To Treat Or Not , your advise would be much appreciated

[johnny679]

I have had hepatitis c since the early 1980s as I have haemophilliac . I am 32 years old . I had a fibroscan today and was told I have stage 11 fibrosis , with a score of 8.3 . I think I am also Genotype 1 . I am very stressed as I have a busy life work wise and so on , do you think I should treat or wait and are the side effects really that bad , to be honest as silly as it may sound I am worried about hair loss and lack of energy being a single bloke . Your advise would be much appreciated . Thanks

[johnny679]

Not sure yet the doctor told me Im at 8.3 fibroscan and told if he recommends me to start treatment with 12 months I will be seeing the doctor in 5 weeks and he will tell me my options

[Bali05]

Where did you have the FibroScan ?
Was the result 8.3 kPa averaged out of ten readings ?
Do you know what the highest and lowest reading was?
8.3 kPa is beginning Fibrosis but still reversable if you act.
The tricky thing is your result is kind of in the middle and that
is where FS is not that accurate.
In your situation I would run the LabCorp IL28b test right away.
Than decide wether to do biopsy  or treat.

[Trinity4]

Wondering how they biopsy with haemophilliacs because of the bleeding factor?  Maybe transjugular biopsy?  

[Trish77]

I wouldn't worry too much about hair loss during treatment with regards to being single as I wouldn't recommend starting a relationship during this time either.  You might not feel up to much "action" for that matter so I'd keep all that in perspective that for that one year, it's going to be a little quiet on that front if not completely quiet.  If you work through treatment, you're going to need to use your non-work time to rest up as fatigue is a very common side-effect and alot of us were able to work through treatment because we rested up during weekends or evenings as necessary.  You're not exactly going to be a social butterfly through all this!  The drugs are also mood and mind altering so....your social interactions are going to be impacted to some degree.  You want to present the real you, not the drug-altered you.  Then when you get this out of the way and your hair grows back and you've got nothing to disclose to prospective partners....full steam ahead.

As for busy work schedule, that's something to take into account as it's a bit of a crapshoot as to how hard you'll be hit by the impact of the side effects.  I'd start preparing the kind of situation where you can take a bit of time off if you need to over the course of treatment.  Alot of us worked through treatment - not saying it was easy, but we did it and it's very situational.  

If you can wait for perhaps shorter course treatment and also to arrange your life so that you've got a bit of a fallback plan for times you might need a break, you're one of the lucky ones that has the time to do that since you're Stage 1.

Good luck.

Trish

[johnny679]

I havent seen the doctor yet my appointment is in 5 weeks , I am so anxious , my platelets have dropped into the 120 000 's  , I feel so good I am never sick , I guess I will have to wait and see

[HectorSF]

I would advice waiting for the new meds to come out next year. You have time to wait as your liver is not too damaged at this time. If you treat with Telaprevir you should be able to treat for only 6 months instead of the current period of a year. This will make it easier for you to handle the side effects should you experience them.

From my understanding fibroscans are not as accurate when it measures stages 2 and 3. Other on this sight have more knowledge  then I do about this and I am  sure they will comment if I am wrong. Even if you are stage 4 you can still treat as long as you don't have decompensated cirrhosis. So this should not be an issue for you. A liver biopsy is still the gold standard for measuring liver staging.

It is not silly to worry about changes to your body. We all do. Luckily it is only temporary while treating. Wait wait until the side effects are really bad. NO! You absolutely do not want to wait until wait for the "side effects" of liver disease to appear. Many persons don't notice the effects of liver disease until they have advanced decompensated cirrhosis. Once any of these decompensating events occurs, patients survival rates fall down a slippery slope. Survival rates for patients with compensated liver function remained quite high over a 10-year period. By contrast, once a first complication occurred, the survival dropped off dramatically, the survival rate is commonly only 50% at 5 years. Therefore, the onset of any decompensating event is clearly an ominous sign for persons with HCV-related cirrhosis.
At that point your years to live without a liver transplant will be limited to the single digits. You will be become more fatigued all the time and have many other debilitating and life threatening symptoms which will make your fears around side effects of HCV treatment pale in comparison.

Please talk to your doctor about being treated when the new generation of HCV treatment becomes available.

Good luck.
Hectorsf

[sunshines76]

Johnny, what do your doctors advise, both hematologist and hepatologist?