HCV Questions

[jonilynn]

I had a blood transfusion almost 20 years ago , and believe that is when I contracted HCV.
I was made aware that I had the disease when I gave blood years later (90

[Condewer]

Hi..I've Hep C genotype 3a  with extra-hepatic manifestation that is
Crioglobulinemic vasculitis ( Peripheral neuropathy).
I've done 6 months treatment with Pegasys+ Ribavirin and since the second month and stayed like that until the end of the treatment,with
a strong reduction of the vasculitis symptoms as well.
However, in a new exam  last month the virus was detected again and
since that the vasculitis starts all over my legs.

So,I would like to know what's the next step to try..

Also I would like to know if theres any good specialist in Miami

[GreatBird]

I think I recognize you from Hep Central (where I'm OWL).

You might open your own thread with this question, so you will get more responses. Right now it's buried under someone else's question. To start your own thread, just click on the green POST A QUESTION button at the top and ask your question there. Hopefully there will be someone (or many someones) who can answer you.

[sheann]

I happened upon this site searching for results of Rituxan for cryo+, I have HCV, geno 1b, older, too old for standard tx, age 73, have had the hep since 1981.  I was fine for years but tested positive for cryo+ from my first visit as my sx suggested I was positive.  I have angioedema, which is vasculitis in my mouth, ear ringing 24/7 and my quality of life is not great.  I am now taking 200 ribavarin, tried a higher dose, but my red blood cells tanked at 400 so now taking the 200 and 500 mg of Alinia, also an antiviral that seems to be helping some people, I do not feel any better for the most part. I also have hair loss, on legs as well as my head, my kidneys have been effected also, though with the new meds my creatinine went back to normal.  It is a very frightening disease and I feel so powerless.  I go to UM in Miami, and I have also undergone plasmapheresis which did work for a while, but it is a dangerous procedure and my doctor is trying to avoid doing it again.  It was just awful, having that catheter in my jugular vein for days on end, and the procedure itself was like being in a Frankenstein movie.  My liver is also now progressing much faster, I was Stage 0 for years, now Stage 2, or I was 2 years ago at my 4th bx.  

Best to all,
Sheila

[cactusrose]

I noticed that the date on your chat was awhile ago and so I don't even know if you look at this site anymore. I also have Hep C Associated Cryoglobulinemic Vasculitis. I produce way too much protein so it is doing some damage to my kidneys but I took 5 months tx of plasmaphersis and brought the numbers down significantly. Now I am getting ready to start Rituximab to see if we can get them all the way down to 100 as my permacath (sp?) got infected and had to be removed so the doctors decided to try the Rituximab now. I have been lucky I have had excellant physicians from my primary right down to my cardiac and that sure makes a difference. Anyway it is good to know someone else has this disease as only 5% of Hep patients are diagnoised with it, I feel better knowning that I'm not alone out here.
Linda

[[email protected]]

New to the form,was dig,in 1996,no support groups in city were I live,would like to speak to fellow hep c folks,guess they would know just how I feel,should I try the treatment?very scared, doctor  apt in few weeks.Thanks,Heather

[Micro2]

Warm that procrit in your hands first and insert the syringe a little more staight up. This advise has helped me. Also if possible find a spot that is nice and tender as opposed to those old hard favorites. I am using procrit now for the 3rd time. Good Luck!!

[cuteus]

I remember one time it did  not burn as much, i think it was in the fatty side of the thigh.  I wait for it to get to room temp.   what a nasty liquid compare to pegasys!  I will try the needle thing in the fatty side, :-}
TY

[cuteus]

Do you know what the Red Cross policy is now? Do they tell people to follow up with their dr? I'm curious.  
I can see how years ago someone could have thought they have antibodies as if they had measles or the pox. It  came and went and no more to worry about.

best of luck

[antz]

Believe it or not up until a year ago when all this began I had absolutely no signs of liver problems. The very first problem was the ascites. So I suppose that noone would have even thought to look there. When I got the signs it certainly appeared to be my lungs and not my liver that was a problem. The docs then looked into lung cancer, asbestos poisoning, etc etc. Thank God that my blood work did indeed show discrepancies in my blood. Years ago I donated blood and got a call from the Red Cross telling me I could not donate again as I had hep c antibodies. Well pardon my ignorance I thought that meant that once upon a time I had hep c and had recovered therefore the antibodies. The Red Cross never told me the severity of this or told me to see my doctor.   NOTHING. So I just continued on with my life while my liver got worse. It makes me very angry that they knew what it meant and neglected to inform me. Wonder where I would be now if I had seen a doctor then.

[cuteus]

wow! the  very best to you on your way to better health.  How did it get this far without any dr having the  insight to test for hcv?  A rheumatologist ordered mine, not my PCP,or the neurologist or orthopaedist...It took many years...TG I finally know and It is not severe.

I am angry and disturb that you had to go through so much while searching for a dx. It seems like such needless suffering...
It is the here and now you are focusing on, and it seems you now have the proper team to work with you.   Best health.

[honey1616]

Hey...I know you have had a lot of pain with that and I feel for you!! Its enough just dealing with the tx and then to have to through what you do....I know would be a very much daily challenge!  hmmmmm....have you heard of a surgery for neutropathy because it seems like I was talking to someone else in another forum that said there is a surjery for it but not sure if same kind that you are going through! I will see if I can find out more for you!

[tina b]

I have been wondering how you are doing. How did your doc visit go?

[scruffy]

Stop feeling ashamed and useless-you deserve a dang medal for all you've been through. I'd have rolled over and disappeared back at the lung biopsy.Stay Strong!

[twotells]

Thanks, sometimes I figure people that have been around here are sick of hearing my story on the cryo thing.  But, if even one person gets this addressed early, it's worth it.  From what I understand, it effects more women than men (9 to 1).  I now know that my thin and hairless calves resulted from this long before I knew I had HCV (which I've probably had for 35 yrs).  The occasional numbness and achyness in legs and feet were also related, although it had been attributed to sciatica from a slightly herniated lumbar disc for years.  Hope you don't have it, but if you do, there is more hope now than ever before.  God Bless,  Dave

[antz]

This whole business is still fairly new to me even though I was diagnosed approximentally a year ago. The first specialist I had was very doom and gloom telling me that I would not be able to have a transplant due to the fact that I was a diabetic. He didn't seem to know what to do with me, just kept saying that I was an odd case. For the first four months they couldn't determine what was wrong with me as I had liquid from my liver going up into my lungs giving me a false pneumonia. I had the liquid tapped twice and then a lung biopsy where the incision in my side kept draining so badly that I used a urine bag to cover the incision and drained it three to four times a day (the bag would be full). Finally the lung specialist put me in the hospital and said that I would stay there till they determined what was wrong with me. It was while there that my blood tests started to show problems with the liver not the lungs. Anyway they finally did a hep c test and found out what and where the problem lay. I had a liver biopsy and that showed that I was in stage four fibrosis which is cirhossis. Was put on interferon and ribetron and in only ten days my hemoglobin was so low (57--normals are 120) that I had to have two transfusions. I also had a scope in stomach to see if was bleeding in abdomen. That came out allright but my specialist finally offered to send me to a new specialist as he did not have a clue what to do with me. Was sent to a hepatologist who after a long talk and examination said that the only hope I had was a transplant (yes diabetics can have transplants) I recently sat with the transplant team who were wonderful but due to my diabetes have an infection in foot which they say must be dealt with first as anti-rejection drugs cause problems with infections and they can't even put me on the list until the infection is gone so much have surgery to cut out where the infection is. I have also been taken off my diuretics as my creatinine level which tests your kidneys have been out of whack. Normals are under 99 and mine are over 200. I have been off them for almost two months and he creatinine level has not dropped. In the beginning my stomach bloated out so that I looked 9 months pregnant. Could barely sit up without help but due to cutting back on salt has slowly been comming off me. The transplant team is concerned with this and want me to see a nephrologist as well to make sure that kidneys are not failing. I am never hungry as a matter of fact food makes me nauseaus at the very thought. Force myself to eat something as family so concerned. I throw up pretty regularly or have dry heaves. It has been basically a downhill battle. My daughters are devestated and very frightened by all of this as is my husband who has pretty much taken over everything. I feel like a burden and it makes me feel so ashamed when I am unable to help. This forum I just found and am so thrilled to be able to share feelings with others facing similar problems. Please anyone out there who can relate to all of this. Would love to hear back

[cuteus]

You were one of the first that got me thinking about the cryobulinemia, recently I realized it would explain a lot of pre tx symptoms even if it is not at the vascular level yet.   the more reason to get this bug out of my blood.   I recently asked my pcp for the test.  He was vocal about the fact that i did not go to the rheumatologist he suggested, who does complete work up. i told him that  he was not in my plan...
I guess I'll know the results in a week or so...Ty for re-stating this condition for the newbies who have not heard yet...

[twotells]

My experience may (or may not) be relevant to persons with HCV with severe joint pain and kidney problems.  After 2 mo and 5 specialists, I discovered the cause of my severe pain from lower back to feet which started soon after starting combo therapy for HCV.  It was cryoglobulinemic vasculitis, which effects 5% of persons with chronic HCV.  In my case it caused peripheral neuropathy.

Basically, it's an autoimmune problem related to HCV.  Some of the 'B' cells (lymphocytes in the blood which are part of the immune system) begin to make abnormal immunoproteins called cryoglobulins in response to HCV.  These proteins can cause problems with the blood vessels called vasculitis.  The cryo's are detected via a test called a cryocrit (which isn't routine for heppers even though HCV is the largest cause of this cryoglobulinemic vasculitis.

Most commonly, GI's consider the tx for cryo to consist of treating the HCV, but this dosn't work for everyone (may not even work for the majority of people with Cryo.  For a few people like myself, the HCV tx actually exacerbates the Cryo.  

The most typical outcome of Cryo is peripheral neuropathy: pain, weakness & numbness in the extremeties (arms/hands and legs/feet).  People with this experience paresthesias, weird sensations without any apparent cause like pain, burning, pricking, stabbing and numbness.  I felt like my feet were plugged into the electrical socket.  A less common outcome is kidney disease.

The newest treatment for cryo is a lymphoma drug called Rituxan (Rituximab) used pretty much only by Hematologists/Oncologists.  It is now starting to be used more widely for Rheumatoid Arthritis, Lupus, and other 'B' cell problems like Cryoglobulinemia (what I'm talking about).  

Because I was able to get Rituxan and because I'm stubborn, I was able to stay on combo therapy for HCV.  I'm now on a 48 wk extension of Pegasys.  My cryo has been only a trace since shortly after the Rituxan.  My painful nerve damage has improved but can take up to 2 yrs to heal, and I may be left with some permanent damage.

I hope neither of you have this, but it is worth getting checked.  The test for the cryoglobulins is called a cryocrit (mine was fairly high at >7).  The test for peripheral neuropathy should be done by a Neurologist and is called an EMG with nerve conduction studies.

I wish you the best,  Dave

[antz]

I am in stage four fibrosis or cirhossis and was put on interferon and rebitron in September. After less then two weeks my hemoglobin went down to 57. Normals are 120. I needed to be transfused and was immediately taken off the tx. The liver specialist told me that as soon as I felt well enough he would put me on the interferon again. I was horrified as it took me a long time to be able to even walk across the room without feeling as though I was going to pass out. I am also a diabetic and was dealing with an ulcer that was infected so was sent to the Head of Infection Control. He was the one who told me that under no circumstances was I to even consider taken this tx again. So much for my specialist. Since then have gotten a second opinion from a hepatoligist who has put me over to the transplant team. I need to deal with my infection before they will put me on the list and since seeing this new specialist have had to go off my diuretics due to high creatinine levels. Normals are under 99 and I am over 200. So of course my stomach got huge with ascites. I gave up salt and it has slowly gone down but my creatinine levels have not. Very nervous as transplant team has set me up with a nephrologist (still to see) and are talking about a possible kidney transplant down the line. This is terrifying to me and my family is terribly upset. They are all wonderful to me but scared to death about outcome. I want to know if anyone else is dealing with both their liver and kidneys plus diabetes and how they are coping.
thanks

[grouchyOldGuy]

Hi, wow, so you think the doc's nurse messed up your dosage! I'm not to hip on tx and dosage but If you posted specific's someone will know . Finding a good doc these days can be quite a chore, I have met some of the rudest illmannered doctors in my quest with this disease over the years. I was beginning to think all of them had lost touch with there hippocratic oath and replaced it with the hippo-crass-critical oath of monetary obsession! Recently I found a good doctor and things are looking up, but It did take some work...so hang in there...good luck

[layla]

I hit the jackpot on my third doc, a hepatologist I tried for the first time but there was a 5 month wait. Well, after 2 bad experiences I ended up there anyway. I do cummunicate most often with his support staff but they are pretty well trained. I hope you find a new good doc. The amount of tx is associated with SVC. I was on the wrong dose for the first month and did not clear at 12 weeks, now I am doing extended tx. I personally believe it was a factor for me. LL

[thanbey]

I doubt it very much.

Even those who have discontinued treatment early sometimes realize an SVR. You just never know. Since you did have an undetected test, that makes me think it is even less likely that the duration of treatment or the dose ultimately had any bearing on the end of treatment response.

Oddly enough, there are reports of people who went negative again beyond an end of treatment "detected" test after a response during treatment, so you may wish to consider another PCR in the next 6-12 months.

You never know!

thanbey

[cuteus]

wow, i got 3 post s with one click...if my paycheck would do that i would be so happy....
plus it posted the reply before i hit post...i  meant to add that Pegasys is easier to inject, I've never felt the med at all, but the Procrit burns as hell.  

Wrong dosage can affect the outcome of your tx.   I hope you find a better dr.  I'm on my third and my need to get a fourth.  
come back again and be well

[cuteus]

Many of us have encountered many imcompetent drs in various specialties, my first GI was non chalant about hcv in the absence of abnormal liver function.  that is all he needed to make his determination, no biopsy.  bottom line is WE have to take charge of our health with the dr as our monitor and advisor.

[cuteus]

Many of us have encountered many imcompetent drs in various specialties, my first GI was non chalant about hcv in the absence of abnormal liver function.  that is all he needed to make his determination, no biopsy.  bottom line is WE have to take charge of our health with the dr as our monitor and advisor.