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Hep C Discussion Forum -> New Members Area -> Cryoglobulinemia
Post Info TOPIC: Cryoglobulinemia
Loopy Lisa


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RE: Cryoglobulinemia
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Hi Bina,

I'm a 3b, and found treatment simple, I have to wait for results next month if I cleared. The big question is, which treatment to be precise?

There are a few possibilities now available for 3's. If that was such a risk, wouldn't there be a possibility of blood thinners to counter act the problem? I am not medically trained, so I have no clue what is good advice tbh.

After menopause Hep C speeds up its dirty work on females as our estrogen levels fall. That is one consideration to also take into account. As we age, our bodies cope less well with the infection and although not listed, a lot of people die from Hep C  related issues, but death is listed as the actual problem itself. So please think very carefully on this issue, and even see a specialist for a second opinion if you are not sure. 

I really can understand your worries. My step-mum had strokes giving birth to my youngest brother in her late 40's but she recovered fine, and she is OK.

Either way, I can imagine it really worries you, it seems like you need medical advice from someone that has treated other in your position.

Let us know what you decide.

 

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Canuck


Guru

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Posts: 3249
Date:
RE: Cyroglobulinemia
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Hi again Binalovina,

Thanks for filling us in, that helps.

I used to be a  GT3 as well (although I was an "a" and you are a "b"). I recently got myself all fixed up though by taking Epclusa (and another additional drug VOX) in a trial.

So, you have been a GT3b continuously (for about 40 years) and never been treated, correct? What tests have you had done and when to determine you have no cirrhosis? Did they assign you an F score indicating your level of fibrosis? Do you have any blood test results that you would feel comfortable in sharing such as your LFT's (liver function tests)?

Is your doc recommending you treat the HCV now, and you are afraid to, due to this concern about cryo and strokes, etc.? 

If they are pushing you to treat your HCV, then have they explained why they think you should, despite any concerns you may have expressed to them re: the cryo issue?

I can only guess they may be thinking you are in a far more precarious health position (knowing you have been carrying this untreated HCV for 40 years) given the damage it can do, and that it may be a low or unlikely event of a complicating issue occurring in regard to cryo. 

Is your thinking ... that because I have a "low viral load and no cirrhosis", that you do not need to treat your HCV?

If they are pushing you to treat your HCV, what drugs have they spoken of? We have a couple people here on the site, that come to mind, who are also GT 3b's, who have taken either sof/dac, and another took epclusa.

Many of us read and scour over these drugs when their trial data results are published and note the sides and adverse events. Adverse events with these new daa's are few. 

What GT's and drugs were involved in the cases of stroke you heard about?? I am curious. Were these cases indeed complicated by them clearly having cryo conditions?? Lots of people have strokes, especially us who are gettin' up there! And a lot of people also have unknowingly harboured undiagnosed HCV that has been harming them for many decades. Stands to reason a few, really unfortunate people, may just be afflicted with both at the same time, with cryo or without, and while on treatment or not. It might be very hard to say, what truly were the contributing factors, that caused strokes in these people.

I am no doctor!! But off the top of my head, not knowing any thing more, i would hazard a guess that you are at far greater health risk from having 40 years of untreated HCV, and that, may well outweigh the fear of a risk of stroke due to HCV treatment!

Do you have any BP issues? Are you on any meds? What kind of cardio-vascular shape are you in? I am just trying to see the basis of your concerns about risk in treatment.

Sorry, I am known to ask too many questions, and aren't I tirelessly long-winded!! I'm off to beddy- bye now. I'll enjoy hearing back from you some more. Nite, C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Binalovina


Member

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Posts: 7
Date:
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Thanks Canuk. I've had HCV for over 40 years diagnosed over 20 years ago. Recently diagnosed GenotType 3b. I have a big story as I guess most have. My levels are low and I have no cirrhosis. However I have had many symptons attributed to a number of issues which probably all point to HCV. Living hell in other words. But I have soldiered on. I want to get to the issue of cyroglobulinemia because in one of my researches in just a matter of a couple of hours I found 2 people who have strokes while on treatment and died and a friend of a friend also had a stroke while on treatment and is now in a nursing home. I'm wanting to get to the bottom of this. I'm wanting to find out if cyroglobulinemia played any part in these cases. As cyro causes blood to thicken or to gel I'm trying find out if the treatment can effect symptoms leading to strokes or any other deadly issues. I would appreciate any information from anyone. As a few of my family member s have met their demise through brain injury this is not in my plans.

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Canuck


Guru

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Posts: 3249
Date:
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Hi Binalovina,

Welcome here. I'm glad you are here trying to find some answers. Scattered throughout many threads here, are quite a few conversations about and info relating to extra-hepatic manifestations (such as cryoglobulinemia), not always easily found in quick manner for reading, but worth looking for. 

Here is just one from the "Knowledge" section of the forum. (link)  Extrahepatic Manifestations of HCV - scroll to bottom of this thread.

You will likely find other areas in the knowledge section that also speak to cryoglobulinemia. Try the search function too - enter extrahepatic manifestations or cryoglobulinemia.

I am assuming you have been diagnosed with having HCV? If so, do you know how long you have had it, and what genotype you are? Please do let us know a bit more. There are nice folk here, who will be glad to meet you, and will try to help in any way we can. smile C.

 

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Binalovina


Member

Status: Offline
Posts: 7
Date:
Cryoglobulinemia
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Hi. Im new in this forum. I searched cyroglobulinemia inthis fforum but it seems no one here knows anything about it or if they do they haven't mentioned it. If you are aware of it please let's chat. It is a blood issue that people with HCV may have but are not aware of it. People with no HCV have it also. Apparently it is rare and not much is known about it. I discovered it and informed my liver doctor who them took blood tests and confirmed it. Im concerned about having this problem and having treatment as well. I have been told the only cure fir Cyro is the treatment for. HCV but I'm not convinced . For several reasons which I'm trying to confirm. I'm trying to get to the bottom of this. Thanks for any in put.



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