Hep C and Cryoglobulinemia

[b1a2m3]

Have any of you Hep C sufferers been diagnosed with Cryoglobulinemia?

[Severance]

I've been looking at this too. Congregations of Hep C cells form cold patches in the blood. I wondered if it was the cause of my last blood tests coming out stuck to the vial and thick. It's certainly a more sensible explanation for aches and pains that seem to be exaggerated by the cold. I noticed after my last bout of illness that there was a whole new patch of veins standing out on my ribcage. Way more than the occasional 'spidering' I'm used to seeing. I stumbled across the cryo globulin info while looking for a cause for the searing upper abdominal pain I've been experiencing. My G.P wants me to go through gall bladder and pancreatic tests. Our local hospital has two super bugs in residence so I'm reluctant to test when I feel there's small likely hood of a resulting diagnoses.

[Myown]

Nah I wouldn't get mad. Doctors need to get on the ball as far as the immune system and hopefully those on the forum start studying the immune system as hard as they have studied the virus, meds cause there are alot of smart people here that can grasp this stuff alot better than me. The immune system holds the key, which most would agree at this point, but we can't wait until the doctors look into it more, cause it just isn't happening right now.

MO

[ladywhy]

..aint' that the truth!!! That book needs to be written. Isn't it 'amazing' that so many symptons we have...the hep doctors say that it has nothing to do with hepc??? If you don't ask the right questions...and be proactive particularly with this disease....it seems to me, you may be 'outta luck'. It's because so many are in the dark and are just NOT connecting the dots. A year ago on this forum...I wasn't thinkin' humm, why the 50/50% chance or why the relapse of so many here...then MO (after lengthy ongoing reading up and researching) starts talking about our immune systems....and/ or compromised immune systems and I'm thinkin'...this makes sense!! She's has loads of info...I can't even articulate. The neurologists, the rheumatologists and the hepatologists need to get together!!! Alot more going on than liver disease....hah...it is rather scary.
On that note...I am beyond exhausted...so
good night and I fully agree there is definately a 'new' book needed to be written...go for it!
y
110 weeks...I hear you...3rd tx for me...so i'm around there meself.

ps: I heard that 50 % of HepCers have cryo....and 50% 1's fail tx....is there maybe a correlation?? Why did I have to ask for this test??? There's no doubt that this tx and disease can send us 'round the bend......
(again...not my hypothetical possible opinion...but i must give credit where credit is due...Myown.
I hope she's not gonna be mad at me for bringing her name into this (I'll blame exhaustion and drugs) but she's not afriad to ASK the hard questions and then start diggin' I thank God for this forum and for so many people for sharing their knowledge and are so aware of what's happnin' othewise I'd be alone and clueless.
So I thank everybody...
For real...I'm going to bed.

[ladywhy]

I am going for testing on Friday....I think.  I am going to call Quest and have this screen up tomorrow and talk to my favorite 'blood sucker' (j/k) there. I really believe she will tell me if this can be done properly...otherwise I'm not gonna waste my time...and I am going to e-mail NP that blurb you directed me to. Thanks for your unending research....at this point, (other  than here) I'm only reading comic strips......j/k kinda'
Thanks again.
y

[SJL]

I forgot to mention that I have been off of interferons for almost 2 yrs.I am a 1B, grade 3, stage 4 with fibrosis, and I am 64( I believe that is 54 now, isin't it!)I never did drugs, etc., and I have carried this disease for over 30 yrs.But as I said, who cares how we acquired it, we must work to get rid of it!!
SJL

[SJL]

Yes~Yes~Yes. With me the cryo came after the interferon treatments(all 3 types),and I am now taking Rituxin therapy for the cryo.I treated with interferons for 110 wks. all together.

On the second round Infergen & Riba, I had 6 straight undetectables and then relapsed. I also developed Peripheal Neuropathy, which is causing a huge problem now. My feet, legs and right hand go numb constantly. I have fallen 16 times throughout a 2 yr. period, as a result of the Neuropathy. I call these "tag along diseases," as a result of the Hep C. Their is no Doctor who will admit this, but it seems to be funny that none of this was around before I treated?

I am truly in the aching period now. Advil doesn't touch it, so I am on pain meds. I also have insomnia and sleep maybe 5 hrs., on a good nite. I am contemplating writing a book and being honest regarding all of the various side affects that can accompany Hep C. I am sure that none of us knew the truth before we started treatment, as we are all used to reading the typical med sheets which are included in all meds, saying the exact same thing. I realize that Hep C affects everyone differently, but it has taken away 5 yrs. of my life and is continuing onward. I have the very best Hepatologists, Neurologists, Orthopedist, Rheumatologists,Physical Therapist, Oncologist at Shands University Hospital, and I have tried various other things. I am now looking into infra-red therapy.The only thing we haven't done at Shands is Plasmapheresis. I have another appt. on 4/16 for Rituxin and at this point I will ask about that procedure. I also see a Hepatitus Specialist outside of Shands. At this point I have been told to try anything as nothing will hurt me, except interferons.

At times I wish that I had never started any therapy, but I feel that God is watching over and has another plan for me. My career in Philanthropy helped to raise 5M dollars in a little over 5 yrs.for Women's Breast Cancer. With the book that I am contemplating writing all I want to do is bring awareness to the disease,helping people to acknowledge it and not feel inferior as a result. I cringe everytime someone writes "should I tell."

Their is nothing to feel ashamed of as Hep C can be acquired in many ways, even in the hospital. Their is a need out there for complete open and honest information as to the do's and dont's, ups and downs of a disease that ultimately no Doctor knows how to treat, as it is just now being brought to the front and not enough research is documented as to the history and treatment.

Everybody reacts differently.I am ready to stir things up a little, but I really am not sure of where to start? Any Suggestions? My wish for you is SVR. Don't give up, but let's all fight and bring this disease to the forefront and push the Pharmaceutical Companies harder to find that magical drug that will put an end to all the pain & suffering that Hepatitus has brought us.
SJL

[Myown]

The test is a very senstive test and MUST be done at an "on-site lab." You must make sure they Pre-warm the vial, have an incubator or warm bath to put the vial in immediately upon drawing the blood. I have had the test on numerous occasions only to find myself stressed out and telling people they are doing the test wrong. I don't believe I have a "bad case" of it yet, but it is there. The doctors seem to only think you have it if you have sores on your legs or hugh purple marks - or bleeds under the skin. I have tiny bleeds, I get swollen ankes, cold hands, feet, numbness etc..... So I finally came to the conclusion that I would have to take it upon myself to go to a Neurologist and the Neurologist suggested and EMG test to see if I have Peripheral Neuropathy. The test did prove I have PN. My point was not to "be right" for the sake of being right, but my point was/is is that according to studies people with Cryo can have a poor response to TX and for that reason, last year, my first tx, IF they would have acknowledged I had Cryo, they may have wanted to treat me longer, IF thats what they do when people have CRYO. 50% of HCV infected people have cryo, so IMO, a person that is a geno 1, (with cryo) maybe should tx an automatic 72 weeks for FIRST tx and a person that is geno 2,3, maybe should tx 48 weeks first round. This is just an opinion of mine, not saying this is fact, just my opinion. But anyhow, most people don't get the cryo test UNLESS their doctor sees "major" manifestation of CRYO and the point I tried to make to all my doctors is that, IMO not everything starts out with a big bang with major manifestation and that is sometimes true with all disease,,, and my little bleeds - okay they are tiny, but a bleed is a bleed - is a bleed - period,,and it shouldn't be happening. So anyway my doc even now agrees that it looks like I have it, now that he has seen the report from the Neurologist. I just get so tired of jumping up and down trying to get doctors to believe me about things such as this..I know my body - most people know when something is not right about their body and I can't stand that I have to do a song and a dance to get them to listen to me.

So anyhow if you can't get a cryo test done correctly, maybe you should do what I did and go get a EMG at a Neurologist and that will show if you have PN, which might mean you have Cryo.

Ps, I also get swelling in my ankles and legs especially if I sit too long. Its not that others can notice, but I can feel it and when the doctor presses on my legs he can see it too.

For some reason it is so much better than last year though - maybe tx helped with that - dunno.

[Rosebud41]

Thanks for the information.
I will ask my rheumotologist and hemotologist about it today.
After looking up the symptoms I certainly might have it.

Anyone who suffers with leg pain especially in cold weather should look up the symptoms of Cryoglobulinemia. Also if your pain responds to sitting in a warm bathtub you should investigate.

Again, thanks so much for the informtion.

Rosebud