Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
I'm Leo, many of the older ones (site-wise anyways) may remember me; IMK, ECC, Warriorgal (aka, Rass), Catmagic, Trissa, Havhope, Marilyn, Hank and many others.
Just to recap (and for those that are new):
-I got hcv from my mother's razor when I was 3yo, and I am almost 37
-My mother got it unknowingly from blood trans from my delivery
-Two other kids were born after and her 2-decade hubby, all negative
-She treated with monotherapy INF 3x a week in the mid-1990's (fail)
-I, and she, have Geno 1a, though I am tx-naive
-I was diagnosed in 2011; been seeing a disease, then hep doc since
-My blood work has slight elevation in ASTs, but imaging is fine
-I didn't start having any noticeable symptoms until 8yrs ago
-Both of us are on assistance, but I was denied Harvoni (she would be too)
-No other diseases, vac'd for hep A and B, flu shot every year for 3yrs
Now the big announcement and anxiousness:
I had been on a "trial list" for the last couple of years and I have finally been picked to try one.
INFO:
-phase 3
-sofo/velpatasvir/gs 9857 fixed for 8wks
OR (50/50 chance)
-sofo/velpatasvir fixed combo for 12wks
-common sides include, headache, nausea, fatigue
That's all I can think of now because of the hep-c-foggy-head, which I hope to clear up so I can think and remember stuff as I did prior to the onset of symptoms.
If others know how to get in touch with those I mentioned or others from the last couple of yrs, then please send them the news to come back and say Hi and offer insight. Thank you!
P.S. Within the last month or two, I have been experiencing joint pain in my right thumb. Used to be able to crack it, but now it won't do it. Bending it a certain way or bumping the side of it on, say, a table is terrible pain. Even pushing on it with another finger in that one spot hurts. About 2yrs ago, my left hip/leg connection started locking up & painful whenever I sit a certain angle for too long then get up to walk, or "hobble/limp" it out! Make it stop; cause this ride is way too long and physically depreciating by the day!!!
Love,
Leo =)
Just to recap (and for those that are new):
-I got hcv from my mother's razor when I was 3yo, and I am almost 37
-My mother got it unknowingly from blood trans from my delivery
-Two other kids were born after and her 2-decade hubby, all negative
-She treated with monotherapy INF 3x a week in the mid-1990's (fail)
-I, and she, have Geno 1a, though I am tx-naive
-I was diagnosed in 2011; been seeing a disease, then hep doc since
-My blood work has slight elevation in ASTs, but imaging is fine
-I didn't start having any noticeable symptoms until 8yrs ago
-Both of us are on assistance, but I was denied Harvoni (she would be too)
-No other diseases, vac'd for hep A and B, flu shot every year for 3yrs
Now the big announcement and anxiousness:
I had been on a "trial list" for the last couple of years and I have finally been picked to try one.
INFO:
-phase 3
-sofo/velpatasvir/gs 9857 fixed for 8wks
OR (50/50 chance)
-sofo/velpatasvir fixed combo for 12wks
-common sides include, headache, nausea, fatigue
That's all I can think of now because of the hep-c-foggy-head, which I hope to clear up so I can think and remember stuff as I did prior to the onset of symptoms.
If others know how to get in touch with those I mentioned or others from the last couple of yrs, then please send them the news to come back and say Hi and offer insight. Thank you!
P.S. Within the last month or two, I have been experiencing joint pain in my right thumb. Used to be able to crack it, but now it won't do it. Bending it a certain way or bumping the side of it on, say, a table is terrible pain. Even pushing on it with another finger in that one spot hurts. About 2yrs ago, my left hip/leg connection started locking up & painful whenever I sit a certain angle for too long then get up to walk, or "hobble/limp" it out! Make it stop; cause this ride is way too long and physically depreciating by the day!!!
Love,
Leo =)
This looks like a new drug they have out.
I did a trial in 2009. I would suggest, accept the opportunity. By the time they put you through all the screening, you could be eliminated but you' d have a pile of valuable test results.
If you pass, you can still decline if you wish.
Try to get statistics on existing results of these studies. Ask questions like is a blind or double blind study? Will they cover costs of unexpected labs & meds if needed & caused by the trial meds?
OK enough for now. How exciting! This could be your one free ticket.
The pain in your hip/leg sounds like Sciatic nerve pain. When our Sacram gets shifted off balance, yes indeed it is quite painful! I see a Chiro regularly who realigns my left side when it happens. I've used Obus Forme seats since 1991 cuz it's the only seat insert I've found that sits me on my "sitting bones" correctly & alleviates low back pain from herniations & compression I have dealt with since age 29.
I'm 61 now, and have had one base-thumb joint replacement done & need the right hand (dominate) done, but since Treatment, the pain is not as bad as it had been. But once the Cryoglobulins build up, what they do is to advance arthritis at an even faster rate. I've lost my arch tendon, had my big toe "base" joint cleaned out & repaired. Developed Neuromas in both feet since age 29, too.
All the best to you for your upcoming Treatment. I am 2b - the easiest to treat & clear, had it since I was either 19 or 26, and went through Sov/Riba Tx 12 wks this year and am cleared (SVR). The brain fog is mostly gone now, too, except for residuals due to age, stress & other medical conditions I have that contribute to that as well. I could almost feel the HepC leaving my body toward the end of treatment. The side effects are very manageable by drinking lots of water (not any kind of fluid will do; best to stick to clear water), eating healthy (no fast food), keeping up with stretching your body and walking (so important to do some form of exercise, esp. stretches, every day). Oh and stay OUT of the sun at all costs. I learned the hard way on that one. Got a "chicken skin" rash on my elbows at about the 5th week.
Anyway, again, wishing you all the best - and wow, what a powerful story of how you contracted it! I don't wanna say it is sad, because in the long run, you may not see it yet, but this will become a huge part of your healing and blessings in life as you continue becoming the beautiful woman you were born to be!
Forgive me, but I'm not sure I remember the name. Did you go by any other name?
Thank you for the return welcome and well wishes for, hopefully, a trial!
@Trissa
Gee, and here I thought you were one on the road to be cured even before my hiatus almost a year ago. Can gastro docs fix brain farts!!!??? I'm sure you've heard third time's a charm already, but for you it darn well should be!
I, too, will be having a Fibro Scan; next week in fact. Though the trial papers had that listed as a test they would do as well. Maybe they will just take the results of that one since it will be most likely recent enough for them.
I hope I get in. The results from this, what they are calling a pangenic tx, are 93% for Geno 1s (14/15). And those were people (tx naive) WITH cirrhosis! I don't have even significant fibrosis. I can ask about the add'l expenses should they arise. Even so, I will have my primary on board as well to help.
And it would be my free ticket, since gov't insurance does NOT cover, except, perhaps, those that are right before needing a transplant, of course.
Thank you, Trissa!
@Zennah
I remember seeing your name on here occasionally, and will be sure to look up cryo. My mom already has Raynaud's and peripheral neuropathy, in addition, she has genetic hemochromatosis. She has to take medicine for a heart attack from a few years back, like plavix, everyday.
I have seen chiro, but not in a year and no mention of sciatic, though he didn't take xrays, so that may have something to do with it. The only real relief I got from seeing the chiro was a manual traction move that was used for my back once. Felt like I had a new lower back!
Congrats on your SVR!
I have brain fog and I've never been on any tx!!! I refer to it as my daily dizziness, and random vertigo episodes on top of that as of 8 long yrs.I drink some water, but while people have to have their coffee I have to have my pop (Pepsi). But I will try to include more of the HO the treatment meds! Don't do outside stuff much anyways, am generally not full of much energy but I get basic things done, and I rarely eat fast food.
Thank you for the compliment and words of wisdom! There was some higher reason that I didn't get tested when my mom found out about hers (non of the household was tested), didn't meet the weight req for the Red Cross blood donation in high school (I really wanted to donate too), AND many years later the household DID get tested (all were clear) but I had just moved back in and didn't have any insurance... It wasn't til after I had my kid that I had symptoms (the 8yrs ago), went through many kinds of docs, and then 4 years after that even that I asked for the test in conjunction with my requested cholesterol test to see what was wrong with me. I was told, "Well, you won't die of heart of a heart attack, your cholesterol is great on both ldl and hdl, but you do have hepatitis..... I asked if it was a joke cause we had a kidding kind of banter. Then.....I lost it. I was so convinced there was no way I could have had it. I was born AFTER she got it. I was more worried for my siblings and stepdad, but they didn't contract it by some sheer luck. I was in the clear....
....But that force that stopped me from discovering it all those years, that blessed me to become pregnant with my child which led me to the accessibility of healthcare, that led me to taking charge of my diagnosis that doctors had missed (despite my listing my mother's health history on every questionnaire), that got me to specialists that knew of the current meds likely to be developed and warned me not to do triple tx due to the sides and horrible rash they were learning of, and of course that led me to this wonderful group here, and ultimately guided me to this trial above all the previous ones that were hosting patients to take one of the meds this trial is offering as part of an all-geno combo. I will not look this gift horse in the mouth. I will accept the challenge, and pay it forward for the rest of my life.
@havhope
I remember you cause your avatar has my avatar's weird in it too! Hope you are doing much better.
Doctor prescribed Harvoni for me but, being on state insurance, I was denied, as the doc predicted I would be. "It's so expensive that they will find any way not to pay for it. But, we are fighting for you, and you are still in our system for trials." Then almost a month later, the medical research, within her facility, came in the mail. It was on my mom's birthday no less, but I didn't announce as to not take her limelight. She was the first to know though, just as with the initial positive test results nearly 5yrs ago.
Correction:
Your avatar has the WORD that's in my avatar in it lol! Weird....(yep. I just went there).
Prayers!
Bill
Glad to see you are so here and active!
I am currently in "sponsor-based pretrial screening" as she stated to me. Out of the 8 she submitted, 4 have been approved for screening, or the first day/physical of the trial is how I took it, and I am one of the 4 that is still waiting approval to be considered. Only 15 total are to be in this study as it is. Hope I am in the next running cause state ins denied paying for Harvoni.
I will be keeping you in prayer to get the tx and kill the virus!
Bill
The median Liver Stiffness Score was 4.9 kilopascal
(kPa), ranging from a low of 4.0 kPa to a high of 6.0 kPa. The
Interquartile Range to Median ratio for all measurements was 16%.
Interpretation: Taking into account the patients history and
recent blood tests, this Liver Stiffness Score for this patient
with a diagnosis of hepatitis C is consistent with
? Probable Non-fibrotic liver to mildly fibrotic liver (F0-F1)
While I am definitely relieved, no doubt about that, I am so tired of being tired and having this foggy head, visual "fuzz", vertigo & dizziness (like walking around feeling like my head is floating behind me, trying to catch up), and all of this since 8 long yrs ago.
I am still awaiting "the call " for the trial screening. It is for Sofosbuvir, velpatasvir, and gs 9857 as an all oral pan-genotypic tx.
Guess I'm getting stressed cause I keep catching myself clenching my jaw and my head has had a pressure and throbbing for 3 days, no pain though. But, it did make my foggy head/dizziness worse lol.