I live in France. End of 2004 (I was 37) I discovered that I had chronic hepatitis B when my doctor saw a suspect ALT flare and asked for an additional blood test.
These are the results I had in January 2005:
Transaminases: AST: 95 UI/l, ALT: 216 UI/l
HBsAg +, HBcAb +, HBsAb -, HBeAg +, HBeAb -
ADN VHB: > 35000000 IU/mL
Liver biopsy result: A1F1
In February 2005 I started taking Hepsera.
Transaminases lowered to normal values in July 2005. HBV DNA values also lowered.
Phosphorus went down due to Hepsera.
In December 2005 the HBV DNA started to raise again showing that Hepsera was no more useful. My doctor added Lamivudine (Zeffix) on top of Hepsera.
In June 2008 the HBV DNA became undetectable. My doctor decided to move to Entecavir (Baraclude) 1mg.
In September 2009 I had HBe seroconversion: HBeAb +, HBeAg -
In September 2011 HBsAg was 4087 UI/mL. HBV DNA was always undetectable.
In September 2012 my doctor convinced me to add interferon (Pegasys) on top of Entecavir (even if I was really afraid by the possible side effects). After three months (Week 12) of entecavir + interferon combo the HBsAg was around 700 UI/mL (I don't have here the precise figure). After six monts (Week 24) HBsAg was 39 UI/mL.
My next blood test will be end of May.
I have some side effects due to interferon and sometimes I feel very tired. Neutrophils are very low (once they went down to 600/mm3). But the results I had until now convinced me to continue my weekly injections (even if I don't like at all to do injections all alone).
In 2004 (when I discovered my illness) the doctor told me that, in his opinion, the infection had happened 5 years before.
I don't know my genotype. I've checked on the web and I saw that this information is important because (according to Wikipedia) different genotypes may respond to treatment in different way. I should ask my doctor. But I remember that a few years ago he told me that my virus was common in the mediterranean area, so maybe (always according to Wikipedia) it is type D. But I should check with him.
I did not experience depression. I don't know if it is because of my normal nature (I tend to be always optimistic) or because I have good friends (who are not aware of my illness but I prefer this way) or because I live in an amazing town or just because I'm lucky.
But I had to go through some difficult moments, in particular at the beginning of my treatment. I always walked a lot but at that time I was unable to walk more than 15 minutes. And also I have sometimes some moments when I have a strange feeling in my head (I feel confused and dizzy). And my skin is very dry (this is another known side of interferon).
But I'm mainly concerned by neutrophils now: they are low (around 0,8 last month) and each time that I have a little bit of fever I start to worry.
it is so good to see that you confirmed the combo trials and i see you had high hbsag baseline at 4000iu/ml when you started.so it is not important the hbsag quantity at 1000iu/ml or less but the number of years under antiviral therapy
you are of course a 100% responder and sure to clear hbv, as to neutrophils i just checked hcv community where they use intf combo as the only available therapy and have much worst sides than hbv.in case of low netrophils or low plts there are drugs to use before lowering pegintf dose and the values are neutrophils constantly lower than 500 and plts less than 20-25
To grmr: during the last three months I had similar values as yours for neutrophils (0.6 / 0.8) but I'm on 180mg pegintf. According to my doctor there is no reason to worry, as long as neutrophils are > 0.5 I will not lower the pegintf dose.
Stef, thanks for your advice on Neupogen. A good point is that I often do blood tests because I'm in a trial so I'm sure that if something is going wrong my doctor will have the possibility to react fast. By the way that was the main reason why I accepted to go for pegintf: being in a trial I can take profit of a complete follow-up (blood tests, checking-up with doctors, etc) so that I feel really confident.
As you could see in my first post, I have been on antivirals for more than 8 years now. Is this the reason why I'm a good responder? Or is it because I've already had a HBe seroconversion?
there is no answer yet, the data from trials which are public show:
50% hbsag clearance by 48weeks, people on antivirals from long time 5-7years low hbsag baseline less than 2000iu/ml
90% response with very low hbsag by 48-72weeks les than 300iu/ml with most patients with 10-30iu/ml.in this group there were one patient with very high hbsag at almost 7500-8000iu/ml
10% non response on a patient using lam+adv for about 5 years
my guess from this data (that confirms your results too), is:
potent antivirals like tenofovir and entecavir can make response despite only 3 years of hbvdna suppression and high hbsag.the patient with very high hbsag was on entecavir 3 years only
low potency antivirals need many years for response and might not respond
the hbsag level may have little importance, potent antivirals rescue immune response by lowering t-regs and other effects, so that pegintf add on works anyway
i want to try imiquimod again with a daily suppository schedule of 12,5mg which i tried only 2 times for 7 days because of the high cost.if i see an immediate hbsag drop as it happened before i ll try to jump in the intf trial too or will see with my doctors if the combo can be used out of the trials too
so to clear the trial results (which was in france too):
of the 90% responders:
50% cleared in 48weeks
40% reached low hbsag which will probably clear by following combo over 72weeks.the hbsag here is so low that even off pegintf they ll slowly clear with time, even off both peg and antiviral
10% no response, this patient should switch to tenofovir and then retry pegintf add on in a year or two so we may see confirmed if non response was due to low potency antivirals.
this patient has also low hbsag less than 1500-1800iu/ml so the low hbsag may not be the key for the combo response but the potency of antivirals and enough time to rescue immune response on these potent drugs
Thanks Stef. Your explanations are very clear.
In my case, I'm supposed to go for a 48-weeks combo entecavir + pegintf (currently I'm in Week 35). My doctor said that I will stop entecavir only if I have a full hbsag clearance. Even with small hbsag values he thinks that it will be necessary to continue taking entecavir. He also said that usually pegintf will still be working even after W48 (after the end of the injections).
My doctor has a different opinion, he thinks TDF for 1,5 years and then stop. If relapse happens that recontinue medication. I asked about the possibility of resistance if I discontinue and he said it's very low (the chance of happening).
Can you tell this to your doctor and tell me what your doctor said to me? My doctor is in Malaysia btw.
see the experience of otan and other in the forums and comments by studyforhope researcher, lowering hbsag to very low or undetectable does not mean clearance of infection because cccdna will stay in the liver cells anyway, we can only achieve full control of the infection by a high titer of hbsab which will block reinfection by the remaining cccdna which will be totally cleared by decades of full immunity
this is to say do not be tricked by less updated liver specialists, pegintf must be stopped when hbsab develops and not earlier.pegintf course is now known to be best at 96weeks since years but helathcare and insurances push to the 48weeks anyway........
so if you can by any means do not stop pegintf until hbsab develops, if the antibodies are not formed when hbsab is und t-cell response can be rescued by zadaxin and repeated hbv vaccines.
the best hbv vaccine is available in israel pharmacies but zadaxin+hbv vaccine sold in europe should be enough
once hbsab is high you must keep monitoring the levels in case it falls und again and hbsag develops back, 6-12months of entecavir even after hbsab is developped is a good choice, this is what research centers do
tdf can t clear hbv, in 1.5years it wount have any effect
the minimum time to clear hbsag on tenofovir has just been reported by a study and is 17years, entecavir 35years.......your doctor is very stupid and you d better change it right away and apply the combo sequential therapy as the studies are indicating for hbv cure
I've already had this discussion with my doctor. He said that it is too risky to stop the entecavir before a complete clearance. A virus mutation is always possible. I also remember that when I started taking antivirals eight years ago (it was adefovir at that time) he told me that it was a lifelong treatment.
Stop TDF after a period of undetectable hbvdna then wait for a ALT flare to clear the virus is the subject of an on-going clinical trial. The trial was prompted by the observation that some patients who stopped TDF after a consolidation period of undetectable hbvdna sometimes experienced a flare, but then cleared the virus. I am not sure about about "1,5" year, most likely it should be "1 to 5" years. You can ask your doctor whether he/she is following this clinical trial.
i dont think that dr even knows about this study, 1.5years is not enough at all to make any change to both immune system or hbv in the liver, to ave such response longer periods are needed and also fibrosis checked
This the agony that we South East Asians have. Things are even worse in my country where most doctors are still recommending Lamivudine "to start things off and get the next medication ready for resistance development".
It's not even about the money anymore (how doctors are just selling drugs), it's just downright stupid and we're paying for it. And I'm having a hard time finding doctors who use the combo treatments. Even harder to find doctors who use add-on treatments.
During all these years with antivirals I had ALT level around 20 - 25. Never more than this. ALT did not change with interferon. My doctor was expecting a ALT flare demonstrating the effectiveness of interferon but I always stayed around 20 - 25.
Did you have any issues with Blood pressures while on Entecavir? Been on Tenofovir for 3 years now and experiencing a rise in blood pressure. Managing or lowering this hasnt been easy. I hear its due to the fact that as the kidneys try to eliminate the TNF, over time the blood vessles in the kidneys begin to constrict, leading to increases in blood pressures.
I am considering making a switch to Entecavir. What do you all think?
No, my blood pressure is normal. I did not know that such a risk existed, this is an additional reason to continue the entecavir + pegintf combo hoping that I'll be able to stop both after the 48 weeks.
My doctor asked for a blood test with hbsag quantification at the beginning of the trial (September 2012) but I don't have the results here at home, the doctor kept them. I remember he said that hbsag was around 3500 but I need to confirm, I'll ask him next time I'll see him.
Guys those developing high blood pressure on nucs drink more water first. And start drinking Habiscus tea and beat root juice with L - Arginine. I took my blood pressure down slowly to a more reasonable levels. 135/85 seems to be ok to me. But it is not 160/100 .
This is actually another proof why we dont needs these nucs. They are too toxic and high blood pressure is the result from toxicity. And the fact that nucs damage kidneys too.
But we need to constantly detox when on these drugs. Stay on a diet. Increase vitamin and mineral intake. Like Stef here said.
But on blood pressure habiscus tea works.
But I too would like more info on how to reverse blood pressure to normal and understand the mechanism of how NUCs raise blood pressure.
Thanks veteranB. The high blood pressure issue is a great source of concern for me at the moment. I am drinking onion juice twice daily. Was told this would lower it. But it reduces blood sugar too and makes me feel tired. Wish I can find a place to purchase hibiscus tea. Would love to try it out too.
Stef any ideas on best way to maintain blood pressures while on there NUCS
And i completely agree. Those NUCS increase the risk of kidney toxicity over years of usage leading to hypertension. There needs to be a way of combating these effects on kidneys.
Many thanks VeteranB, have been able to locate Habiscus tea and beat root juice with L - Arginine which i have started taking immediately. Looking forward to great results
Also see thread on "Transitioning from Viread (Tenofovir) to Baraclude (Entecavir)", where an individual posted about issue of kidney tox due to tenofovir, and that they would be switching to entecavir
i think you are exaggerating the issue by saying Nucs damage kidneys, no patient hbv infected with normal kidneys has ever experienced a reduction on kidney function over 6 years use of tenofovir on the contrary patients achieved an improvment and even in the case of combo tenofovir plus telbivudine because kidneys are damaged by hbv infection.
so those with healthy kidneys can have only benefit from blocking hbv to damage kidneys while those with damaged kidneys can have worsening of kidneys function.
on the contrary those with damaged kidneys baseline will have problems on tenofovir and possibly with other nucs too.supplements like fibroguard,coq10, vit d3 and use of backing soda might help
i had the issue myself when using entecavir plus alinia and fibroguard use made creatinine normal and less than baseline values by 13 days.the use of fibroguard then allowed me to use the combo tenofovir plus entecavir without any issue.
Hello Stef. Thanks for your continued help on this forum. You give us so much hope and a fighting chance.
I have had those advised tests done, and here are the results.
* Lactate- Normal 0.77 (reference range: 0.5-2.2 mmol/L
* Vitamin D: 39.1 ng/ml
* pottassium: 4.4 (reference 3.5-5.1 mmol/l (My pottassium level has gone down to perfectly normal)
* Uric acid: 0.39 (Reference range: 0.24-0.52 mmol/l)
* Phosphate: 1.27 (0.80-1.40 mmol/l)
* Ph- 6 (My Ph is looking good, target to get to 7 as you advised)
* My only concern now is my creatine/albumin ratio: 5.1 (Upper limt of normal is 2.5)
* Creatine clearance (lab didnt give number but said it was reading high values too. hence, they sggested it might be a lab error, and asked me to come in again for a retest).I do a lot of exercise 9Swimming) and during the period of the creatine tests i was on a detox program and wasnt exactly well hydrated.. do you think this could have affected the results?
I have immediately started taking Baking soda and the full heptech protocol. My blood pressure has come down as i started taking: magnesium, coq10, hybiscus tea and l-arginine. And the levels have remained very moderate. i also think this might be a good time to switch from tenofovir to baraclude. What do you think stef? How can i stop any further kidney issues? Please advise stef. Give me hope.
One week of combination is enough to switch from Tdf to etv.
If this is wise is another question.
Your lab values report ist confusing.
Did you report serum creatinine?
The micoalbumin test is very important. It measures urine albumin and divides it by urine creatinine. It is also called albumin to creatinine ratio.
If your creatinine clearance values were high, then this is very good, it means no loss of kidney function. Obtain the actual values and repeat if requested.
Assessing kidney function accurately is very difficult.
The cystatin C in serum is a better test than serum creatinine.
Ideally the glomerular filtration rate is measured. The creatinine clearance tries to estimate the gfr, but its accuracy is limited. The best test is the inulin clearance, but only a few places perform this test.
To simply blame high bp on kidney damage and the go on to blame tenofovir for that is not wise. No one knows for sure, but long term Entecavir seems to hold more fundamental problems than tenofovir, since it is not an obligate chain terminator.
Many thanks. Glad that high reading creatin Clearance reading is actually good. Will go back and redo the test. Will redo he creatine clearance again, at another lab.
For the creatine/albumine ratio, i actually just remembered i had seperate tests for creatine and albumine about a month ago at my company clinic. I always thought the creatine/albumine ratio test required a special kind of test. Didnt realise it was just a simple ratio of the creatine reading to the Albumine. Here are the separate results:
* Creatine: 72 (Normal range 9-124 uMol/L)
* Albumine: 41 (Normal range: 38-50 Gm/L)
* Doing the simple ratio to get the creatine/albumine ratio myself gives: 1.75 (Normal Range: 0-2.5)
What do you think?
HbsAg went down to 2.25 iu/ml (it was 39 at week 24)
HbsAb negative but next to the threshold: 6 miu/ml (was 0 before).
Good news indeed. According to the schedule of the trial I will have to stop intf in August (week 48).
A few weeks ago my doctor said that entecavir will be stopped only in case of a hbsag clearance (and six months after that).
Phosphore is low: 0.50 mmol/l (it should be at least 0.80): is it because of entecavir?
Neutrophils and platelets are still low but they have slightly increased since week 24.
With the exception of neutrophils and platelets, I still don't have any other issue with intf.
very very good news, most of pegintf add on users are getting cleared of hbsag
do not stop etv until hbsab is high even if you have to pay yourself, it is also advisable not to stop pegintf until hbsab is good levels, see otan posts about it and hbv vaccines/zadaxin to keep good hbsab levels
remember hbsag und and hbsab>10miu/ml means no hbv clearance but hbv immune control, so it is best to keep an eye on hbsab even after hbsag und and keep etv 6-12 months even after that, this is the schedule of the research center i am followed when hbsag is cleared
Ciao Stef, thanks for your comment. In fact it is maybe unclear for me the difference between hbv clearance and hbv immune control. I'll try to look for more information on this.
I saw your recent post with the hbsag rapid decline. Also in my case hbsag was going down (but not as fast as you) before starting peg (HBsAg was 4087 iu/ml in September 2011 and it was around 3500 iu/ml in September 2012 when I started peg). Maybe this is an interesting indication of the effectiveness of peg add-on.
Having seen the results I had, I strongly encourage you to go for pegintf. I remember I hesitated many months before saying yes to my doctor proposing the trial to me (and I was very lucky: I have been the last one to enter the trial. One more month of hesitation and I was out).
In bocca al lupo!
that's the way to go.. it seems you are reaching the top target.. clearing hbs and developping hbs anti bodies.. i hope the same will eb for me as i'm planning to have eTV for some years and then ifn add on (AGAIN :) )..
I hope all the best for you.
My biggest concern until now was that I had to take entecavir each day for so many years without knowing if I will have to suffer of serious issues in the future (we don't have enough visibility on the negative effects of these drugs on our body). On the other side today we know that this is the most effective way to fight the virus.
For information: in my hospital we were sixteen people participating to the trail (eight people taking etv + peg and eight people taking etv only). Two people (among the ones taking etv + peg) have started developing hbs anti bodies before week 48, but I don't have any information about the initial hbsag level of the other participant who developed hbsab.
it would be very useful to have conifermed the previous trial which had:
50% hbsag clearance by 48weeks
90% with hbsag decline to less than 300iu/ml by 48-72weeks
10% no response
are nucs used etv and tdf or even weaker nucs?
i am courious to have this data confirmed because i think etv and tdf have close to 100% response with the add on after 3 years of hbvdna und and probably response irrespective of hbsag level, but of course hbsag clearance is faster on the low hbsag baseline patients
For example if by 72 weeks of interferon hbsag declines less then 300 ui/ml but not cleared, then patient starts tenofovir as the best available nuc. The question is will tdf guarantee that hbsag will not raise to baseline from already declined level of less than 300 ui/ml?
Hi. I've diagnosed as HBV positive with the viral counts of 110000000, my doctor told that i am highly infectious. The good thing is my internal organ esp. my liver is clear meaning no fatty liver. But, need to monitor because of the counts. Before, he prescribed for any medication, he advice to make a research regarding the medicine that he probably prescribe and notes all the side effects. You must read the AASLD Guidelines, after i understood the flow and the side effects, he made me decide of which medicine im going to take. Now, i have started my juicing detox and avoid fast foods, sodas etc that can flare the virus and lowered down my immune system. Avoid taking medicine that contradict your liver. God Bless us all.
this sound insane. I would advice you to rush to a good liver specialist to check your liver status and get proper treatment course. The fact that your liver is not fatty has almost no meaning in therms of hbv.
inthe combo context the nucs is never stopped unless hbsab high and with hbsag less than 500iu/ml there is already immune control on hbv so after stopping peg the remaining hbsag will be slowly cleared on the nuc mono
at levels 300iu/ml or less it is also possible to go on and clear without therapy and peg will keep its effect for another 5-10 years after stop but who knows better go with nucs mono until clearance or stop peg for 1-2 years and then restart to finish clearing
to me it has no sense to stop peg with a declining hbsag, there are trials with peg for as long as 5 years.....
how can be explained that hbsag can have very rapid and fast decline from thousands of iu/ml to hundreds but once it reaches hundreds kinetics changes and hbs clearance goes very very slow comparing to previous clearance speed?
Let me first congratulate you on the latest result and thanks for sharing your experience with all of us. Second as i have twice a month a connecting flight from paris to Rio Brasil and my wife is from nuits st georges so i am half of the year in france working 6 month at sea in brasil and the other in france and Morocco on a rotta of 28 days on/ off. It would be much appreciated if you can help with forwarding your doctor's contact detail as i recently was affected and discovered HBV on the 12/12/12. I have seen one doc in casablanca but i was not satisfied and all the unswers to my querries were found here in this forum thanks to stef and all the others. Also my blood test got send to france from casablanca HBS DNA, and according to stef i need to do 3 more Fibroscan, HBV QUANT, and genotype these 2 latter to be done in france since lab in Morocco do them.
Hbs ag positive Hbs ab pos 2 iu/ml
Hbe ag neg. Hbe ab pos
Dna: latest 200 iu/ ml
All other blood alt and so on within the normal range.
I am off the ship on the 17 th august straight to paris and i would like to book an appointment with your doctor before hand since i am not concidered an acute person even with vry low result and passed the period of 6 months my body was not able to deal with virus. Therefore, i would like to consult an experienced doctor like yours that can do the follow up even i am sure that by having stef and other members inputs in this forum we are all becoming pro in dealing with HBV virus.
So please if you don t mind forwarding you doctor's contact details as i have no idea if there is any good one on Dijon and also Paris is practical for me.
so bad we dont have hbsag quant in iu/ml, the data of hbsag quan, hbvdna and hbsab would help very much to understand if peg could help or if it is already so low that even israel hbv vaccine could finish to clear it
That is the killer about my job being at sea. As mentionne stef i will be off on the 17 august and as i only learn from you guys about this tests and could not understand why my stupid doctor didn t ask for them. So once i touch land i will have them done. Also i wanna have my hep A vaccine done and since there is mo harm of having Hep B vaccine done i will try to have the first shut done and see if it can boost the HBS ab and increase them from 2 Iu/ml to a bigger number. Also after i have the quant result and if takes to go to jerusalem for the israili vaccine i will take the trip.
Thanks for the hint yes i beleive that it is so low In my case after seing all in her numbers for HBS ag. First test was 150 iu/ ml 12/12/12 i was on a strict diet no red meet no fried food just salds and grilled chiken breast or white fish including grille sardines. Red and black radish, countryside lemon at the morning mixed with 2 big spoons of honey. Cold showers in the morning. Chickpeas over night soaked in water and drinking it the following day. Safran tea. All this for 3 months then my HBSag dropped to 29 iu/ml
At that stage all i was hearing is no point of having the HBV vaccine done since this needs to be done before infection. But now i convinced with such low figures i would lik to give it a try and see if it can make a difference in my case.
Stef in case i have to take peg after my hbs ag quant result my concern is i am at sea for one month and on land for 1 month and i beleive this peg medicine come as injection every week how would i go about having this latter done at sea does it come on a pills form.
Stef could you please clarify if the Sci-B-vac israeli vaccine
Can only be found in singapore, australia, china, india, korea, philipines, vietnam and ofcourse isreal.
Or could be found some where else what about france or any coutry in europe like spain, canada, states, Morocco or any adjacent country.
Where can i have this vaccine done.
For how long zadaxin can be taking at what doses and intervals. I ve seen unfortunately according to the web it is just in phase 2 before approval in europe. Meaning i will be traveling to china this time for Zadaxin can it be transported with out refrigiration. does it come only as injection or pills as well?I have cut milk and any dairy product since 12/12/12. Fruit wise i eat only apples, orrange, pinaple, pears, i have been drinking coffee a lot. What about Guarana since i am in brasil any good for immune system.
Argentina, Azerbaijan, Bahrain, Brunei, Cambodia, China, Dominican Republic, Hong Kong, India, Indonesia, Kuwait, Kazakhstan, Kyrgyzstan, Laos, Malaysia, Maldives, Malta, Mexico, Moldova, Pakistan, Peru, Philippines, Russia, Singapore, Sri Lanka, Thailand, Ukraine, United Arab Emirates, Uzbekistan, Venezuela, Vietnam
Oh the good news i work in brasil and according to bellow they have Zadaxin in brazil the only issue is 2 shots every week and i can t have the shots while on the ship so in my case it will be 8 shots in the month i am home. The other issue is if i buy them in brasil and tempreture to be at for this 02 to 08 c and it takes me 24 hrs to get home would they be ok out of fridge for this period.
Zadaxin location in the world:
The other good news that the lab i am using still have my blood to perform HBSag quant so i should have the result next tuesday unfortunately not enough blood in there to be sent to france for genotype have to wait till 17 august.
Intersting stef observe the finding in the link bellow. If you remember i mentionned if jessner and kanof has anything to do with hep b. my feeling was right. While they were doing trials in isreal for Sci-b-vac 10 persons taking the shots develop systemic lupus erythematosus.
Jessner & kanof is a dermal variant or form of lupus cutaneous. This latter since 2005 was imparing my imune system by attaking body cells and tissue resulting in inflamation that weekened my hbs ab resulting in hbv positive with low figures.
So in my case that jessner and kanof symtoms came back on 1 st july i am so keen to get of the ship and have my blood tested against hep b and i have a feeling that will be neg this time TBC on the 17 august.
Also Stef knowing that i have jessner and kanof and the Sci-b-Vac trial resulted on having 10 people developing systemic lupus erythematosus i will just cancel my trip to Isreal to have this shot done and instead i will get the other vaccine b. Do you agree with this decision after the findings above?
Hi Im from the Philippines, also had a chronic hbv, are the medicine you've discussing here in the forum are available worldwide? if so, how much you've spending in those medicines? hope to get response from you guys.
Hi stef i rcvd an email from med help stating we are not allowed to put any links which i didn t know but now i know. So here is one of the statement :
In 1996 I was finally diagnosed with Lupus erythematosus, and It took years to diagnose it. I did have a second opinion from a prominent doctor in NYC. The medications I was taking got me so sick. the last and worse was Methotrexate. I gave myself a FDA pharmacy medication break and actually I felt better for a little while.
Five years ago my lab work said I had Hep C. Since then I have had many blood test and a couple of major surgeries. Hep C was gone from the diagnosis and the Lupus diagnosis was back. Two years ago I had to have four vertebrae fused. I have degenative disk disease. I walk with a cane and I'm usually in pain. I accept what I have and just deal with. I always had jobs that required physical strength and stamina. I'm not angry but occasionally sad that I cant do the things that I enjoyed.
I recently divorced and relocated with my children. I'm under a lot of stress. I have not been feeling well. I have sudden flare ups, my skin, joints and muscles are exploding in pain, my vision is sometimes blurred, I have ringing in my ears, my hair is thinning a lot, my fingers on my right hand is tingling and I have an uncommon skin rash lately even for Lupus. I have a new symptom my head is shaking. So...I started with a new rhumatologist. A full Blood test (non fasting) was immediately taken and Hep C came up as positive but Lupus was gone. The doctor feels definitively that I have Hep C and nothing else!. He told me that depression and stress cause pain. I know they exasperate pain, but I'm not a hypochondriac nor am I hysterical woman. I am going for another blood test tomorrow to confirm the Hep C result. This doctor does not have the best personality but I will finish with the testing he requested.
Could it be possible that Hep C masked itself and gave false / positive reading? If so, why was I treated by the other rhumatologist with methotrexate for so many years? Can anyone shed some light on this situation? I'm only 51 and sometimes I just want to be gone from this world and the pain. But I have responsibilities, children and a very demanding parrot that needs my care, ill work this out.
You miss understood me stef i am HCV negative. this is for the HBV guys i might be the only one having both HBV and jessner and kanof. i was only making the comparison between the exemple or case above stating HCV while having Lupus. on soflab case my case i am having HBV and jessner and kanof king of familly of lupus. and both sikness have to do with imune system HBV T cell and lupus B cell mulfunction so my primary understanding to this when a T cell is missing one of its element that was stolen from B cell HBV occurs and jessner and kanof vanished for 2 years. I will be confirming this once i have my blood tested on the 18th of august and since this jessner and kanof is present on my skin that means to me that B cell got weakened by T cell stealing B cell element so i should be HBV negative to be confirmed on the 18th of august test. if both HBV positive and Jessner and kanof are present after the next test i will understand B & T cells disorder meaning to double check if i have auto-imune disease.
oh come on, never think of going from this world. one day all our pain and suffering will be treated by god. be optimistic and you should be, after all there is good progress in research is going on. not the best but we will have good treatment options in next 5 years. enjoy whatever we have thats the key.
Newtr the obove words are not mine from a sick female living on the state i was only searching the net and found the obove statement to compare it with my case to see if there is any connections betwn hep b and lupus since my self i have both hep be and jesner & kanof family of lupus. I am always optemistic and never let hep b nor lupus take my smile away and beleive in god who helped me clear prostate infection after 5 years of suffering at the age of 25 to 30 while the all medicine and medical interventions failed and with simple herbs from a herbist cured my infection with god s will so i am so trained on how to deal with any kind of sickness since.
A few weeks ago I received the results of my blood test at week 48 (I made the test in August but I see my doctor only every three months now, so I receive the results very late).
HbsAg is still positive but very near to the threshold: 0.09 iu/ml (was 2.25 three months before).
I had good news for HbsAb: 40 miu/ml (was 6 three months before). So HbsAb is positive now.
Neutrophils and platelets are still low. ALT level is normal, it never increased with intf.
I'm still taking entecavir, according to my doctor I can stop it six months after the HbsAg clearance. I hope that I'll be able to start the countdown with the results of the blood test I've just made. I'll have the results in February. I could call the hospital to have the results earlier but I prefer having my doctor in front of me reading the results. So I'll wait.
I stopped intf in August and I'm very happy because I'm slowly finding again my previous energy, even if I did not suffer so many issues with it (but I was really stressed making my shots each friday).
Amazing how rapid and fast the hbsag drop can be when you have it in thousands and how long it takes to clear when titer falls to very low, say below 10 iu/ml. I hope you have cleared hbv by now already.
I only checked vitd once, in August 2012 (before starting interferon). It was 29.4 ng/ml. I never supplemented it, my doctor being skeptical about it. But anyway I have a small deficit (vitd should be higher than 30 ng/ml) so it would be wiser to start taking it. I'll read the related posts in the forum to have more information on vitd, unless you have a suggestion on the most suitable dosage.
My fibrosis level was Metavir A1F1 in February 2005, before starting the treatment. When I made a fibroscan last year my liver was in very good shape, the doctor said that I have a "foie de bébé" (a baby's liver).
I stopped intf in August and I'm very happy because I'm slowly finding again my previous energy, even if I did not suffer so many issues with it (but I was really stressed making my shots each friday).
If anyone is not stressed about making their shots each week, then you are not human.
I am happy to see a success story. Anytime HbsAb appear, then it is a success. Although how do you get neutrophils and platelets up.
Hello everybody, I'm sorry for this long period of silence.
I don't have good news to share. As you remember, after 48 weeks of interferon + entecavir combo I ended up with positive HbsAb and HbsAg still positive but very near to the threshold: 0.09 iu/ml (I quote from my earlier post). That was in August, last year. That's when I stopped interferon as foreseen in the trial where I had been included.
Stopping interferon didn't bring any good to me. HbsAb became negative and HbsAg started to increase (now they are around 300 iu/ml).
That's a big deception. My feeling is that being in a trial is somehow good because your health is constantly checked. But it means also having some constraints like no therapy adjustement. My doctor could not clearly say it to me but I think he wanted a different therapy for me with respect to the one foreseen by the trial. At that time he told me about a "no-nuc" therapy where patients with very low HbsAg level (like me) must stop taking nucleoside treatment and see if thay can heal after an ALT flare. That seemed incredible to me. Anyway he was tied to the therapy foreseen by the trail so I continued taking entecavir only.
Now I suppose that HbsAb will raise up to my previous value when I started the itf+etv combo, i.e. 3000 iu/ml.
I asked my doctor if I should start again taking interferon, he said that it will be useless because it seems it has no permanent effect on me, according to the results of my blood tests.
So for the moment I go on taking entecavir only. But I still think that I missed a very good opportunity to heal. I still ask myself: is my doctor wrong and did I stop interferon too soon?
I also had some news about the results of the peg+antiviral combo trial. In my hospital 64 people have been included in the trial. Among them 6 people cleared HbsAg. At the same time in another group of 64 people taking antiviral only (no peg) they had 1 case of HbsAg clearance. These are disappointing results according to my doctor. But I don't know the HbsAg levels of the participants before taking the peg+antiviral combo. Maybe HbsAg was high like in my case. So this is not in contraddiction with different results saying that the combo works well when HbsAg level is low.
By the way, is anybody aware of this "no-nuc" therapy?
Very sad and disappointing news! But could you share what was your anti-hbs titer when you stopped interferon treatment? Did you boost it with vaccine?According to your doctor will entecavir be able to hold your hbsag around 300 iu/ml as it is now without further increase?
At week 48 when I stopped interferon HbsAb was 40 miu/ml.
I did not boost it with vaccine.
According to my doctor entecavir alone will not be able to hold HbsAg as it is now (300 iu/ml), he thinks that it will go as high as it was before starting interferon.
I don't think you should be too disappointed. The effect of PegIFN has a very long tail, so the benefit may come later.
Can you please check your message:"Now I suppose that HbsAb will raise up to my previous value when I started the itf+etv combo, i.e. 3000 iu/ml. "
Is there a typo?
I think the "no nuc" referred to observations by doctors that after prolonged treatment with NUC and achieving undetectable hbvdna, some patients who stopped NUC had a ALT flare and then managed to clear HBsAg. There is an on-going clinical trial to test this:
So I don't think it is a therapy that will work for everyone.
Thank you for letting us know the results of your trial. We await details that may identify which candidates (those with low baseline HBsAg?) can achieve a cure using PEG + NUC.
désolé pour c nvlls vraiment c est etrange ,j ai croyez qu une fois les anti corps apparaissent , c est bon ,puisque le system immunitaire a connue le virus et commence a lutté contre
vous etes en qu elle region de France?
mo aussi j ai l hepatite b et je crois que je vais bientôt entamé un traitement
sorry for the bad news it is really strange, I have believed that once the anti bodies appear, the immune system is known the virus and begins fought against
you are in wich area of France ? I have the hepatitis b too and I think I'll soon start a treatment
i think the wrong in your case was stopping pegintf before complete hbsag clearance and stable hbsab, and this is a clear rule of hbsag guided therapy of hbv.of course being in a trial is very bad because you cannot adjust or add.the biggest mistake is also stopping pegintf at 48weeks and all studies showed that maxium effect of pegintf on immune system is between 48weeks and 96weeks (not less and not more).in mono peg 48weeks has about 7-10% of clearance while 96weeks goes up to 20-30%
anyway these are my suggestions and maybe studyforhope can add more:
keep etv now and monitor hbsag, you should not go to more than 1000iu/ml because there is immune control at these low levels
keep an eye on your vitamin d levels and keep them at 90-100ng/ml
restart peginterferon in 6-12 months according to your willing and sides had during peg
to avoid relapse it is mandatory to get hbsag und and hbsab to high stable levels like 250miu/ml, as suggested by studyforhope when hbsag is undetectable there are still millions of it in the circulation so high hbsab needed
the other good thing is that by restarting pegintf you will get hbsag undetectable for sure.i dont know if waiting or restarting as soon as possible can make a difference on results maybe studyforhope has an answer on this
as to the stopping all therapies now i think it is risky because you may clear or relapse badly both hbsag and hbvdna, in the second case all the years of nucs making hbsag lower and immune control are lost/wasted
Hello Stephen, yes, there is a typo. I wrote HbsAb instead of HbsAg.
HbsAg were at 3500 iu/ml when I started the combo trial.
Thanks for the link on the no-nuc clinical trial, I will check it. Your statement on the ALT flare corresponds exactly to what my doctor said.
About the results of the combo trial, the information I have is that people who had HBsAg clearance had also experienced a previous HBe seroconversion before starting the trial. I suppose that also having a low baseline HBsAg is an important factor, my doctor being surprised by the result I had (only until week 48, unfortunately...) starting from 3500 iu/ml.
Hello Stef, thanks for these explanations. At the hospital they also said that HBsAg must be kept lower than 1000 iu/ml. But it is increasing fast: at week#48 (when I stopped interferon) I had 0.09 iu/ml; then at week#60 it was around 6 iu/ml; at week#72 it was 30 iu/ml; finally the last results I had (week#84) was 300 iu/ml. Sorry, I don't have exact figures, results are just communicated orally to me.
Anyway I try to concentrate on the good news: peg-interferon seems to work well for me. So I'm ready to start it again if necessary, also considering that I didn't have heavy side effects.
Your situation is unfortunately not untypical.
Restarting ifn now might bring you a more permanent control of HBV remnants in the end, possibly depending on the length of ifn therapy.
While the immunological reasons behind these different outcomes are basically known, it is currently impossible to analyze this in an individual patient. Availability of effective TCell epitopes combined with presence and proper activation of TCell clones is the true reason behind success or eventual failure of ifn mediated immune activation, a complex battle with numerous critical parameters.
In my opinion, the svr rates will increase once frequent vaccinations with an HBV core containing vaccine will be added in the phase of low virion presence (UND DNA LEVELS). This will add the missing stimulus to increase TCell recruitment in the periphery.
At this time such a core vaccine is in development in cooperation between Cuba and a french company, but availability is possibly far out.
Using available hbsag vaccines in the phase of low hbsag to boost hbsAB levels is likely only marginally effective. It must be understood, that even a high AB level is never completely protective against localized reinfection in close proximity of an infected liver cell. The core vaccine will hopefully trigger Tcells that attack the slowly growing clusters of reinfected cells in that situation, leading to a permanent control of the remnants.
Are you taking any supplements like Vit D3? What's your D level in your blood?
I really think your immune system must be tip top, pre, during and after IFN. D3 levels must be at least 50ng/ml pre-IFN treatment.
Even with the boost of IFN (which is integral), your own diet and vitamins intake (selenium, D3 and zinc) must be consistent.
However, having said that, you are a responder to IFN. Just need another oomps! to get that HBsAb up high. Vit D3 supplements might just be the ticket. I was lucky to have my HBsAb going up every month from 55 (when it first appeared) to over 200 and now over 300.
No, I'm not taking any supplements. Two years ago Vit D was 29.4 ng/ml. According to your post this is too low. But my doctor once said that Vit D has no influence on VHB (and it's difficult to insist with him and he stopped the discussion). I'll try to discuss about it with my family doctor, to have a Vit D blood test.
Up to now I've taken entecavir during my breakfast. Reading old posts I saw that I should take it two hours before / after the meals. So I'll delay my breakfast to see if I'll be able to stop the HBsAg increase.
it is dangerous to take etv with meals because absorption is low and this might induce resistance overtime,anyway you should be safe on this
the best possible thing would be:
start 10.000iu of vit d daily, this is a normal dose and half what healthy people can do in an hour of sun exposure.no tests required with this dose but i d choose a good lab and have the test.
vitd can be bought on uk online stores,bigvits uk is very cheap and fast delivery
entecavir 1mg or tenofovir or keep entecavir and start peginterferon as soon as possible
again as an italian worldwide known good hbv research said:
most liver specialists are stupid and just follow guidelines with no knowledge of the disease
many french doctors are killers because many patients died on hcv trials.i admire the courage of this man for saying the truth at a conference
so trust liver specialists only when you see they said correct things about latest research and when they are not arrogant, they are there to cure you and not for themselves pleasure.switch to another one if they dont fit this
You should still take regular Vit D3 as a general health, just 1,000iu a day (which is standard) can push up your levels.
Yeah, I was on ETV for nearly 2 years. I take them 1 to 2 hrs before breakfast. Someone here said taking them after dinner, when you are going to bed. So all these time you have been taking ETV with food? Not sure why you have to do that but the Dr and Nurses should point that out clearly when prescribing and also the Pharmacist should also point that out.
Yes, you can check your D3 levels with a family Dr. Most likely it has decline because I realised now that this vitamin is so deficient in many people that don't take supplements. When I was on ETV, my levels was 20ng/ml and I don't take any supplements. In 3 months before IFN (after reading it here from Stef - thank you Stef), I pushed it up to 51ng/ml by taking 5,000 to 10,000 iu daily.
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