TOPIC: SVR but still not feeling right?

There was a thread on here about a "rash" someone developed 6 months post treatment. I think this plays into this topic perfectly.

If you have stopped treatment for a few weeks, then my feeling is that what ever else happens is just another, unrelated problem. How can someone relate a "rash" to a drug they stopped 6 months ago? Shit happens people! End of story.

I'll tell you how.
I'm not relating the following to this rash case in particular, but here's what I've been looking at.

Let's take my own case. I know that I have a genetic predisposition to gluten intolerance / coeliac because I've had a genetic analysis. However until my mid 30's my body ran like a perfectly tuned machine. Everything worked to optimal. I could pull a 36 hour shift and go party afterwards. I could eat anything. Then something happened. I gained weight. I became sluggish. I started to have trouble with constipation. I started to have food intolerance symptoms, bloating, wind etc. I got tired easily. My best theory is that I picked up the virus around then.

However - and here's the point - these things have not gone away now that I have been UND for weeks. Now, as some posters suggest, they might still go away by themselves given time, and that would be my best case scenario. But I've been studying up on gluten sensitivity and apparently ONCE THE GENE IS TURNED ON you have it for life.

So why did the gene get turned on after 30+ years of it being blissfully dormant. Guess what. An acute or chronic viral infection can simply overload the immune system and tip it into attack mode. It starts to attack the virus and at the same time anything else it identifies as a foreign invader - in my case the gluten protein. After that, all kinds of autoimmune conditions can appear in any part of the body. Thyroid, fibromyalgia, adrenal stress, neuropathy, brain stuff, etc.

I'm not a doctor and I'm in the middle of research on all this so apologies if it is not more informative, but at the moment all I can do is point a finger for anybody who has developed autoimmune conditions. Obviously if you've had interferon then that would have exacerbated the situation. The message is that if your genetics have been altered by the hepC infection, if certain genes have been turned on, then you can't look to that reversing itself after SVR. This applies to any condition for which there is a genetic disposition, not just autoimmune conditions.

dt

Gaj said:

"Having said that I also believe we all need to be mindful of our health going forward and have follow ups as necessary taking into account our HCV medical history particularly if we had high fibrosis/cirrhosis. And if we have health issues that don't correlate with our peers in the general population then we should investigate those as and when they occur."

I think our expectations of a better life increase with the UND that comes so quickly on these drugs. Mine has too in many ways, but what the surgeon that chopped out segment 5 of my liver told me is that a HCC is like a carcinoma - cut one off your left arm and maybe you still get one on your right - it is just as sun damaged as the left.

I personally went into this DAA stuff for the following reasons:

a) I was getting high AFP levels indicating HCC or Chronic HCV. The specialist was sure the later, but acknowledged the previous time they were up, a dirty big HCC was inhabiting my liver. Now the AFP levels are down and while I have tests and a scan due ...., it still has reduced the worry.

b) I figured that my liver was damaged enough so I didn't want to wreck it more warehousing myself and hasten another HCC.

c) Maybe, possibly, having the bug piss off may let the liver fix itself and the right arm part no longer resemble the left arm.

So, what I have now halfway through 24 weeks is a lack of the previous fatigue (I am pretty sure of this) and a big hope that the DAA's have given me and family a better time till the next HCC if this is to be the outcome.

a., b., and c. still make sense to me and reading this thread I would openly say, that everyone is right. The only way I would feel 100% about HCV is if I had never had it. That I have means I take every positive change as a plus. For me, it is a good as it is ever going to get, and for that I am grateful (to the usual suspects and not Gilead Sciences).

Yours


J.

My broad reason for starting this thread has been this:

Up until today, the opportunities to study and collate a body of knowledge about post-SVR issues have been neglected. That's understandable. HepC specialists have had their hands full with firefighting active hepC infection. When people got to SVR who can blame them for considering that their job is done and they have plenty more infected queuing up to be taken care of.

So what has happened is that post-SVR people who still had issues went back to their GPs and were hived off to whichever other specialist was considered to be relevant to their particular post SVR issues. People got passed around to various specialists, especially if they had autoimmune conditions which are notoriously hard to diagnose. Many people got nowhere. The trend towards increasing specialization in medicine contributed to this situation. Nobody has been equipped to get the Big Picture.

I'd like to see this situation improve. Maybe there will be a chance for that in the future now that the DAAs have arrived and the pressure eases off to treat the infected, as and when that happens. There needs to be a knowledge base that post-SVR people and their doctors can tap into. It can be started now.

That's what I wished to draw attention to.
dt

Hi Dointime,

I agree whole heartedly with the thrust of what you are saying.

Twenty plus years of having my liver stuffed over is not something I expect any doctor or specialist to disregard. But in my case, the automatic fallback is a previous HCC and a hawkish G.P. I have been seeing for yonks sending me back to the specialist all the time.

I think in regard to building some body of knowledge around this subject, we may be at the pointy end of doing so.

As to the future, I am just relying on my belief that competent doctors will both take into account the (hopefully) previous HCV, but at the same time not attribute any and all symptoms to it. Guess that is why they go to uni a lot to be able to do that.


Yours

J.

dointime wrote:
Have u SVR24 John?