Wierd side effects

[Cjb3695]

So i've been on tenofivor(viread) for about 8months now. I've experienced most of the side effects listed. Recently i've been experiencing a pain from my upper left chest throughout my arm. Mostly at night, then during the day I feel a tingly feeling throughout my body. The last time I had my tests done I was at 70 hbvdna. Of course its not the best test because the American health care system blows. But I've heard we are now getting fibrosis scans and hbsag quanitity scans. Anyway the numbness is consistant and constant. I did miss one dose of the viread to see if it would still occur. It didnt happen. Of course when I continued the next the day it returned. My docter said I have to see a neuro consultant. She thinks its something with the nerve, which is possible because I ran an ECG test for the heart and it wasn't that. Any suggestions or ideas?

[Cjb3695]

So I wanted to confirm mt Sinai does do the fibrosis scan! Thx for the help guys!

[Cjb3695]

Ok thanks for the valuable information. Cant tell you how much its appreciated! I live in NYC so Im going to look into MT Sinai hospital. Do you guys know of any other locations in NY that might have the fibroscan?

[stef2011]

...please do not call it prototype fribroscan is already a old technique they are available since 2012 in france, germany and italy, they now have even ultrasound/fibroscan dual machines on the market

anyway Mt. Sinai hospital in NY has a fibroscan but they dont screen all those requesting and dr.schmidt in LA has a fibroscan too

[calmama]

For me, the anxiety of not knowing is worse than the small risk of biopsy complications.  

I heard Mt. Sinai hospital in NY has a  prototype Fibroscan machine (you have to confirm this information yourself).  If you live relatively nearby and your doctor can order the test for you to have it done there, go ahead and do it.  Check if your insurance would pay for it.

[stef2011]

i did 2 biopsies in my life and they do damage liver (they cannot be repated every year) and there is also a death risk, low but somebody will dye of it.

they can give very high percentage of false results because the quantity of liver is too small, now that europe is not doing it anymore comparation with fibroscan is showing how unreliable it can be, i do suggest to take a low cost flight where fibroscan is available in new york, LA, canada or mexico

if you get a biopsy make sure to get cccdna quantity, at least you get the most realiable test for hbv

here is how cfs pataients ships samples to europe for testing, if needed you can contact with them at CFS forum if you find it difficult to prepare samples nad documents with fedex.i guess you just have to declare non infectious samples
contact indian labs too before shipment so that you know how they prefer the samples.hbsag is very stable so it won t be necessary anything especial

http://forums.phoenixrising.me/showthread.php?10963-help-with-redlabs-testing&highlight=fedex+blood

[Cjb3695]

@stef2011 How do I go about getting my own blood sample and sending it through fedex safely?

@calmama I was thinking about the liver biopsy. People made it seem so much more then you just did.

[calmama]

You can have a liver biopsy to check your liver damage.  Yes it's invasive and cannot be repeated often.  But usually it involves only mild discomfort the day of the procedure.  Before Fibroscan becomes available in US, a liver biopsy will give you some idea about your liver damage.

BTW, I had one done.  With the sedatives, I couldn't even remember anything they did (or I did) during the procedure.

[stef2011]

check carefully kidneys in US, it is a must during tdf to have monthyl kidneys function tests i posted earlier.it must be tested even if you are all ok

[stef2011]

we have copied from what also CFS patients are forced to in US, they also have no tests in US

you can ship by fedex to india labs, we posted somewhere in the community an indian lab network who agreed to test fedex samples, try a search by "india hbsag quantity"
if you need you can have all tests done there, better machines than in US and probably cheaper too

as to fedex you have to prepare the documents for non hazardous, infectious blood sample or biological sample

[Cjb3695]

Its not my back, its more my left chest. Its sometimes so crazy to the point where my whole left side of my body is aching. Its like a bunch of bubbles or something on my left side just going crazy... But it only happens when Im on viread. I decided to continue using it and try to bare through it because I had sometimes where I felt really good.. What really ***** is I cant measure HBSAG quanitity.. and I cant freaking test for Fibrosis in USA. So I feel like theirs no progress to look at. Is there a way I can send blood somewhere to get my HBSAG quant? How would I go about getting blood and shipping it?

[calmama]

I agree with stef.  Don't go off tenofovir like that.  Resistance is a one-way road you don't want to go down.

[stef2011]

by the way i have a small back pain on the left too but i dont care about it because all blood tests are normal, it comes and goes and very mild

tdf is known to have back pain sides but they are not important unless you cant walk or move because of it or if you have abnormal kidenys function

[stef2011]

i think you should find a good doctor first, then have a full blood check for everything that might be correlated

do not go on and off tdf you may develop resistance

you may also make full blood tests to ensure everything is ok and then combo with entecavir for 3 months so you can then stop tdf

there are no tests for kidenys damage. all tests about kidneys are very poor sensibility and when creatinine gets from low/normal to 1.5 50% of kidneys are already damaged......so have you checked creatinine before and after tdf if any change?have you checked creatinine clearance (24hrs urin collection)?
do check kidneys both blood tests, urine tests and kidneys ultrasound

there is also a new test with good sensibility but i dont remember now, maybe something like c reactive protein, check on wikipedia kidneys function tests and look for these new tests

[Cjb3695]

Hmm but why does it occur when I'm on viread only? Then it's affecting my left side of my body which is making me feel it is something not connected with Hbv?? I've been off it for two days.. Thinking of just continuing nd trying to get through the pain?

When I come out the shower I can even see a red patch on my left upper chest which is we're the pain occurs.. I'm worried it's cancer or something crazy...

[stef2011]

it is very stupid to consider those pains, anybody with hbv has those pains, i do have them too from time to time now that i have alt at 54

[lila58]

The cause of the pain you are having can be an inflammation of the esophagus and stomach,did he look into this? Do you have heartburn symptoms?Maybe I am taking the risk not to treat yet,just because I don't have a doctor I can trust.

[stef2011]

your doctor is crazy deadly alt flares are possible when stopping tdf like that, i dont think simple pains justify such a risk

heptech is food, curcumin, pomegranate, grape and so on...they cost so much because that's food with standard content of active antioxidants and vitamins, no need of doctor appoval at all

[grmr]

no no TDF you cannot quit TDF in such way, you need ifn add on to safely quit and then a weekly monitoring if flares occours

[April9903]

Isn't it dangerous to stop taking tenofivor just like that?
I am not an expert, may be stef2011 can give you some advice.

[Cjb3695]

Just wanted to update you guys and get an opinion. My docter informed me to stop taking viread so we can see whats causing the pain on my left chest/ left side of the body. The thing is.. when I stop taking viread the pain stops. Anyway, I've been on viread for 5-6 months sorry about that error. My ASt is normal and my ALT is a little above normal range. As far as I know I dont have any liver damage. But I havent taking anything but an ultrasound..

[Cjb3695]

@calmama Ok so i decided to take 2000iu of vitb12 and the symptoms did die down quite a bit. Im just gonna stay on this until we get the tests done.

@Stef2011 do you think I can still get severe fibrosis etc while on tenofivor? I thought being on treatment prevents these things? Also I highly doubt my docter would approve heptech products but can you explain exactly what they do so I know what I'm taking

As always thanks for the advise!

[calmama]

Those symptoms can result from a lot of conditions.  But I think it won't hurt to check your vitamin B12 level next time you see your doctor.  It's a simple blood test.  It's true most doctors don't check that.  My husband had vitamin B12 deficiency and felt fatigued and started having memory problems.  His B12 level was never checked until he saw his most recent doctor, who said you'd be surprised how many people had vitamin B12 deficiency.  He felt much better after his doc gave him B12 shots.  Fortunately the symptoms are reversible if it's caught early.

Again, your symptoms can be from a lot of things.  But a blood test to check your vitamin B12 level is an easy thing to do.

[stef2011]

all those symptoms canbe easily present even in severe fibrosis or liver mulfunction but you wont see any abnormal liver test for this, blood liver tests have all too porr sensibility

if you can afford just take heptech products for 2-3 months and see if all these symptoms resolve by 1 month of these supplements.all vitamins and antioxidants are in the full heptech pack.
if too expensive just take fibroguard and heptech

[lila58]

I don't know your age but over the age of 50 suplements of vitb12 is a must but most doctors don't check for this.