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29837 tn?1414534648

Feel free to use this thread for anything

I know how difficulot it is to get a thread going. So go ahead and use this one...

Magnum
34 Responses
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Avatar universal
Hi Sidey,,,,Yep,,the riba can turn you into a monster at times.  When I did treatment,,,I would have to count to 10 so many times before I slapped someone! Brings out the boldness in us!  I do remember when taking the meds,,,I often would get a twinge in the liver area and my dr claimed that it was the surrounding area as the liver,,,you could feel no pain!  Let me know how your scan goes.  I often told myself as I was sick through tx and felt the liver "twinge" that the meds were at work! ha  Well,,,I did make it so it will get better!  Happy Thursday Sidey!  Post up at top to meet others when you come back!
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Avatar universal
Thanx hun, you are of great help.This is going to sound funny, but I have a pain in my left side. They gave me a C.T. Scan and it showed nothing wrong. Then colan oscopy, and free and clear.The pain is real, and it realy hurts just like my gall bladder did before they removed it.Now going back for another C.T. so they can compare. I feel like such a guinea pig !! So Sidey has a side effect in his side !! LOL.....About my eyes , I have had dry eye for years, but not the bad vision I have now.Just did #11 injection, that doesn't bother me at all.# 12 on the 25th. One quarter there!! The thing that bothers me the most, and I have a lot of sides, is the damn Ribavirin !! Mentally it makes me a mess!! For a couple of hrs. somtimes three.I can cry over nothing or become a very rude and crude customer, if you know what I mean. I am taking Interferon and the reb. and Wellbutrin, Zanax, Megase for appetite.Multi vitamins,and a whole bunch of unexpected Sides ........I hope I have been a help to others, and will continue with  my progress. This is a cool place, guys and gals, and thanx a ton!!! Just talking or typing to another person with this Crapp is of great help. It made me forget about my nagging sides!! Thanx ...................SIDEY.............
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Avatar universal
TX = treatment
BX = biopsy
sx = sides

I'm sure there is more that you will run across and we will help you out on abbreviations.  You are a geno 4?  Yes,,,I think geno 4's are in the same duration as geno 1s.  I WAS a geno 1A and finished 52 weeks a year ago in January and am now SVR. That means free and clear LOL
The meds also played with my eyes my vision was blurry,  The meds will dry them out and you need to use some eye drops to help keep them moist.  I took ibuprofen for aches but never had bleeding.  You need to call your dr about what you can do for some of your sides.  Its no picnic Sidey,,,,I agree,,,,almost feels like you have the flu all the time or coming down with it but there is an end and you will feel your old self after you are through.  There is tons of people here that will help you and guide you through this tx so you don't feel all alone,,,I'm one of them,,,,anything I can help you out with,,,I will.  Post a question up at the top of this thread so many can see you have joined our group!  Welcome aboard Sidey!!
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Avatar universal
On the 25th.of jan. I will have done shot #12. Is that signifacant? I have hcv #4, doc says its just as treatable as #1. Is # 1 hard to treat? i have just gotten over the anemia and have a lot more energy now. Doc. says I am responding. I just wonder how long I will have to do the interferon & rebitol. A full year? I have had a lot of sides, and they all seem to go away. Will it get worse? I exercise moderately and drink a lot of ensure. I way 160 and have stayed there for quite a while.Was taking Ibuprofen until my stomach started to bleed. I quit that and the bleeding went away.Funny thing so did my aches in the bones. Injections dont bother me anymore, but the ribavarin seems to efect my mental condition.Disconected and realy depressed.But it all goes away after a few hours.I can't see worth a poop or remember anything to well. Im doing this pretty much on my own 24 -7. My girlfriend works her butt off and seems to be sleeping most the time when at home, so this thread realy helps! I find that being positive as much as I can really helps to pass the time and lesson all these dang sides. This is really kool that you peeps have made your own threads. I thank you more than I can say !! Just Me Sidey ~~~~~~~
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Avatar universal
Glad to see you here and doing so good!  #9 already and won't be long before you will be finishing up and SVR all in one!!
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Avatar universal
Thanx hun. I have alot of questions. What is tx & bx & cdr? Im not in a study.
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Avatar universal
I have started  9 shots ago and with the pegasys and the rebitol, aka ribavirin.Was told not to take seperately. But thats just me and have never heard of taking it alone.By the way im a hcv #4 originates in africa, go figure. How did I get it from there? Former I.V. user 15 years ago . Have had hcv for 22 years, only found out 2 years ago.All those broken arms , legs and scrapes and bruises and not one test for liver, or hcv's. I do realize they only discovered hcv 10 or so years ago. All the sweats and chills wen't away from me at 3rd. shot, now just 24/7 nagging flu. Stay up and exercise and drink plenty of water before and after injection . It sure helps me. Shot yesterday, and don't feel a thing. When your sick stay in bed if its that bad, but overall, get up and do something, it allways goes away eventually. Stay Positive !!!!!!!!!! And think healthy...........Sidey~~~~~~~~~~~~~~!!!!!!!!!!
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Avatar universal
Thanx for the open threads magnum, they really help a lot. I just spilled my beans on N.Y.Girls thread and want every one to hold yor head high, the sides do go away eventualy and it's worth it, realy it is . Be positive exercise and stay out of bed when you can, that can be very deppresing and detramental to your recovery. Thanx once again. Ive been there and only on injection #9. Signed Sidey ~~~~~~~~~~~~~~~~~~~~~~~~ good luck everyone and thanks for the open thread !!!!!!! Your service is of great value !!!!!!! 43 male and have had all the sides. If anyone would like to have correspondence thru Email let me Know ....................Sidey
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Avatar universal
Thank you everyone for your support. God love you all! Cuteus....Did you finally clear after 72 weeks? I am going to see a different specialist that engages a study using smaller amounts of Interferon weekly (0.05 I think) to stave off further liver damage. I would like to try the whole TX again and see if I clear after 12 weeks though. I used Pegasus and I understand that Pegintron sometimes works better. Also, I was wondering if I reinfected myself by not changing toothbrushes and health products enough. I work so hard with my family to protect them from me, I stupidly should have looked at myself as a non-HCV person in terms of this while on treatment.
The beauty of a board like this is that 100 non-HCV people can say "I'm sorry" to you for the situation you are in. But getting a response, from all of you, that are going through this, is a much deeper experience. Thank you for the support. I hope I can help give support to all of you in the future.

DM
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100019 tn?1335919717
Hey there Hope -

To answer your question about where could the virus hide during the time one is undetectable.

Well, the short answer is in your bone marrow.  But usually that is during TX and will breakout after TX is over within a relatively short time 1 to 3 months.

I do have a friend that was undetectable for 7 years and then tested positive again.
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Avatar universal
I am so sorry to here what your going through.  You can retreat like many on this site has.
This is just a thought,but maybe it's something else to do with the liver.  I think you should see another Dr. just to be sure, also labs do make mistakes, maybe another blood tst is in order.

Please feel free to post any questios you may have.
My prayers are with you,

  BB
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Avatar universal
I posted on Mondays threads.  If you could take a look instead of repeating on this site. I'll learn I guess where to post as I go.  Be Patient with me please.

Sorry for the misspelled Kalio on the other comment.

Cajunlady
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Avatar universal
just wanted to offer my sympathy; virus returning suxs!! cuteus has good -been there done that--advice... do have 2&3 timers at this forum that can offer support & info..It ain't over!!--you can win this fight....Good Luck
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Avatar universal
I am so sad that you are now in this crux. Where is it hiding is one question even the experts can not answer.  The sad fact is that given the fact you were still detectable at wk 12, even though you had a good log drop, they should have tried and given you extra tx, especially with the damage present. A new study shows that if you are still detectable at wk 12, you are more likely to relapse with 48 wks of tx. Viral load has nothing to do with how much damage is happening to your liver. I had 376,000 one month and the next it was over one mill. It has no diagnostic value, so don't fret the viral load.  You do need to try and get on tx a second time. Some members here had to try more than once before getting SVR. Make sure the test used for the viral load during tx is sensitive enough. How low did the one month post tx PCR went? IF it is over 50IU/ml is too high, as some people can harbor a very low VL that goes undetected by today's tests.
I hope you find an option that will allow you to enjoy life for longer than you are now guessing.
I am also in my 50's and treated for 72 wks, because I was still detectable at wk 12. I did not want to chance a relapse and fought with my dr for extension. Some drs feel that the virus "hides" in fibrotic/cirrhotic tissue and might get released into the bloodstream as the tissue heals itself.
all theories. you must decide what is best for you now.
take care
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Avatar universal
Hi everyone,
First time poster and I'll make it short (if I can).
I've had HCV for probably 30 years. Its never been higher than 1 1/2 million viral load and I've felt pretty good. BTW I am 52 years old. Six years ago i had a liver biopsy which showed grade 3/4, stage 3/4. Doctors never really made a comment on it as far as life expectancy. At only 600,000 viral load I went on Psgasys/Copegus for 48 weeks. I cleared and became undedectable at 24 weeks. (12 weeks was 445 vl and over 2 log drop). At one month post treatment I was STILL undetectable. 2 months after that my viral load was at 5 million!!! Never has it been even nearly that high! I can't find anywhere on the web that addresses higher viral loads after treatment.
Now I don't know what to do because I felt good for 2 months and now my legs hurt, am tired and I am itchy. I don't know whether it is the interferon "hangover" or the virus coming back.
I did check prognosis on the web and my liver biopsy results seem to show me (possibly) having 5-10 years of life left. I have no idea how a virus can come back when you are undetectable for 10 months! Where is it hiding???
Needless to say, I am very sad and VERY bummed.
Anyone else have a similar story, advice or honest expectations from here-on-out without 'spin' or hurting my feelings?

Good luck and God Bless to all of you!
DM
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29837 tn?1414534648
Better start getting used to wearing sunglasses...

Magnum
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Avatar universal
Hello. Thanks for posting on my thyroid ? dealing with the irregular heartbeat.I did ? my pcp about this prob. and he looked up my reocords and told me that I just had a extra beat.This was dx thru wearing a hulter monitor for 12hrs. 1 day.However I did request the GI team to to a tsh panel to see how my thyroid is behaving.I did some research and found out that hcv can effect thyroid function.I will discuss this with the liver doc. next visit.I'm also considering a 2nd opinion at UPMC hospital in pittsburg pa.Thanks for your observation

Beagel Bailey are you out there and how are you tonight?

Dyce
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Avatar universal
I figured it out while I was posting that they wanted the riba to be at full strength in your body when you take the 1st interferon shot. Your expalnation makes sense, this may become a more widely used tx protocol.
Nauti, when is your first pcr; I'd be intereseted to see if they'll be getting a more rapid vl drop once the interferon starts.    Peace
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Avatar universal
Good luck with the needles and please let us know how they work out. As Chev says, it could be thyroid which can go haywire on treatment. I'd ask your doctor for a thyroid panel -- it's a good idea to have one periodically regardless of symptons.

-- Jim
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29837 tn?1414534648
Thanks for the heads up on the harpoon needles subject. Just got off the phone with the pharmacist and he will order the syringes and needles you recommended. One strange thing I'm noticing is that my eyes are bulging out. I have to wear sunglasses so I don't scare kids. I will bring this to my doctor's attention. Anyone else experienced this pop-eye effect?

Magnum
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Avatar universal
Berry interesting :) Curious if they shared the protocol with you if that's under wraps for now. Wonder if some are getting sugar pills for the first month while others are getting either riba or viramidine. Can I ask where the study is taking place? Please keep us informed as it sounds very interesting. All the best luck.

-- Jim

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Avatar universal
I am on a viramidine study. I dont know if its Riba, or Viramidine since its a blind study. I am geno 1, I am 185 lbs, and I believe the dose is 1200, 3 pills with the morning and evening meal of whatever it is they are giving me. I'll keep you all informed as I progress. Shots start 1/26/06. Since I am here, I have a whole slew of questions for my Dr. this Thurs when they take bloodwork.
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92903 tn?1309904711
Man, that blows. Really sorry - try not to 'dwell' on it 'till you get more info and a confirmation there is in fact a problem. Post soon to let us know what you learn.

Also, when were you tested? At the end of treatment? Then 6 mos out?

Best wishes my friend.
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Avatar universal
Hang in there buddy - we were all just as shocked in total disbelief as you at one time and we are all doing our best to make it through this rotten thing.

There are a lot of VERY knowledgable people in here who have saved my life.  Helped educate ME so that I could manage my own disease and not rely on blind doctoring.  Watching out for yourself is one of the best things you can do. NOBODY cares more about you than you!

Go to the GI or Hep Doctor, get a good biopsy and find out where you really stand.

Some people have hardly any damage at all - others more advanced.  The biopsy will help you decide to treat or not to treat.

And that IS the question.

Best of luck
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