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Author Topic: Anyone with cryoglobulenemia? Does treatment cure it?  (Read 7180 times)

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Offline breezybev

  • Newbie
  • Posts: 1
Anyone with cryoglobulenemia? Does treatment cure it?
« on: December 14, 2015, 02:35:31 pm »
I've had problems with cryos since the 90s. My hepatologist said it had caused my Raynauds (cold and hot hands, feet and ears),  Sjogren's syndrome, chronic pain syndrome and other related problems. I've been wondering if Harvoni will cure these or at least make them better. They are considered "extra-hepatic manifestations" related to HCV. Thanks for any help with this.
I'm 66 yrs old. Approximate date got HCV: 1970, 3 Interferon-based treatments that never budged my VL, 3 liver biopsies over 10 yrs all showed bridging fibrosis stage 3, Fibroscan shows stage 2 fibrosis, cryoglobulinemia, bad osteoarthritis, Reynauds. Started Harvoni Nov. 10, 2015.

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Anyone with cryoglobulenemia? Does treatment cure it?
« Reply #1 on: December 16, 2015, 10:01:45 am »
One would think that ridding oneself of one of the known causes of the disease would help mitigate the amount of cryoglobulin antibodies.

It seems to depend on whether or not the disease itself is of type 2 and 3 which is known to  be associated with liver inflammation caused by chronic HCV in some people. This article has more details https://www.nlm.nih.gov/medlineplus/ency/article/000540.htm the complaint is not at all uncommon as HCV takes its toll on your metabolism over time.

There were a few individuals here who have the condition and there was a thread that covered this problem quite a while back but I cannot find it. But as more are cured I am sure we will get a better picture as to if the condition either goes away or is lessened over time.

All the best reaching SVR and cured
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Anyone with cryoglobulenemia? Does treatment cure it?
« Reply #2 on: December 16, 2015, 10:14:23 am »
Hi Breezy,

I've had problems with vasculitis and peripheral neuropathy most likely related to long-term HCV infection.  There is a lot of literature out there supporting a connection between cryoglobulinemia types 2 & 3 and HCV infection.

I can say with certainty that the numbness in my feet and toes has improved significantly since my treatment with Harvoni.  Not only has the peripheral neuropathy stopped progressing, which was a huge relief, but normal sensation is definitely returning.  :)  I think you'll be happily surprised as your treatment progresses!
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Anyone with cryoglobulenemia? Does treatment cure it?
« Reply #3 on: December 16, 2015, 03:49:57 pm »
Evidence shows that HCV-related cryo is likely to be cured when HCV is cured.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline JackN

  • Member
  • Posts: 52
Re: Anyone with cryoglobulenemia? Does treatment cure it?
« Reply #4 on: January 23, 2016, 12:45:38 pm »
Hi Breezy,

I have mild cryo w HCV also. Started treatment 12-5-15 and am currently on week 9. Last labs showed HCV down to 21 from 575,000 VL.  (Hoping to go UN soon)

Are you finished w treatment, and have you cleared the virus and the cryo? 
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Anyone with cryoglobulenemia? Does treatment cure it?
« Reply #5 on: January 26, 2016, 05:39:58 pm »
If you are on facebook, you can join a secret group there that shares Cryoglobulemia  experiences. Some from hepc including me. After curing the hepc the cryoglobulimia is still with me after a year. My neuropothy is still around, but not getting worse, perhaps a little better.


https://www.facebook.com/groups/allianceforcryoglobulinemia/

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Anyone with cryoglobulenemia? Does treatment cure it?
« Reply #6 on: January 27, 2016, 10:22:12 am »
Rainbowray - Have you read the follow-up studies on cryo to see how long it takes for cryo to improve after an SVR? I know it doesn't always completely improve, but I can't recall how long it takes. Some docs assume that when it doesn't improve, that means that the cryo might not have been caused by hep C. To that I'd day, "Are you kidding me? I believe many things we have might not be completely associated with hep C, but cryo seems so completely related that it would take quite a bit of misfortune to have the 2 conditions independently. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Anyone with cryoglobulenemia? Does treatment cure it?
« Reply #7 on: January 27, 2016, 11:49:56 am »
Accurate testing for mixed cryoglobulinemia (cryo types II and III) is hard to come by.  The test is very temperature-sensitive and often requires more than the 72 hour turnaround result  provided by Lab Corp.  False negatives are common.  OTOH, this protocol is very accurate for cryoglobulinemia type I.  Unlike types II and III, type I is not associated with HCV, but rather more serious conditions like multiple myeloma.

Until testing is improved, the correlation to HCV is going to remain vague and establishing causation, damn near impossible.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Anyone with cryoglobulenemia? Does treatment cure it?
« Reply #8 on: January 27, 2016, 12:12:34 pm »
Hi Lucinda,
I have decided to not seek treatment on this, not because I have concern or think it will heal, but Doctor's know way less on Cryoglobulimia than HepC. And we struggle with hepc and doctors. Seems Doctors believe it just goes away, but tell that to the many I have come in contact with. Maybe 1 in 10 go into complete remission after curing HepC. I know of one that the neuropothy left. My reumatologist says to wait if any damage from Cryoglobulimia begins to happen. My kidney doctor says the same. No Proactive intuition exists.
The known treatments are harsh. Reminds me of the early days of Hepc treatment.
Lucinda, you may want to check the Facebook secret cryoglobunimia page, perhaps join. Much knowledge can be shared. They are looking for Medical Professionals so they can see what Cryoglobunimia patients have to endure.
It is a great group with Hepc patients there with cryo, and non hepc patients.

 


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