TOPIC:

Gaj wrote: Hi Sven,

This is a cryogoblin.

SorrY, I'll let Fitz explain cryoglobulins and cryoglobulinemia.


PS per your edit, there can never be too many questions except when they are from a two year old after they kept you awake half the previous night.

Thanks! I'll remember that. Especially when I think I have asked too many question or I have included to much information.

Fitz wrote:

Just received my 6 week results by telephone. "Non-quantifiable <15"

Hi Fitz

Great results ... I bet that made you forget about your nose for the rest of the day ... until you brushed your teeth before bed that is.

You'll get another spring in your step when it comes in the mail and you see it printed on a piece of paper ... for some reason, I did anyway.

It makes my day when I see others get quick results from these demonised DAAs ...

Cheers

GT2

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:

Hi Fitz I am so happy that you tested negative for cryoglobulenmia! Perhpas it was positive at the beginning of your treatment but by the time you had the test done (6 weeks) they are already gone. Yay! Also great results for VL - non identifiable will lead to UND in two more weeks. So it seems you will do great with 12 weeks and won´t need to extend tx. By the way did you test for cholesterol Vit D and Vit B12? Three of the " markers" (aside from being cryo positive) that went out of normal range for me. My cholesterol for instance went from bellow 190 to 246 - 6 weeks after starting tx. Anyway wishing you that your journey continues being a success and that your sides are at bay! Thank you so much for explaining cryoglobulenmia in simple terms and posting the pictures. Great help.

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!

Hi Fitz,

don't be upset on your GI for not having written you the VL blood test.
In Romania I had to pay all my blood tests on my own. When going on the path with generics, everybody tells you it "is your own decision" (that includes also the risks and costs).
Because the VL blood test is so expensive, as far as I know my doctor would be held accountable if he would have written me a VL analysis. I posted in another thread here on this forum, that in Romania you need to get a kind of voucher to make such analysis and you are making it only if you are on the point to start the treatment. And as long as I was not F4, it does not make sense to "waste" a voucher on me..... There exist a kind of "money police" and if doctor does prescribe certain blood tests in a context outside the regulated one, the doctor will be ...... punished as he/she is wasting the taxpayer's money....

In a certain extent, I do understand the stupidity of the context: you get treated on your own money, get cured, save +100K $ from the national budget, yet the "System" tells you that as long as the treatment with generics is not approved by FDA / NHS / (or whatever other authority), you are not entitled to refund neither to be supported with blood analysis. So.... I think we all here are a kind of vikings....Brave and alone on our journey over the seas.

So cheer up and make your day beautiful,

Cheers,
RHF

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?!

Bring the surgery photos on Fitz!

Happy for you fitz. Alas, we are stuck with the HCV antibodies.
No bloods donors are we....
m

Diggers......

Meg wrote: Bring the surgery photos on Fitz!

OK - Here goes:


Normal spinal cord cross section ^



Severe stenosis ^



Total Hip Replacement (THR) incision^



Left hip (resurfaced) ^



Right hip (Total Hip Replacement)^

So - stuff that Hep C does to the body. If anyone reading this is still on the fence, my advice is: "Do not wait. Get treatment as soon as possible."

OUCH! Sorry you had to go through all those surgeries Fitz. Had no idea how serious it was. Thank you so much for sharing the images. Now I get it!! For sure it will help anyone on the fence to make the decision to treat Hep C asap.

Fitz ..... Wow! Those are brutal photos but you are well that is the BL. I guess I have been fortunate that the joints and bones have not taken a hit, I am very appreciative of that for sure. I have to give you credit for bravery. I am sure you have been through holy hell but I'm glad you're here and kicking butt and taking names. Those HCV little bastards are dying by the hundreds of thousands per day, march forward!
In good health my friend.

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.

I agree, very serious. I also agree that the DAA's, at this point at least, are frign incredible! I just can't believe how everything, as you said, is snapping back into place. My entire system at this time is so so different in an incredible way. Thanks man, you have opened a lot of eyes to what this disease does.
In good health

Hi Fitz,

...thank you for sharing it. It made me reflect again that HCV must be treated asap, no matter on which stage the liver is.

And, if allowed, another thought: I do not get the picture why people talk so often/much about the 500 000 people that die yearly because of HCV and neglect the rest of 150 000 000 infected people who might live a better life if they get treated sooner. It is not fair, because it creates the impression that HCV is in the end not such a big issue. My brain cannot imagine how big a crowd of 150 000 000 people look like...

Cheers
RHF