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Hep C Discussion Forum -> General Discussion -> Got my meds (yay!) but hit a snag, possible cryoglobulinemia
Post Info TOPIC: Got my meds (yay!) but hit a snag, possible cryoglobulinemia
Juliet17


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Got my meds (yay!) but hit a snag, possible cryoglobulinemia
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You know, I have found dermatologists to be the most useless of specialists. People who know me on Facebook and such are familiar with my use of the word "dermatologist" to mean "complete idiot." Just for grins, I went to a new one recently. She accused me of "picking at pimples" and tried to prescribe a sedative! I'll try to post a photo so you can see the utter ridiculousness of that statement.

Might be a helpful thing to post anyway because this type of cutaneous issue is not uncommon with Hep C patients.

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HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.
Tig


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Sorry you're having the problems with your skin. That must be at the very least, uncomfortable. This disease can cause so many maladies, but you'll see big improvements once you get this treatment successfully behind you.

Can you get a referral to a dermatologist? That would be my first suggestion, as well as getting your treatment started. Seems like it's always something, but I'm confident you'll have much brighter days ahead! Don't get discouraged at any point, it will get better, promise... We're here for you and will join in that celebration day we know is ahead! smile



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Juliet17


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Still awaiting results! I called yesterday and a nurse said she cant discuss them but the doctor would be contacting me. Kinda disquieting. They need to work on their bedside manner imo. Anyway, the ulcers are mostly on my face, and they look like little moon craters. Not sure if I can post a photo, or whether I even should...it looks kinda scary. I joke that for Halloween I'll just put on a big ugly cape and go as a medieval plague victim!



-- Edited by Juliet17 on Friday 14th of October 2016 03:15:51 PM

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HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.
Tig


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Good article!

DAA regimen yields high SVR results in patients with Cryo.

Healio HCV Next 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Canuck


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Hey Juliet,

Any word back yet from the doc/labs for cryo?

Are your symptoms still the same right now?

Did he give you anything, at all, in the time being, like say for the skin ulcer issues? And, if you don't mind me asking you too much, where are the skin ulcers??

I can relate to all your symptoms, I have had trouble with some of those for years, pre-treatment and some post. I cannot say any of mine are cryo related though, and yours sounds very unpleasant indeed, arriving all at once like that.

The sicca syndrome "like" /dry eye thing - I have had for decades, lots of my symptoms I can now (in retrospect - as I was undiagnosed for so long), attribute to just having HCV for so long, general poor health, declining health, menopause/aging and just being plain unlucky. I did battle with some skin things too, irksome ear and facial abscesses near EOT and post-treatment, but knock on wood, I think I am through with them!!

I have tried to do a bit of of reading on cryo from time to time, and it is a gangly hard thing to comprehend. But I have read the same as you, that HCV treatment can help resolve it. There are specific/recent studies indicating incidences of resolutions of cryo symptoms post-HCV treatment, and, the earlier the HCV treatment in the early stages of cryo, the better the incidence of symptom resolution, so that was a good study.

I am sorry these things are plaguing you, I hope you are not feeling too bad, let us know how it's going. Sounds like you got a good doc looking out for you! I trust you will soon get your sof/dac start, and with it, the start in getting some of the relief you need and so deserve. It's nice you have that sof/dac bottle sitting, right beside you now - READY! smile C.



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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.

 

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Sydhanrahan


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Hi Juliet,

what a mixed bag of information. I really hope that the powers that be decide you should begin treatment sooner rather than later. The symptoms of cryoglobulinemia sound awful.

Our thoughts  are with you.

Syd



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Ruby Red


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Juliet, such good news about the meds whoohoo!

So sorry to hear about the snag, right when your at the starting gate but it will all straighten out and you'll be starting treatment. Oh and yes the fibroscan results, you can't ask for better!!

RR



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GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
Phoenix17


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I am so glad that you have your first month's supply! Sorry to hear about the complications though. I am sure it will all work out. At least you are all set to go when you get the green light!



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Canuck


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Good news, the sof/dac and the F0!! Cryo, well, we will just have to wait and see, I am so sorry for the recent symptoms you experienced. Good tho you and your docs are on it, and that you are getting good treatment. Won't be long now for your start I imagine. What exactly is your doc going to "sort" re: cryo that delays your sof/dac start? Nice you put the "little bird told me so", in the ears of political higher up's. You are your own best friend right now, concentrate on you.

You are doing an amazing job. Good for you. smileC.



-- Edited by Canuck on Friday 7th of October 2016 10:36:12 PM



-- Edited by Canuck on Friday 7th of October 2016 10:43:56 PM

__________________

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)
Pablito


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Great to hear about F0. I'd give anything to have a liver at F0.

Sorry to hear about the cyroglobulinaemia....had to look that one up and it took me 5 goes to spell it correctly, but it sounds painful.



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.
Cinnamon Girl


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Hi Juliet, well this is very mixed news and I`m really sorry you have something else to deal with now before you can begin your treatment, how very frustrating for you!  Sounds like you must be in a lot of pain and discomfort too...  hmm

Yes indeed, cryoglobulinemia is a condition which is strongly associated with Hep C and in fact is listed as an `extra hepatic manifestation`.  So that ultimately the best chance of clearing it is by treating the Hep C.  

Apart from that, what great news about your insurance cover and copay, how excellent!!  Also brilliant to know that your liver is in such good health, you`ve obviously been treating it very well!  And luckily your Hep C infection was detected before any damage could be done, which is great. 

Best of luck with the tests, do let us know when you hear the results, and let`s hope you`ll be able to start your treatment as soon as possible!

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Juliet17


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I hope I spelled it right!

The first of the good news is that I had my fibroscan, and I am at stage 0. Yay!

Next good news: I was approved for treatment and got my first month of Sovaldi/Daklinza. Because of my CIGNA coverage and the copay coupon my pharmacy arranged, here is the grand total of my out-of-pocket cost: $0.00!!!

I truly wish that my third piece of good news was that EVERYONE with Hep C was given the same deal. It is terrible that so many people suffering from this disease are denied treatment! I want to do something to help, and I have started with informing people of this situation, because a good number of the general public arent even aware. I made especially sure that two noisy family members with government connections in California knew about the Medi-Cal restrictions. They were shocked to learn about this, and I'm counting on them to make a big stink!

Anyway, I was ready to srart on my meds right away, but the malaise I'd been having previously took a turn for the worst, and I thought I'd better see the doctor first. I am currently awaiting the results of blood work, my doctor suspects cryoglobulinemia,  which often develops with Hep C. I have the strangest set of symptoms: unsightly skin ulcers, coughing spasms, painful parasthesia in both hands, very dry eyes, and aches and pains everywhere. My doctor agrees that I should delay treatment until we sort this out, although ultimately the treatment for cryoglobulinemia is getting rid of HCV. I suppose there are other complications to look out for.

So that's my status. I think the results will be in early next week.



__________________

HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.
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