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  • Cryoglobulinemia assoc. with 1b....want to hear from others with same

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    Old 09-30-2006, 08:53 PM   #1
    MKMMJ
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    Cryoglobulinemia assoc. with 1b....want to hear from others with same

    I was dx with rheumatoid arthritis 10 yrs ago. Same time was dx with hep c, but didn't find out till 2 yrs ago via additional testing I was geno 1b, had a bx, and drs started discussing hep C tx. It took some figuring out by my GE, Rheum, and me that I had developed an offshot dx of cryoglobulinemia. I am symptomatic with it (<1% of people are).....the arthritis, leg rash, and my dr. is holding off (thank you Lord) for the time being on a bone marrow bx to rule out lymphoma which occurs in 20-40% of people with cryo.
    I'd like to hear from anyone who has similar problems associated with their hep C. Thanks, Michelle

     
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    Old 10-04-2006, 06:05 AM   #2
    Charmed.1
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    Re: Cryoglobulinemia assoc. with 1b....want to hear from others with same

    Quote:
    Originally Posted by MKMMJ
    I was dx with rheumatoid arthritis 10 yrs ago. Same time was dx with hep c, but didn't find out till 2 yrs ago via additional testing I was geno 1b, had a bx, and drs started discussing hep C tx. It took some figuring out by my GE, Rheum, and me that I had developed an offshot dx of cryoglobulinemia. I am symptomatic with it (<1% of people are).....the arthritis, leg rash, and my dr. is holding off (thank you Lord) for the time being on a bone marrow bx to rule out lymphoma which occurs in 20-40% of people with cryo.
    I'd like to hear from anyone who has similar problems associated with their hep C. Thanks, Michelle

    I'm glad that you asked this question. I was diagnosed with RA last year and another blood test showed positive this past summer. I went to see a specialist and he spent his time with me scratching his head. We did several xrays and then blood work. He is the one who called me with the news that I was HCV positive. At this point I don't know alot. I'm not even sure if I have RA. Can HCV mask itself as other autoimmune problems? How do I find out? Lisa

     
    Old 10-04-2006, 10:55 AM   #3
    MKMMJ
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    Re: Cryoglobulinemia assoc. with 1b....want to hear from others with same

    Dear Lisa, I can try to answer some of what you ask, but I, myself am still learning and gathering info on cryoglobulinemia as an offshoot of hep C. I've have what they term mixed essential cryo and I am symptomatic....that's a big part of why I chose to start tx for hep C. (I still have questions in my mind as to whether it's the right thing to do...it's like chemo....it might target the disease, but also destroy a lot of other healthy cells and cause severe problems elsewhere).
    I was tested several times for RA and always positive to some degree, but the Rheum kept telling me that she was sure it wasn't truly RA.....oh, I had the increasing debilitating aches and pains and decreased mobility of arthritis, but not the nodule and joint changes ones sees with RA.
    Long story short (well, that's a lie)...she tested me for cryoglobulins which showed positive and wanted me to make sure my GE knew. He retested me, but explained it's a very difficult test to get results for simply because of the stringent lab settings that have to be maintained when testing is done. Often they have to be be repeated several times.
    Anyway, one can have a false positive to RA with hep C, one may also have arthritis with hep C secondary to cryo. I was even told for the longest time that all my aches and pains were associated with my high viral load.
    It can get very complicated. The best thing you can do for yourself is to read and gather as much info as you can and ask as many questions as you can. I generally take a note pad to any and all my doctors. I live on the net (do take a break from it once in a while....it'll drive you nuts). Arm yourself with all the info you can gather. See a good herbalist/nutrutionist too.Best of luck on your health and info journey. Keep sharing all of your info. Michelle

     
    Old 10-07-2006, 07:03 AM   #4
    Charmed.1
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    Smile Re: Cryoglobulinemia assoc. with 1b....want to hear from others with same

    Quote:
    Originally Posted by MKMMJ
    Dear Lisa, I can try to answer some of what you ask, but I, myself am still learning and gathering info on cryoglobulinemia as an offshoot of hep C. I've have what they term mixed essential cryo and I am symptomatic....that's a big part of why I chose to start tx for hep C. (I still have questions in my mind as to whether it's the right thing to do...it's like chemo....it might target the disease, but also destroy a lot of other healthy cells and cause severe problems elsewhere).
    I was tested several times for RA and always positive to some degree, but the Rheum kept telling me that she was sure it wasn't truly RA.....oh, I had the increasing debilitating aches and pains and decreased mobility of arthritis, but not the nodule and joint changes ones sees with RA.
    Long story short (well, that's a lie)...she tested me for cryoglobulins which showed positive and wanted me to make sure my GE knew. He retested me, but explained it's a very difficult test to get results for simply because of the stringent lab settings that have to be maintained when testing is done. Often they have to be be repeated several times.
    Anyway, one can have a false positive to RA with hep C, one may also have arthritis with hep C secondary to cryo. I was even told for the longest time that all my aches and pains were associated with my high viral load.
    It can get very complicated. The best thing you can do for yourself is to read and gather as much info as you can and ask as many questions as you can. I generally take a note pad to any and all my doctors. I live on the net (do take a break from it once in a while....it'll drive you nuts). Arm yourself with all the info you can gather. See a good herbalist/nutrutionist too.Best of luck on your health and info journey. Keep sharing all of your info. Michelle
    The aches, pains and swelling, etc... that is the reason that I started going to all the doctors. I was trying to find out why. I knew that RA was in my family so I never questioned the fact when they told me that I was positive. I had never heard of Raynaud's Phenomenon which I also have. Have you ever heard of that? They diagnosed me with Psoriasis. I've had 1 really bad outbreak of that. I stayed in the tanning bed (actually prescribed) and the sunshine and chased it away. I haven't seen it since. That was 5 years ago. They did a biopsy so the diagnosis was good. My GE did some sort of "cryo" test on my last visit. I go back to see him on Tuesday and will learn the results. Btw, since I read about the milk thistle I have been taking this twice a day. My hair and nails have started growing again. That is so amazing to me. I would recommend that to anyone with HCV. It really works! I know that I'm rambling. I don't feel well today. I have been feeling a lot better but this morning I feel like a truck hit me. I don't know why, therefore, I don't know how to fix it. No energy so on on on on and on. Anyway thank you for the chat. It's very comforting to know that I'm not alone.

     
    Old 10-08-2006, 02:59 PM   #5
    gosgirl
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    Re: Cryoglobulinemia assoc. with 1b....want to hear from others with same

    Hello MKMMJ,
    I too went through something similar to what you are experiencing now. I was dx with RA 16 years. My doctor at the time said my R-factor was 138. I have been agressively treated with a whole range of drugs staring with gold injections; one year later, oral methotrexate; a couple of years later, I started injectable metho. I was geting NO relief. I then added Humera, nothing, after three years; then embrel for several years then I finally changed to Remicade infusions. I tryed EVERY anti-inflamitories(sp?); they had NO effect. I went from dr to dr trying to find out WHAT WAS HAPPENING TO ME. Then last year, went I choose another dr, a GP, he dx me with
    HCV 1a. I could not believe it! Finally an answer. I continued with the metho and remicade. I needed x-rays of my hands for disability and the x-ray tech, who was a friend of mine, told me that the joints in my hands were perfect. There was something wrong with this picture. So I reserched online and discovered that HCV can mimic RA right down to the r-factor test. I told my hepatologist about this and he confirmed that I most likely DID NOT have RA, but that my high R-factor was very high because of the cryoglobulinemia. I stopped all Arthritis treatment and feel a little better for it. You need to see a hepatologest that you can talk to about your extrahepatic manfestations. Most Hep doctors ONLY will talk to you about treatment, so careful who you choose. There is new information everyday about HCV and I am sure if you really search you will find the information to give you peace of mind.
    Good Luck,
    gosgirl

    Last edited by moderator2; 10-08-2006 at 03:19 PM. Reason: posted commercial website

     
    Old 10-09-2006, 04:15 PM   #6
    MKMMJ
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    Re: Cryoglobulinemia assoc. with 1b....want to hear from others with same

    Quote:
    Originally Posted by gosgirl
    Hello MKMMJ,
    I too went through something similar to what you are experiencing now. I was dx with RA 16 years. My doctor at the time said my R-factor was 138. I have been agressively treated with a whole range of drugs staring with gold injections; one year later, oral methotrexate; a couple of years later, I started injectable metho. I was geting NO relief. I then added Humera, nothing, after three years; then embrel for several years then I finally changed to Remicade infusions. I tryed EVERY anti-inflamitories(sp?); they had NO effect. I went from dr to dr trying to find out WHAT WAS HAPPENING TO ME. Then last year, went I choose another dr, a GP, he dx me with
    HCV 1a. I could not believe it! Finally an answer. I continued with the metho and remicade. I needed x-rays of my hands for disability and the x-ray tech, who was a friend of mine, told me that the joints in my hands were perfect. There was something wrong with this picture. So I reserched online and discovered that HCV can mimic RA right down to the r-factor test. I told my hepatologist about this and he confirmed that I most likely DID NOT have RA, but that my high R-factor was very high because of the cryoglobulinemia. I stopped all Arthritis treatment and feel a little better for it. You need to see a hepatologest that you can talk to about your extrahepatic manfestations. Most Hep doctors ONLY will talk to you about treatment, so careful who you choose. There is new information everyday about HCV and I am sure if you really search you will find the information to give you peace of mind.
    Good Luck,
    gosgirl
    Hi Gosgirl.....so glad to hear from you as well as others. There's strength in numbers, not to mention all kinds of diffrenet info out there.
    I started out by seeing a local GE in my community...one that I really do like and feel that he has a good knowledge base and years of experience. He wasn't the 1st GE that I saw. I also have been seeing a Rheum at USF...I always prefer a teaching facility just because of the "state of the art" medicine and research that they have at hand. For my second opnion for the liver, I did see a hepatologist through the USF referral system that is on board at Life Links...an organ transplant facility here in West Central Fl. Everyone (my local docs) said that he wouldn't see me simply because my case wasn't important enough (I wasn't sick enough), but he did see me and confirmed everything that my GE had planned in regards to present treatment. He talked to me at length about the cryoglobulinemia and though he tried to reassure me that possibly through Peg & Rib. tx there may be a good possibility that it may resolve the arthritis thing I have going on, but didn't want to give me false hopes, but tried to keep me positive and pointed in the right direction. I appreciate honesty in doctors. So many of them are just practicing mills and seem to have lost their true philosophy and reason for why they ever decided on going into medicine.
    At least I have a good Rheum. She never wanted to put me on anything other than Nsaids for my inflamation since she really was not convinced that I truly had RA....good hx & physical, xrays, did oodles of lab. Unfortunately though, I ate ibuprofen for 10 years (600-800mg/day) and now have paid the price for that....an intestinal tract full of ulcers....great drug though for controlling pain and inflamation. That by the way was the only drug that gave me any relief....no other anti-inflamatories did, no pain meds on a minor scale, and I definetely refused any of the opiates. Didn't want to invite more trouble than I already had.
    Anyway, enough rambling....I appreciate your advice. That's what participating in this thread is all about. Support and info sharing.
    I'm so glad you're not taking all those rheum drugs....my God what a story you have. I hope you get a handle on all this. Your Hep 1a has much higher odds on achieving a SVR if in fact you choose to tx (I didn't get if you are or not).
    Keep in touch. I share my hope for you as well as all of us that are burdened with this. I'm a die hard optimist. Michelle

    Last edited by MKMMJ; 10-09-2006 at 04:19 PM.

     
    Old 10-10-2006, 01:03 PM   #7
    DLMD
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    Re: Cryoglobulinemia assoc. with 1b....want to hear from others with same

    I have has a cryoglobulinemia test done twice & have NO faith in the results of either of the tests. You need to read up on how this test is to be done & handled. Just do a search on the test procedures. It even says to have the test done where the blood is drawn.
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    Old 10-10-2006, 10:12 PM   #8
    MKMMJ
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    Re: Cryoglobulinemia assoc. with 1b....want to hear from others with same

    I'm still learning all I can about the condition and testing. I've had the test (serum cryoglobulins) and numerous others done by my Rheum...it came back positive. My GE again tested me - different lab , but as one can read....it is very difficult to get a truly consistent reading due to the difficulty and preciseness of lab testing conditions and the quality and experience of the lab. I've heard of some patients being tested repeatedly before getting positive results (not that anyone wants to be positive), but unfortunately, I present with some pretty classic symptomatology. That was one of the big reasons that I opted for the tx of hep c. Onward for the cure! Michelle

    Last edited by MKMMJ; 10-10-2006 at 10:15 PM.

     
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