Thanks Beaches, Gaj, Sven, Coral, Greedfighter, GT2!

One of the reasons I thought it important to go in for testing was to assess how well/quickly the DAAs were working, and to give my physicians the information they need in deciding whether or not treatment would have to be extended another 12 weeks, or something like ‘Riba’ (yuck!) added to get to the endgame – SVR.

At 8 weeks, I’ll test again to make sure everything is still heading in the right direction. If possible, I only want to do this once. If it becomes necessary, I will continue treatment for another 12 weeks. Rest assured, a team of wild horses couldn’t drag me away from, or take me off of a course of treatment that is actually working.

Sven, I think Gaj misunderstood and posted a picture of a “Cryo -Gobblin” rather than Cryoglobulins. Certainly a mistake anyone could make

Anyway – when we become ill enough with HCV, something goes haywire and our immune systems become sick too. One of the things that happens is that some of the proteins (immunoglobulins) which our immune system makes to keep disease in check get hijacked and compromised by the HCV disease process and form “Cryoglobulins”.

When our bodies, or parts of our bodies get below 98.6 degrees Fahrenheit, these rogue Cryoglobulins precipitate (cluster up) and clog up and inflame our blood vessels, causing Vasculitis (an inflammation of our circulatory system) – which in turn can show up as purple patches on our skin, pain or tingling in our extremities (neuropathy) and cause nerve and organ damage.

An example of this would be the purplish patches on the skin on my arms, and the purple red spots which appeared from above my ankles down to my toes, tingling in the tips of my fingers, and joint pain, all of which began to fade and disappear literally within days of starting treatment with generic DAA’s.

The pictures posted below are examples of the external symptoms of Cryoglubulinemia. My ‘spots’ are gone now, so these are photos I grabbed off the net.

Purple blobs are “Cryoglobulins”:

What Cryoglobulinemia can look like on our skin:

Thank you, Meg!

Yeah, I was honestly sweating the cryo test as much as the viral load. When I have more time I’ll post the X-Rays of the hip replacement/resurfacing, and the pre-operative MRI of severe spinal stenosis. Nothing quite drives the point home about the devastating effects of HCV more than joints that have been completely replaced, or images of a spinal cord and nerve roots being choked off by disease.

Fortunately, through the miracle of modern medicine and the skill of my excellent surgeons those conditions have been corrected. Last week, for the first time in at least a dozen years I went for a mountain hike. At nearly 10,000 feet above sea level, the air was a bit thin, but I went for a hike that would have been impossible just months ago, and had the energy to enjoy it.

Typical costs for hip replacement surgery is between US $30 and $60K. Stenosis surgery is similar, so you geniuses from Big Insurance, and the VA can tack on another another $90K to $180K to the potential cost of not treating. By the way, generics would save you another $60,000 – $70,000 or so per patient treated, so get out your calculators and get cracking you idiots, because that’s nearly a quarter of a million per patient treated you are just flushing down the toilet. 3.2 million HCV patients in the US alone that you are now obligated by law to treat, and you’re still playing Big Pharma’s game. No wonder you’re taking in more money than ever before, and still going broke.

BTW… a note to my GI Doc. I just saved tens of thousands for the insurance company that denied your request for Harvoni by paying for my generic DAA medication myself. What harm would it have done for you to order a VL test at 8 weeks?

Meg, vitamin level tests are not on the schedule for me, but I am supplementing with B12, E, and Iron. I don’t believe they did lipids last time, so they probably wont this time either. Will ask my GP to order those test as well around EOT.

Looking forward to your EOT results as well. Very excited for you Meg!

Yes, quite right Rohcvfighter. Other than not ordering the viral load test, and ‘offering’ to take me off treatment when I persisted, my GI doc has been stellar.

You make a good point about ultimately being left to our own resources with this. I like the Viking analogy as well.

Now, who wants to see surgery photos?!

Pretty serious….

We are taught to think of HCV as something that just affects the liver – but clearly, its effects are far more devastating than than just liver damage – which is terrible all by itself. In my case it has been literally killing me piece by piece.

I thought long and hard about posting this stuff because it is very personal to me. DAA treatment came along a bit late to save the natural joints I have lost, but now the tables have turned. With the help of these life saving generic DAAs, I am killing the disease rather than the other way around.