My 6 mo PCR was clear after a long (96wks) treatment and cautious wait. I got so much support and info from the good people at this site and I'm deeply grateful.
At times I felt crazy for stubbornly sticking to the effort because it was so difficult. I had a rare and dramatic worsening of the cryoglobulinemia and a very painful peripheral neuropathy then anemia and some depression. I was treated for these problems by a Neurologist, Hematologist, and a pain specialist in addition to my Hepatologist and Primary Doc. I even got a cancer drug called Rituxan for the cryo. I thank God for the good doctors.
I was type 1b, 2.7M copies, and age 53 with biopsy results of stage 3 at the outset of treatment and had a 2 log drop at 12 wks. Because my blood type is O Pos, I knew my chances of getting a liver (if I needed one) would likely involve a 5 yr wait, possibly longer than I would have. I didn't think I could wait on tx.
I want to thank all the great people on this forum who helped me so much. God bless you all, Dave
96 weeks! Yikes! I cna't even imagine as 71 weeks was so long for me. Those drugs really wreak havoc on you but I am so happy to hear about your 6 month SVR. Congrats! I hope you feel better every day. At 10 months I still have lingering problems but hopefully as time goes on they will resolve. Have you had another biopsy? I'm wondering if tx helped your liver condition. LL
Congradulations on SVR ( Survivor!) I am really happy to hear that tx worked for you amd that you are rid of the cryo, as well! Two birds with one stone. That's what I'm talking about. I pray you stay SVR forever Dave.
I am getting ready to do shot #14 tomorrow. I had a PCR at week 10 of tx, the labs messed up the test. So, I retook the test at week #12, still no results. Next week, I expect to hear I am undetectable.
As far as the cryo, my hemotologist will test me again at the 6 month mark. Right now, I know I still have it. As a matter of fact, I think it is spreading to my fingers & toes ( used to be just ankle joints & part of my legs )
I now have more joint pain & swelling in several of my fingers & one big toe. They are not sure if it's cryo related or that the tx caused some type of RA reaction. I will be seeing a Rheumy in June. Still fighting the good fight.
Stay well & Congradulations again. I am happy for you.
No, I don't need a liver- sorry about the confusion I caused. I understood from a news special on transplants that my blood type, O pos (universal donor), is in short supply because of what Tallblond said (can be used by all bloodtypes). Stage 3 is not the end, but this disease moves at different speeds for different people and even at different times for the same person. I wanted to stop HCV in its tracks, ASAP. I didn't want to find myself unable to treat later because of age or medical problems
I have some nerve damage from the ordeal, but I'm learning to deal with that- got out for a 10 mi bike ride today and planted some flowers. Life is good. I'm not doing the 40 mi rides anymore, but I'm able to do the things I love as long as I take it easy. I probably won't work at my career anymore, but disability gets me by and there's plenty of other things to do with my time. What happened to me with the cryo getting worse is a rare problem- it would have worsened anyway without treatment (just not as fast). Very few people have the cryo get worse after starting treatment, I was one of the very few. There are plenty of risks in tx. I'd do it again- I'm glad I decided to do it.
This forum and the special people I met here helped me more than I can say. I plan to stick around even if I don't post as much. God bless you, and hang in there, Dave
Congratulations on your good news! Your post stimulated a question though....Why do people with O+ blood have to wait longer than other blood types for an organ transplant? Is it because other blood types can accept organs with their own blood type AND 0+ (and thereby doubling their opportunity)? Just curious.
Layla, Like you, I have some continuing problems post tx. Let's hope they go away soon,
Lin, No special plans right now, but I'm working on it,
Susan, Yea, available blood and organs from O+ Bloodtype can be given to all bloodtypes so it results in a shortage for us folks with that bloodtype and I heard the wait was 5 yrs.
Sue, Hang in there SurVivoR. I saw the Rheumatologist who first diagnosed my HCV back in '02. He told me in '02 that he diagnosed 2-3 new cases of HCV in a year- now it's up to 15 cases a year. He said he see's alot of joint aches and pains and high rheumatoid factor in people with HCV. He also told me he has seen alot of people with the aches and pains lingering after tx (Layla, what do you think?) and called it Multiple Arthralgia and said it probably an autoimmune process from the disease or tx- he said it's definately not Arthritis although some doc's will call it that.
I didn't think to bring up the subject of another biopsy when I saw the GI. I think I was so overjoyed at the test results, I wasn't thinking right. I may call him about this. I'd like to know. I wouldn't be surprised if my liver did improve. In the absence of virus, I would hope for my liver to continue to improve. I hope you get some answers- I'm real curious about what you find out. I'm so glad you have SVR, I wish you the best, Dave
I had a lot of joint pain before tx and tested positive for RA but as you mentioned an RA doc told me it definately was not RA. He also said he saw that in other HCV patients. The pain did go away on tx but came back recently, perhaps a couple months ago which was about 7 months post tx. It seems to have stopped again but my hepatologist took a bunch of test and I will talk to him this week about the results. He did mention some autoimmune problems and reaction people have and that is what he tested for. The PCR just taken was undetectable so it's not the HCV. I seem to be prone to autoimmune type reactions for some reason. As you may know I also lost my thyroid on tx. All that said I continue to get better. I started running again last week and I am very happy about that! Would I do it over. No question, I would. Congrats again Dave!
Another question Dave. I know the liver has self healing power so now that you are SVR and the meds helped your liver will it continue to heal itself since it is not under attack any longer? LL
I think all us heppers have the joint pain. Most of us do test positive for RA and have some form of arthritis. Hopefully most of this will stuff will clear up when tx is over. But, only time will tell.
My joint pain however, comes along with broken blood vessels & deformities in the joints themselves. For several years my ankles have had major vessel damage. My hepatologist said that my left ankle is now deformed from the cryo ( not arthritis )
Just the past few weeks, the blood vessels in my fingers are starting to break down. I think that it's more than just arthritis because the circulation is impaired.
This virus sucks! I hope and pray that all of you who do the tx will recover without lasting side effects. We all know it is a gamble, but I believe it is worth it to be rid of the dragon.
hi two tells, i'm so glad to hear you're clear!!! that's just great news!!! what a huge relief for you...wow. i am just dreaming of the day!!!! have the best life ever and i'm so glad you'll be hanging around to encourage others too!!!
What wonderful news my friend! Anyone that does 96 weeks deserves SVR and so much more. You probably don't remember but last year we were all talking about planting trees and I can't remember now the circumstances,,,But I planted one for you,,,Twotells. You should see it now,,,,Its grown so much and blooms beautiful reddish flowers in the spring so see,,,,I'm not at all surprised to read your message! Now if only the cryo can improve somewhat,,,,you will have all of this behind you. Congratulations!!
Your news is wonderful, I couldn't be happier for you. I don't get to post too much these days, but I do check in from time to time to see how people are doing - to read that you are doing so well was well worth the visit:).
May continued good health be yours.
I definetely would trust a rheumatologist that tests for HCV in the absence of "classical symptoms" for RA. The first one I saw did not think I had a systemic condition to account for my aches and out of range R factor. The second one did not test me the first time I saw her, but a year later, she did. I guess she kept herself updated with seminars and journals and had the insight to test me. I wonder how many a year she diagnoses.
I hope the aches go away for good, but my fear is that hcv set in motion a set of reactions in the body that might not be reversible. I had to try. I AM GLAD I DID also. I have no lingering sides from tx, as far as I can tell.
life is GOOD!
Hi. Yes, my 2nd shot went even easier than my first. No headache, no chills, no NOTHING. I'm feeling just a bit too lucky, so I'm kinda holding my breath here. How about you Alan, did you get anywhere with all the red tape? Let me know!
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