Chest and Back Pain caused by HEP C

[Jim]

Just joined today.  I m lucky to say day 17 on Olysio and Sovaldi.  I was one of the unlucky trial patients of the 2000-2001 Peg interferon treatments.  So for those of you that went through that treatment this one is like going to Disney Land with a pocket full off money.  But this is what I really need your help with.  I have had a pain in both my chest and my back ( right side ) for quite a long time ( 4 or 5 years ) to the point at night I have trouble sleeping. How many of you have similar pains?  I'm a stage 2 stage 4 and figure I was infected by air guns used to give us shots when I was drafted into the Army in 1970. So yes I've had HEP C for 43 plus years.  My last HEP C RNA test was over 3,800,000 and would also ask is this real high or not?? My Doctor said it is not a concern because it will spike from day to day. I've been reading a lot of posts on this forum and what so many people like myself have been going through and It brought me to tears many times ( and I'm a tough old Montana raised man ) . I was lucky to find a Liver Disease Center in Baltimore and without insurance I really gave up on getting cured and this was after I was told I had progressed to stage 4 and I was in and I will quote " In a state of emergency for treatment".   With in minutes of being told this my doctor and his staff were on the phone to Gilead and Johnson & Johnson to get me help with the drugs. My Doctor came over to me and whispered in my ear.  We will cure you of this disease.    I was accepted by both after having to prove I didn't have a million dollars buried in the back yard.  So for this first time in over 10 years I have hope that my grand babies will have a chance to get to know me and I will get to watch them grow up.  God Bless you all and even though I don't know you I really do.  Like me you have been dealing with this silent monster that for most of us were given without us knowing and sure as heck didn't need.    Sincerely Jim

[canythingbutaverage]

I think we're in a similar boat, Genotype 1a, decompensated liver, (your RNA load is high, it's not "here's an advanced care directive" high, it's just high.)

Pain in the chest, not so much. But specificity is important, often I've had RXs for Omeprazole DR due to complications in my esophagus from portal hypertension/varicies. It doesn't always accompany eating, but it's a discomfort that starts as a dull pain a lil above the sternum and moves its way down your upper back (behind your heart) where it starts to become more radial.

as for right side pain? you betcha! I've found that staying in a position for an extended period of time starts as random sharp pains in my right side, eventually become almost a crippling pain in the lumbar region. I've noticed this especially happens when I'm sitting for long periods of time, or if I'm awake for more than 14 hours in a day.

I've had RNA tests at 9 million+. Luckily even though my last treatment failed I'm at a little over 2 million now. Also did you grab the first run of the peginterferon? because that shit was horrible as a once a week, the three times a week non-peg back in 2000 was nerve racking, watching my mom go through that is forever etched into my memory.

I'm only 28, but yea, this new stuff...it's a cake walk.

[Jim]

Thanks for the reply. I was on the one shot of peg and rib. study like you Mother  and I only made it 6 mo before they took me off it because  I didn't pass their depression tests.  I had a liver biopsy test a month or so before going on the program.  The doctor missed my liver and ran the needle through both wall of my gallbladder.  I blacked out and when I woke up he said he didn't get a sample and that we would try it again at a latter date and sent me home.  What he didn't tell me is that there was bile on the needle and that he knew what he had done.  I woke up about 4 AM and couldn't even crawl from the couch to my bedroom to wake my wife.  Went back to the hospital at half an hour later to the emergency room and they told me what they thought had happened and admitted me.  I laid there for 3 days getting sicker and sicker.  On day 4 my wife saw a doctor walking down the hall and asked if he could take a look at me because I wasn't doing very good.  That saved my life.  I woke up later that same day and all my kids, parents, friends and wife were all standing around me sobbing.  Being on morphine I said did someone die. I guess the bottom of my feet were turning black and they had only given me a day or so to live.  I then had a gallbladder surgeon turn my head and he said" Jim we really need to get your gallbladder out right now. Is that ok with you" Next thing I remember is waking up with 2 tubes out of both sides of my stomach area, 1 out of my belly button,1 out of my nose that were all hooked up to a pump system.  I laid there for another 5 days which I really don't remember much of.  Not a good start with learning I had HEP C. Then 6 months on the Peg/rib study.  Boy sure don't miss those days. LOL  Day 20 today on the Olysio/sovaldi and with real hope of getting this liver eating disease out of my body forever.  Thanks for the info on my HEP RN test results.  I get my first blood test drawn tomorrow since going on the drugs and will know the results in a week. Excited to see if the drugs are working..   God bless  Sincerely Jim

[canythingbutaverage]

   My mom was a different person on that treatment, a lot of her during this time is literally blank in my memory because i refuse to see my mother in that light. When i went on it, i was such an intolerable prick, heh.

   Damn man! i thought thought my second biopsy was bad. Apparently some doctors are okay with the whole "seems fine" mentality. My doc nicked my hepatic artery, i lost a huge chunk of blood, found this out two days after i went home from the biopsy. ಠ_ಠ it wasn't how I'd imagined spring break senior year to go. Bile where it shouldn't be? #passonthatshitlikeakidneystone did you get some serious stones from the breakdown?

Are you stage four decomp, or is your liver still fightin' the nods?

Also I'm two days behind ya, day 18 on the Sovaldi Olysio. Has the treatment lessened the pain you're feeling at all, or enhanced your symptoms?

Some of my symptoms are worsened, but overall things are more bearable, i imagine that this is more so due to the psychological reassurance that this treatment has such a high efficacy rate. #thebest90srefrencesiveheardlately

i apologize for the potential conversational generation gap colloquialisms.

[Jim]

Thanks for the reply,  My liver is working well and just in stage 4,  I m so glad you brought this up.  The pain has worsened for sure then before starting the drugs.  I hope that it is a sign the solvadi and olysio is doing battle with the disease and winning.  No kidney stones from the doctors screw up, thanks goodness.  I ve had HEP C for a real long time (43years).  When and how did you get infected or do you know?  Wow this is great to talk to someone that is going through basically the same as me.  Hope I answered all you questions. Thanks again Sincerely JIm

[canythingbutaverage]

you did wonderfully, and there is something to be said from fighting a fight alongside others. I'm glad to see your liver is working well, it offers you a far better outcome and faster recovery. I find the pain in the same sense, although I'm pretty sure my near incontinence the first week was a sign of that as well. I hope.

I am a vertical transfer, I've had it since birth.

I found out i had it when i was in middleschool, within a few months my family was tested, and the source was revealed to be my mother. She went on treatment within a year, which was a mistake. She was hardly in the emotional state to start a treatment that insane(non-peg interferon.) Neither of us knew how it would be. In a sense it was a bond that helped us grow tighter and also helped fuel a lot of emotional issues.
   My mother has since been able to clear the virus on the last treatment she and i went on three years ago(for her, and two years ago for me) i was not as lucky. It kills her to this day, that i would be the one of us who failed once again. But the treatment was hard on both of us, transfusions, months of procrit for her, and a near death event for me, the Rib/Peg/Incivik combo is the worst treatment available. (I've tried the treatment and failed three times)
   I don't really know life before HCV (some interesting ways it's affected me: I've never had alcohol and never was required/allowed to do any of the normal team sports or PE that kids do because of risk to my own well being), as horrible as the virus is and has been to me, i am blessed to have been given this amazing perspective and love of life. It may keep me up at night, erode my relationships, ostracize me from my peers, and work hard to decay my dear memories, while it does not define me this virus has become part of my identity in a sense.

If you'd like to follow up more often i have a blog i regularly post to, I've been posting since my last treatment. If you are to read it, i forewarn you these things. I have a knack for pop culture references, poetry, optimistic sarcasm and cynicism flowery inspirational writing and well worded explanations.

http://canythingbutaverage.blogspot.com/

[lporterrn]

I feel like a fly on the wall, witnessing bravery and honesty. Thank you both for being on this forum.

[Marysee]

I agree thank you both for sharing your stories and good luck with the treatment, the new drugs are a miracle.

[lpoioi]

Such brave and strong. Wish things got better and you feel good now.  Chronic pain really need to be treated immediately but always consult a doctor for proper medication at http://ezbuyrx.com/

[rainbowray]

You guys are tough cookies.
I have been with HepC also for 43 years. Being a reader of testimonies and trial results thru the years I refused to have biopsy's and interferon treatments. I know that a biopsy is a pre required procedure for Drs. to prescribe Interferon so I took the chance that my liver would not get destroyed by the virus. Lately the symptoms were getting systemic and the news of new drugs in pill form only, got me to check things out.
The fibrosure bloodtest and the fibroscan, both not invasive is the way to go.
I took both tests to confirm results of Stage 3 fibrosis, bridging. (no cirrhosis).
I caught things just in time.
I'm on day 11 of treatment and am anxious to get tested next week. No real issues yet. A little anxiety at night is all.  Thank God.
What got me was when one Doctor said I "had" to do treatment and that to start treatment I would have to quit work for a year and go on disability. Then he said i had to  get a hole in my liver to start. i just thought it was medicine and healing gone backwards. You guys that did the treatments in the day, my hats off to your courage.

[Jim]

Rainbowray,  thanks for the comment.  Day 11 for you is great news.  Welcome to the troops of HEP C WARRIORS.  Hopefully you had insurance or like me found someone and hopefully not 2800 miles away like me that was willing to go to bat for you and help with getting the drug direct from J AND J and Gilead for no cost.  Day 47 for me and all is better then expected on side effects.  The last week or so a few muscle spams ( bad Charlie horse ) in my arms and legs and joint pain in both knees and ankles.   Might just be from old age but new to this old man.  Hats off to you my friend for not jumping into the money pain and suffering pit the medical community established and milked for over 14 years.  Like so many others I was lied to  and was told I would die because of the disease and truth most will die with the disease that contract it after age 30 or so.   if you to have had HEP C for 43 years ( like myself )  did you get it from the misuse of air guns when drafted into this fine countries army?  Good luck let me (us) know how your doing from time to time.  It is good to share a few thoughts with other Warriors on here.  For the first time since I found out I had this liver killer In 2000 I don't feel totally alone.  Jim

[Mike]

Hi Jim,

I was part of 2000-2001 PEG clinical trials and that was a bitch - I mean horrific 48 weeks. I failed the treatment (had a partial response) and have warehoused myself for the past 13 years as I was not willing to go through another 24-48 weeks of Interferon.

Fast forward to this year and I completed a 12 weeks course of SOL+INTF+RIBV in April and just got my 12 week post treatment results and I achieved SVR12 = cured.

I had a pain in the right side, next to the short ribs for the past decade, which is gone now. This is indicative of the liver inflammation subsiding, which seemed to occur after the second week of treatment. All liver enzymes normalized after week two of treatment.

I had moderate fibrosis and VL was 9 million UL prior to treatment. I was infected 33 years and GT 1a.

I would encourage you to start treatment ASAP. After going through the PEG clinical trials, this will be a walk in the park!

Best wishes, Mike

[Jim]

Mike thanks for the comment.  You must have missed in my first post that Im on the S/O and today it day 47.  Yea over halfway.  First blood test came back as UNDECTABLE and that was week 3.  Ill be getting my second set of blood tests in about 9 days.  Then only the last 28 days of S/O.  Great hearing someone else live to fight another day of the PEG/RIBV  treatment.  Not fun times.  Really great to here you are cured.  Great Job  I m praying for everyone cursed with this liver killer to be blessed to fight another day.  Jim

[Mike]

Hi Jim,

I didn't miss the S/O treatment you started (day 17). I just wanted to relate my experience with chest/upper cavity pain which is associated with a Hep-C inflamed liver, how that pain dissipated during treatment and tip my hat to you for going through the 2000-2001 PEG clinical trials as I did.

Best wishes, Mike

[lpoioi]

HEP C have no symptoms, it cause inflammation particularly in the liver and gallbladder, which resulted to pain in abdomen. I think, back pain may not be related to HEP C.

[rainbowray]

Hi Jim,
Being with this for 43 years you might think you could die of something else, but i know at least 5 who have died from hepc, I know two with liver transplants, and 1 good friend with liver failure happening, now trying to get treatment. So this is a no joke disease.  Taking good care helps prolong it, and some it even goes away. But doing the prudent thing and getting tested is the best advice. Now treatments are getting somewhere so now there is hope, and no more friends dieing, I hope.

To answer your questions, I am paying total $60.00 for 24 week treatment thanks to insurance and the copay assistance. Once approved I got my first delivery sent the next day at my door. It was amazing.
I got hepc from high risk behavior and I remember the first day of symptoms. 43 years of living with "what happens next" is hopefully coming to an end.

[Mike]

Liver inflammation can cause both abdominal and back pain.

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&cad=rja&uact=8&ved=0CEYQFjAE&url=http%3A%2F%2Fwww.md-health.com%2FLiver-Pain-Symptoms.html&ei=dVDFU_2hHJKayASBmYDQBQ&usg=AFQjCNHba8D8Cyi1RUzFKW5_kwHAL_OXag

Mike

[DesertGuy]

Jim---You are the first guy that agrees with me--THE ARMY GAVE US HEP C--
I'm on day 15 of my treatment so I'm sure we will read each others stuff.
The day they gave us shots with those air guns I had blood running down my arm and so did half the guys--I've been wondering if we are qualified for their disability because of this.

[Mike]

Having previously worked as a VR&E contractor for the VA, you cannot get a service-connected disability (SCD) rating for Hep-C unless you were diagnosed prior to discharge.

Unfortunately, there is no way to substantiate/document that it was acquired due to routine military vaccinations.

Best wishes, Mike

[DesertGuy]

Mike thanks for the reply on this--but, how long ago was that? just curious because since 2010 they have been handing out PTSD disabilities like candy

[Mike]

I contracted from 2004-2010. I worked with disabled vets from Vietnam to the current conflicts. Disabiities ranged from scars, back injuries, PTSD, cancer, Gulf War Syndrome, TBI's, agent orange related illnesses (diabetes, prostate cancer, heart conditions), and all things in between, including Hep-C.

The only vets with a Hep-C SCD rated, where diagnosed while still in the service or, upon their exit medical evaluations.

I worked with several Vietnam vets, who were probably exposed  while in country (mostly medics and medivac personnel). They weren't rated for Hep-C, however, as it wasn't diagnosed at discharged (note there wasn't a test available to dx Hep-C until the early 90's (prior to that, it was dx as no-A/B hepatitis). The other issue is that it may take years after an initial exposure for liver enzymes to become elevated, which is usually the first marker that hepatitis is present.

The difficulty then becomes proving that the infection occurred while in the military - especially after being discharged over 2-3 decades ago.

Lastly, I have some misgivings about the current rate of vets being diagnosed with PTSD, given that it is easily faked and a 50% SCD rating can come with it (which means a monthly $600.00 check for life).

I'm not saying it doesn't exist - it does - but I have doubts that 45% of returning vets actually have it.

Best wishes, Mike

[DesertGuy]

Yes--I totally agree with you on the PTSD thing---fakers---and the reason I asked was that something that Obama had written in made it REAL easy for those guys to fake it.  I'm Not !!!
But the way I feel ,If the fakers get it, why shouldn't I for real. I would like to find someone that did try and apply to talk to them.

[Mike]

The first step in a SCD PTSD rating (post military) is to have the diagnosis rendered and interface with the VA system through the regional VAMC or the local VAOPC. The next step is to document a traumatic event/experience while you served. For Vietnam vets, this can be difficult, as a fire in the 80's at a Kansas City DOD military document warehouse, actually caught fire and destroyed a lot of Vietnam combat records.

The DAV, Amvet, or Am Legion have VSOs who can help in the process. Once you have the documentation, the next step is to file for a SCD and see how it goes. As you probably already know, this can be a daunting process - but it's doable. You can appeal decisions all they way to Washington. Your Congressional rep can also help.

As far as a post-military Hep-C SCD, the process would be the same. The only difference is you would have to have a physician (actually many physicians) state that, to the degree of reasonable medical certainty, this is the only way you could have been exposed to Hep-C. That would be very, very difficult indeed.

Best wishes, Mike

[amocuatli]

I have had some pretty wierd days lately back pain so bad that when I get up I have to take awhile and shuffle until it lets up. Mostly on th right side above the hip and sometimes my right shoulder and arm. And fatigued even after plenty of rest. Craving sweets ... Not feeling too good
Amo

[lporterrn]

Amo - has your doc checked you for diabetes? Fatigue and sugar cravings are why I ask.

[donk]

Amo, I'm not on treatment but had similar systems on the back pain. Doc did an ultra sound and I have kidney stones. Gall bladder stones have similar symptoms regarding the shoulder pain. Both are easily seen via ultra sound.

[amocuatli]

Thanks donk and lporter
I read about both and I think I may be having a sugar problem maybe coupled with the gallbladder attacks brought on by over eating and dieting Wow! I've got a long way to go. I also found out that there is a higher rate of diabetes in people who have hep c and there is a suspected link between the two- that hep c might help facilitate the development of diabetes in people who are prone to it. I have been following my lo glycemic diet the last few days and I feel much better today.  Now I have some direct evidence that overeating is causing my body harm--more motivation.
Thanks for your replies;
amo

[Cicero]

My hepatologist told me the same thing that Jims doc told him. In the presence of her, my Nurse-Practitioner, she told me she would cure me this year. I asked how could she guarantee, isn't it risky, and she just nodded her head & smiled.