i think i have had viral breakthough due to huge interferon reduction at week 5

[alico222]

I think I have had a viral breakthough when I was reduced at week 5 to 90mg interferon, as I had night sweats etc.
Does anyone think this is the virus out in the open. Is it worth me carrying on with treatment.
Thanks
Alico.

[meakea]

I see from another post that you are in a study with Lambda so my question to you above doesn't pertain.  :)

[meakea]

Are you on pegintron or pegasys?  I used Pegasys so the dose with that is the same for everyone...180.  I believe the dose is weight-based with Pegintron.

[nomorehepcliz]

you were reduced to 90 mg?  hmmm, that's what I have been taking all along - 0.9 on the syringe.  another question for my nurse... is there a standard dose, like there appears to be with the Riba, depending on weight?

[alico222]

thanks for all replies, know its been a while but heres an update.
those sweats on interferon dose reduction were mildish and stopped when went back on full dose. my 4 week pcr was not undectable and after the reduction the viral load did keep dropping abeit slowly. my 11 week pcr was still detectable 400 copies, but its since this time had terrible sweats again. i was given an anti-viral medication for suspected shingles which i wondered if it may have worked against the ribavirin or interferon.
problem is i can't ask for pcr again as 1. they don't want to do another until 24 weeks and 2. even if i did, there was one week after the 400 result with no sweats, so likely hood vl down that week, so if it went up next few weeks prob numbers similar.
i am worried because it seems to me when interferon low i have sweats, and these were exactly like pre treatment hcv sweats.
also worried about carrying on treatment if interferon not working. Could this make the virus interferon resistant or create an auto immune response in body?
also a question to everone who has retreated... can you retreat with same drugs? or do you have to wait for new ones...new polymerase drugs for me... geno 3 will prob be long time coming.
thanks all,
alico

[paen53]

I agree with the others. Take one step at a time and  ask for a sensitive PCR to determine, if in fact, you have had a viral breakthru - this is the only way to know for sure. Run another CBC (complete blood count over here in the US) and see if your ANC has rebounded. Even if they have rebounded, talk to your Dr. about Neupogen to keep them from getting too low in the future, should you need it. I'm not sure how your health are system works over in the UK with rescue drugs, but even here it can take some time to jump through all the hoops to get an OK. Try to stay ahead of the ball in that area.

Has your Dr. talked about the new DAA's coming out here in the US and when they will be available in the UK? Not sure what genotype you are........

If, worst case scenario, you have had a breakthrough - hard as it is, you've learned something this go-around. Probably (likely) need a more exerienced liver Dr. and Plan B when your Neuts fall again since interferon looks to be in the mix for the near future anyway.

Keep us posted. We all learn a little bit more from each other - that group experience thing, ya know. :-)

Hang in there, Pam

[Dee1956]

I am sure you are really scared and confused.  Please do not stop your tx.  Only your doctor can tell you what to do.  Many people  have had dosage reductions for one reason or another and have still SVR'd
Dosage is reduced due to latest blood work and concern for your safety which your doctor decided..
I wish you all the best
D

[Trish77]

Do not worry yet about a viral breakthrough - wait on a PCR result for that and don't borrow trouble before it's time.  Your immediate issue is addressing the low white counts so that they don't drop any lower and so that you can resume normal dosage if possible.  Your doctor does need to address your neutrophil count dropping to 500 this early in treatment in some way.  Do you know what neupogen is and have you discussed this with your doctor?

Have you had a biopsy to tell you how much liver damage you have and is this your first treatment?

[willing]

you'll need to gather more information to make that decision:
- what vl tests did you have since start of tx (at what week did  you und)
- why did Dr. reduce ifn by 50% at w5 rather than prescribe neupo and how long was reduction?
- what fraction of full-dose meds have you done so far?
- have you in fact had a breakthrough (sensitive PCR needed)?

with that in hand you may want to discuss options with your Dr. and get a 2nd opinion. At worst, considering the reduction a "do-over" and extending by 4-5w may be the way to go. However it sounds as if you were und before w5. In that case your odds are so good that as log as you can keep up 80% or better adherence there's no reason to change anything.

It's not the sort of decision anyone will be able to give you a clear yes/no answer to, but the discussions may help make your  choices  clearer.

[AKHepper]

once again, ask about using neupogen to raise your neutrophils. Also, are you set up to try either of  the new drugs that just got approved?

[alico222]

I need to clarify. My treatment was reduced because she thought neutrophils too low and would keep dropping. but her mistakes was cutting by half i now realise..not experienced.
The night sweats occurred after..I pressume they are hep c related as didn't have them first 4 weeks.

[alico222]

for any clearance should i give up now and save my body or plough on and hope?

[alico222]

Yes I have asked for pcr its a bit of mess now and i am afraid I will have lost my chance.

[willing]

viral breakthrough during tx is a tiny jump in VL from (likely) present but UND to detectable. As Trish points out you won't find  a qualified Dr. anywhere on the planet who will attribute that small shift in VL to any physiological change(night sweats, increase decrease in AST/ALT, joint pain, etc.). However that small shift does have a major impact on your tx outcome. Successful tx depends on VL heading in one direction only: down, down, down.

I'd suggest forgetting the night sweats and focusing on understanding the reason for the dose reduction. A sensitive PCR may confirm breakthrough, but even an UND result doesn't mean your tx wasn't jeopardized by the reduction.  hcvjames may be a good contact as he underwent a couple of "restarts" on his last tx.

[AKHepper]

you need to ask them about neupogen

[alico222]

I think I need to clarify the night sweats were after I was reduced. The reduction but in one swoop was to 90 because neutrophils dropped to 0.5
Alico

[mikesimon]

I'd want a PCR if you can get one.
Is that possible?

Mike

[alico222]

is ther anywhere i can go for expert specialist advice as to what i should do now?

[AKHepper]

interferon reduction is no good, pretty sure that's why I relapsed back in 2004. They didn't know about rescue drugs back then, I guess. No excuse for it now.

[alico222]

i think paen has same instinct as me... what can i do now ?
I asked to go straight back up to full dose when i had asked around, so thats a jump back and had one sweat this week with increase.
have talked to consultant they are running scared and trying to do anything, its a terrible mistake, what can i do is there any point carrying on and putting my body under strain is this means the game is over.

Alico.

[nygirl7]

I haven't had them since treatment ended either.

I had to read the book somebody gifted me with it and I couldn't be rude to her now could I?   hahahahahahaha

[GSDgirl]

I also had night sweats prior to treatment.  Terrible drenching sweats.  Can't remember if I had them on TX but haven't had them since.

Denise

Deb, I KNEW you would read the book LOL

[Trish77]

"Occasionally there might be more to it than you're aware of. I don't really know all about this issue - unlike you apparently. Your certainty could lead someone to believe you actually know what you're talking about and that could be dangerous. For instance, when you start advising patients regarding treatment dosing. That's scary - for me anyway. "

I agree - there might occasionally be more to it than I'm aware of.  This is the first time I've ever heard a connection between night sweats and HCV.  I didn't advise her to stop treatment, nor did I advise her to proceed, nor did I post information on night sweats being a symptom of HCV implying a connection and leave it open to interpretation.  Her night sweats could be from any number of things.  Because she has HCV does not mean everything that happens to her will be HCV-related. I advised her to get a PCR as that being the only true measure of whether she's had a breakthrough or not.  I'm good with that advice.

I don't advise patients regarding dosing.  I state my opinion and what I would do like anybody else on this forum.  I tend to explain my opinion and what I base it on and I'm open to revising it based on information presented and responding to coherent challenges to the *information* presented with the goal of getting the information correct.  If you have issues with an opinion of mine on dosing, I'd suggest you say so on that particular thread where it's relevant and useful - particularly if you find it scary, rather than making vague innuendoes using someone else's thread on a completely unrelated topic.

[nygirl7]

Oh man I had the worse night sweats ever on treatment.  I would sit up and sweat would literally run down my body.  I would have to change tshirts and move to the other side of the bed then change the sheets in the morning. It got so bad I finally started sleeping on a towel which was easier to change then sheets.

I have never had night sweats in my life but definitely I had them constantly for 72 weeks on treatment and I have been SVR what 4 years now?

Heck Steven Tyler even talks about them in his autobiography (yes who didn't think I'd read it ;)

[mikesimon]

Maybe it's pure coincidence but after my second treatment when I cleared late I remember awakening with a night sweat. I hadn't had any sweats since I became undetectable which admittedly was late in treatment. When I woke with the seat I immediately worried about the virus. I was tested a week later and I had relapsed. During the next 8 weeks I had night sweats but a few weeks after staring my third treatment I stopped the sweating. I have never had another night sweat and that has been since 2004. Maybe it's just coincidental but I suspect that there is more to it.