times ... this went on for years and had a huge impact on our lives etc as he was so poorly it effected his job etc finally he got the hepatitis b diagnosis and was started on meds.... since then his health has gone from strength to strength (touch wood) he is the best he has been in years and has just started a fab job doing something he loves..... i am worried stopping meds will set him back ..... ?
I've heard of this trial before. It seems risky and pointless to me. Unless your husband's hbsag numbers are so low in quantitative along with others, it makes no sense to do interferon. For being on meds for only 3 years and then stop, there can be a high chance of reactivation of the virus within him and thus the Hepatitis B infection can actually come back worse than it was. I think the last trial I saw recommended 5-7 years of being on therapy before stopping and monitoring for any reactivation. He should be looking at other trials that target cures that don't require any stoppages of medications as well until considered hbsag negative with antibodies. Interferon injections can also lead to side effects as well for some people. I know a few people have done it here for themselves, but when I asked my doctor about it he just came back to me and said "I'd rather not put you through that, the side effects can be very difficult". You definitely have every right to be worried. I'll let others comment on this though, as I am only just offering opinion. Maybe there is something the doctor sees that is steering him this way but likely it's just the doctor getting paid to do this study....
with F3 fibrosis, It is not wise to participate in such trails as explained by luckyman.
I agree .... my husband seems to want to try it though...
My husband when diagnosed kind of buried his head in the sand ... wouldnt talk about his illness with anyone wouldnt research it or anything.... he just says he will stick to his appointments with his Dr and take medication as prescribed.... He doesnt question anything the Dr tells him.....i think it is his way of coping and getting on with his life..  he said if he starts to research his illness it will consume him ..... i on the other hand have read up on his condition a lot and question everything that the Dr says .....
I just dont fully trust his specialist he is well know in the UK for speializing in Liver Disease , but when i researched him it seems it is more hcv then hbv ..... i think they are using my husband and shouldnt be getting his hopes up for a cure ....
Another quick question .... my my husband was diagnosed aged 36 he had f3 liver fibrosis with mutations.... would this suggests that he has carried the virus of decades ? From birth perhaps or early childhood or can genotype c2 make that much damage in a few years?  ...
His mum says she is negative but i am not so sure she has been properly tested?
I don't believe those numbers alone can tell you much. He'd need a full Hepatitis B panel and that will tell him if he's chronic or not, but it won't tell him for how long he was chronic for.  His mother being negative means nothing as well. Is she negative with immunity built? Dis she ever have a vaccination for it? If it was natural immunity, then it means she too had it at some time. I actually just learned last week from my father that he was immune to Hep B but he does not recall getting any vaccine for it, which means that likely he was infected at some point in his life, cleared it and now has the immunity. Unfortunately there is no way to tell, but he grew up in the 60s and 70s when a lot of this stuff was probably going around without anyone realizing it. It's funny you mentioned 36, because I believe that was the age that started mine as well when I first found out and I got very sick from it too because it was an inactive chronic infection that basically went "active" for me. Bad diet choices can also lead to F3 Liver Fibrosis. Anyway, more tests would definitely be needed here.
He has a crap diet to be honest .... doesn't drink alcohol but smokes ....he has very bad digestion , acid reflux etc...... not sure about his mams status ....  my husband is mixed race born in uk ... mom white , dad Bangladesh .... he has lots of risk factors .... covered in tattoos ... was hospitalized on holiday in SriLanka and on IV antibiotics ... participated in bare knuckle boxing when he was yunger  never done hard drugs or high risk sexual behaviour (that i know of :).. so its hard to pin point how long he has had it .... not that it matters in the slightest now .... think i will speak to him and ask him not to participate in this study i dont think its worth the risk .......
My husb said he has had problems on and off with his belly from being a teenager.... i met him when he was 28 and things got progressively worse for him in his 30s .... i think maybe his virus was inactive and reactivated then and dna started to creep up ... his VL  was 320.000 copies/ml when he got started on meds ....
His hep Dr said his illness with his stomach has nothing to do with his hepatitis as hepatitis makes no symptoms.... however, my husband had all sorts of tests done MRI scans , camera tests (up and down) ultrasounds and showed absolutely nothing  DR were baffled so after the 7th or 8th time he presented in hospital with the same thing they decided to test him for hbv maybe his Liver enzymes were abnormal and they were just going through the motions but finally they found it  and referred him to a specialist...
since being on tenofovir i can count on 1 hand how many times he has been sick over the last 4 years ....which is amazing considering  from 30 -36 he was a very poorly.... there has to be a link ...
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