TOPIC: Feels like possible relapse - plan not panic!

Hi all, haven't been here for a while. Finished 12 weeks of sof/dac a month ago, undetectable at weeks 4 and 8. Type 1, F0-1, 57yo, 39 years with HCV, previously failed on interferon and on inter/riba/bocep.

Felt good for a few weeks after treatment, but the last few days I feel like I've hit a wall. Headaches, mild to moderate nausea. In short I feel liverish the way I used to...

I don't want to panic, I want to plan. If this is the virus coming back, I want to know what to do. I'm going to get a viral load test tomorrow and if it's positive I want to know what my options are. With a waitlist at the only liver clinic in my part of Queensland already over 2000 and only treating about 100 people at a time (yes, exactly the scenario Dr Freeman warned would happen on Radio National), I may need generics again.

All thoughts, knowledge and experience welcome!

Hi Phoenix
I'm sorry to hear of the symptoms and anxiety you are dealing with especially given the peginf disasters. That is something we sure are trying to put behind us and I hope you get good news this time, at least the tx is easy.
There are re-treatment options I'm pretty sure there's a section somewhere here pop a search in. You can always contact the Tassie office and ask for advice too. Even if it's just to reassure you. There's a couple of people having another go. If the outcome isn't great you can still go again I understand.
I'm hearing you.
Wishing you all the best.
Let us know how you go you have friends here
Hugs from Ariel

Hi Phoenix,

Please get LFTs as well. If your ALT is out of range you are probably right, if it is still normal that would be reassuring.

If we need to retreat you that's possible and can be prompt.

Best

James

Do we need to wait till ravs phase out

Or can retreat immediately

NS5A RAVs are typically quite fit so don't decline quickly. They are not created by treatment, they are selected. Many people have detectable NS5A RAVs at baseline, but all that means is they have enough to count.

If you get the NS5B RAV S282T you do have a problem but that causes on treatment failure, not relapse.

I see no logical basis to delay retreatment for most people, provided we can do something different from last time as in pick one or more of longer, stronger or different drugs.

We are all different. I felt terrible from about 6 weeks into treatment and only now (7 weeks post tx) am i starting to feel a bit better every day. I came out UND at SVR4 with all kinds of gastric and other problems. Hopefully it is just your liver healing that is giving you grief. We talk a lot about getting rid of the virus, but a lot of us have liver damage that has to be considered as well. I've got my fingers crossed for you...

Hi Phoenix,

I hope you will attain SVR. But, if you are F0-1 at 57 after 39 years of HCV-infected - it is unlikely that you will die from HCV-related cirrhosis (and its complications) even in case of "viral relapse". Thus, it needs to compare possible benefits and risks of "retreatment attempts". Serious medications (for example, like interferon or boceprevir) may give more "harm" than "good". If there is no urgent need for treatment (for example, severe extrahepatic manifestation of HCV - like cryoglobulinemic vasculitis with damage of kidneys) - it may be better to defer treatment in case of relapse after sof+dac failure.
(www.hcvguidelines.org/full-report/retrea...r-therapy-has-failed)

well I am EOT 7 weeks, the last week has been crap right flank pain , general lethargy, bloating.
I was UND 4, 12 ON treatment AND got SVR 4. iT COULD BE THINGS GETTING WORSE OR BACK TO NORMAL CANT SAY

I'm too in the same panic boat after EOT last tuesday. I have to wait for one more week to get EOT PCR results, didn't do any since started Ledifos tx in January. I'm starting to feel some pain in right abdomen as well as itchy skin all over, just like before tx. Yesterday also got one of those awful headaches that last all day.
I'm trying to convince myself it is just my body getting back to normal, but in any case just like Dr.Freeman said will draw blood tomorrow for LFT's.

Yes this itchy skin is another thing I have, feels like the 1st week on treatment

Don't panic! I too have good and bad days and niggling thoughts about relapse, but was UND at 6 weeks into treatment and just got SVR4 result. Some pre-tx symptoms are still there but probably related to things such as age, fitness level, diet, fibromyalgia. osteoarthritis, candida overgrowth or failure to quit smoking (yet).
Think positive but see your doctor and discuss your concerns.

Ah Phoenix, good luck, I have fingers crossed for you.

Try to think positive, hope all's ok for you.

Love Cindi x

Thank you all for wonderfully helpful and supportive replies. It's kind of normalising that others are struggling post-treatment as well.

Very best wishes to you Darbara, Kenbasman, Geno1b4 and Sonix. May you all be perfectly cured!!!

I ended up not getting tests today, though I'm still feeling very tired. Started thinking along your lines, Serg. There's no hurry. I also feel that after doing the 6 months on inter/riba/bocep 2 years ago and now just finishing this, that I would struggle to find the will for another go right now. And a big part of me wants to get back to just living, cured or not.

Though I think I will follow your advice Dr Freeman - thank you! - and get my liver functions done at least in the next couple of days. Would be useful and reality checking to at least have some data on what's going on.

Ariel, CJ and Tweakmax, thanks for being with me here.

Yet again this forum has helped me through a really rough moment!

Hello Phoenix,

Take the weight off and get some LFTs - if they look OK you can relax, and if not we can make a Plan C for you.

Thanks Dr, will do, and I'll let you all know how it goes. Finger crossed and prayers...