Hep C Discussion Forum

Sydhanrahan · Guru

RE: New Member - SOT 213 days after infection

lord9fingers · Member

Just a update. SVR = Undetected, ALT & AST both at 18. The Hepatology Dept at the VA agree that my health issues I've been having are not related to the Hep C, the med's, nor my liver as it's fine. But now I've got a Primary Care Doctor who is clueless. When I went to see him, I told him that during treatment my main problem was fatigue. His response sums it up, "You couldn't of been fatigued, your labs during treatment look fine". Then he tried to say it was related to my depression, and my shrink said no, I was doing fine with my depression prior to having the symptoms. So now he says that the Hepatology Dept should treat me for my issues. He didn't even examine me, just ordered lab work. I swear some Dr's work at the VA because they're too incompetent to be in private practice. I've already filed a complaint with the patient advocate. Going to do the Gulf War Registry Exam next week hopefully, maybe that will shed some light on why I've multiple issues.

Again, my thanks to everyone for the support and kind words of encouragement.

Loopy Lisa · Guru

Dear Syd and Lord,

Along the way in life, there are things that happen that we can't control. These things have a huge impact and they blight our thought processes and well being. The only thing we can do is move forward to the best of our ability. I learnt the hard way, its important for my own well being to let things go. Its not important how, its important how you deal with it. I admire how you have pulled together Syd, it can push a person to limits when someone you once loved tries to demolish every aspect of you because they lost their control. Better to be happy, than a life of misery in comfort. Lord, you have done the hard part, you have treated and are now UND. It is commendable you made sure your previous partner was informed before you treated, the rest is now history. Please don't drive yourself crazy trying to piece the puzzle, right now concentrate on recovery. Riba is a nasty little drug that I've had some experience with it. Let your body heal, and then address the other issues so you can move forward. PSTD is not uncommon for military and non military, the only thing that can help is therapy. Riba will add wait to this, so give it time to leave your system, which as stated by Tig, is a good 6 months to a year. We all look for resolution sometimes, but what is important right now is getting back to a good baseline where you start to feel better. Sometimes, too much time to think is counter productive, it just sends us in ever decreasing circles.

Wishing everyone a stellar evening, morning, afternoon, night where ever you are. x

Sydhanrahan · Guru

You are coping with a huge load of crap and must feel very angry at having your bravery, good will, and selflessness chewed up and spat out by the system. I so hope some of your symptoms begin to abate and agree with Canuck that you have every right to sickness benefits as you certainly shouldn't be stressing about money at such a low point in your life. not being from the US I have little idea of the support usually given by the VA but it's very shocking to me that people in your situation aren't automatically offered counselling.

Sitting at home alone just means you have more time to overthink the range of symptoms you are suffering. I do hope that you will eventually be able to look back on this dark time from a position of positivity, health and growth.

My situation is nowhere near as dire as yours, but I did flee from my own home and a ten year marriage in 2013. My son and I had been bullied and humiliated for a decade. I'm not proud it took me that long to realise that nothing was going to get better. My ex hired an expensive lawyer and kept the bulk of my things, more than half the house I had built and a lot of the money I was hoping to retire on. I mention this because I too felt that the system completely failed me. The Hep C virus had a field day because of the high levels of stress I was under as I used so much of my retirement savings to rent a place while he sat happily in the house, prolonging the legal proceedings and stopping at nothing to punish me financially for daring to escape. For several years I never expected there to be any light at the end of the tunnel. Eventually it came - I live in a house where I am not a prisoner, constantly watched and criticised. my son is slowly getting over his PTSD. We are free. Being alone is the most wonderful luxury and I relish every minute of it.

I hope that you too eventually find health and happiness - you deserve it.

syd

Canuck · Guru

I wish I knew how to help! I am very concerned for how how you are feeling (physically and psychologically) and about your welfare as you are having difficulty being able to work.

Can you apply for funding (whatever kind there is) to support you through this, so that work is not demanded of you until you get better/feel better??

No matter what has happened, what has caused everything that has happened to you, and when, you are struggling now and need support now.

About your psychologist (or was it a psychiatrist, you saw?) - can you go back to him and ask him to pave the way to get you some kind of time off with pay, "disability, sick time, unemployment, vet benefits" or such (just solely based on your difficulties in performing work). Your history alone, war vet, PTSD, alcohol, suicide attempt, being ill period from an infection, joint pain, and for good measure add fatigue and riba on top of it all, cognitive acuity, etc. - maybe he can vouch for you, write a letter of support, fill out application papers for you, to qualify you (justify) that you need some time off work with pay?

This would at least give you some breathing room to digest everything,to re-group, take "some" pressure off, while hoping you will get things figured out and hopefully resolved or hopefully feeling a little better.

If I was you, I would ask my psychologist for his help in getting me some paid time off. It could only help (I think). What do you think? - would that be a possibility/feasible? I don't know how you would feel about that, but if I felt the way you do, I would want support, and financial support if possible until I felt I could work OK.

Maybe of all the docs you have seen, who you say keep bouncing you back and forth between them, maybe the psychologist would be the odd man out who might actually be of the most help in supporting you through this, by helping you qualify for time off work with pay? That's all I can think of.

I am sorry for your strife. C.

lord9fingers · Member

I highly doubt I've had HCV and liver damage for longer than I assume. I have never used IV drugs, been exposed to needles outside of the VA lab work, and I've only had sex ONE time since 2003 and that was with a IV using HCV+ female on 9/2/15. And if I had it longer than 9/2/15 then my LFT's would of shown something prior to the testing on 10/20/15. I was on the front-lines of the war and exposed to all the toxic exposures which is indicative of veterans having Mitochondrial DNA damage which includes Immunity Dysfunction in my T-Cells and NK Cells. (Which would explain a HIGH Viral Load) My LFT's have always been normal up until 10/20/15. Yes, the anemia can be related to either the Ribavirin or my existing Iron Deficiency Anemia (which has not been diagnosed and also is indicative of Mitochondrial DNA damage). In addition, many of the problems I'm experiencing now are related to GWI and NOT HCV or Ribavirin. CFS can be caused by a viral infection in a immune dysfunctional system as they have already researched. GWI is still not fully understood, but it's clear the GW vets are having more long-term effects than non-deployed vets, along with an increased risk of CFS, Fibromyalgia, MS, ALS, and cancer.

My Liver Ultrasound Report: 4/15/16 (not done until after SOT)

Right upper quadrant ultrasound.

Comparison: 12/7/12

The visible portion of the pancreas is within normal limits.

Liver: Liver parenchyma is only slightly hyperechoic to the right

kidney. This can be within normal limits or indicate only minimal fatty infiltration..

Liver measurement: 16.6 cm.

Normal direction of portal vein flow.

Gallbladder: Normal. Negative Murphy's sign.

Common bile duct: 4.5 mm.

Right kidney: 10.6 x 5.3 x 5.7 cm. No focal lesion.

Impression: Mild hepatomegaly.. No findings to suggest current HCC.

I do appreciate everyone's input as I'm still trying to figure out exactly what is going on. The best I've been able to figure out is that this is not the Riba or Liver damage. I base my findings on the VA, the CDC, the NCBI, and the research that is being done on Gulf War Illnesses.

Thanks again for all the support and comments, it does help me to have feedback from those who have more knowledge of HCV and HCV treatments than I have.

**NOTE** I'd like to add that a couple months prior to my testing I had attempted suicide by overdose on Acetaminophen which could also account for liver damage and elevated liver enzymes.

-- Edited by lord9fingers on Wednesday 21st of September 2016 08:46:17 PM

Ruby Red · Senior Member

Hi Randy

I too would like to thank you for your service!

I am very familiar with riba side affects, it can be tough to say the least however, like you've already heard from others it will pass and you will feel better all time. There are so many members here that are a wealth of information and we all know "knowledge is powerful".

Hey congrats on your SVR, that is spectacular!

Pablito · Senior Member

Hi Randy

I'd be careful reading lots of stuff on the internet. It's easy to find evidence to support any hypothesis.

It really sounds like you've had HCV for longer than you think and, if so, a lot of what you are experiencing could be related to liver damage. As Tig points out your viral load was not UND but 6 million, which is in keeping with someone who has had HCV for some time. Thankfully your LFTs are only moderately raised - if you were in the acute phase they would have been much much higher. As such, I don't believe the VA doctor treated you inappropriately (i.e. before they could out-rule a spontaneous clearance).

The anaemia is almost certainly related to ribavirin and not auto-immune, which is good news as it will get better over the coming months.

I can understand your anger at the way treatment was thrust upon you so quickly and that there was a lack of consideration for your mental health (I did 4 months of interferon and ribavirin in the past and it made my depression worse), but I hope with time you can turn your thinking around and consider that you were lucky to get treatment so quickly. Many have to wait ages, and if you didn't have treatment HCV would have ultimately killed you.

Apologies if I am being overly direct with you, and I sympathise with your symptoms regardless of what's causing them, but it's all meant with the best of intentions.

Pablo

Cheddy · Moderator

Randy,

Wow. I'm speechless.

I deeply wish you the best in getting this all sorted out. I thank you for your service, but I feel terrible about the price you have paid. Keep putting one foot in front of the other and know how much we hope you make headway on this soon so that you can get on with feeling better. Wow.

Cheddy

lord9fingers · Member

Just an update. After concluding that my current health issues were not consistent with it being either liver damage or the Ribavirin, I stopped looking into it. But I did start looking into the recent research that the Government is doing into the Gulf War Illness. They finally decided to actually start researching it back in 2014 but I hadn't checked into it. Once I did, I realized that my health problems are all more related to the various illnesses of GWI than to the Hep C virus. As any Vietnam Vet knows, it takes the VA forever to admit that you were messed up due to the military, just look at how many were infected with Hep C due to the inoculations. Now I was a Army Infantry Sgt with the 24th ID and we were the 1st heavy armor unit sent to the Gulf. Of all the various factors they have suspected to cause the GWI, I was exposed to everything but the oil well fires as my unit went straight into Iraq. I was in an area that had suspected low level nerve agents released from ammo bunkers.

I've already numerous related issues in my VA records, and thanks to the new research it answered some of my lingering health questions. Seems that vet's with symptoms like mine have proven to have Mitochondrial DNA damage, and that affects our immunity system among other things. And they are classifying the GWI as a autoimmune disorder. The Dr who wanted me to participate in his study, is studying how genetic factors affect viral infections. Primarily the T-cells and one of the factors with mitochondrial dna damage is how it affects the T-cells. It also means from what I understand is that either the virus or the antiviral medication could have affected my GWI. Now the Dr may have done me a favor treating me so early, but it also could mean it screwed up my GWI. And now I've got to try to convince my own Dr that this is what it is. I've been unable to work for almost 6 months now. I tried to work, but that only made all my symptoms worse.

I want to thank everyone here who took the time to either read this or offer advice. I wish everyone the best of luck with their health, as I at now have a better understanding of what all of you have went thru. I was lucky to be treated early and I've been spared some of the problems most of you all have had to endure. Maybe my small contribution to this Dr's research will be helpful in improving the immunity system in fighting viral infections.

Randy

lord9fingers · Member

Thanks for the link to Healio, I spent a lot of time on there yesterday. I may be over reacting to all this because my head is definitely not working right. I really won't know what's going on until I get some labs done. I worry about my iron deficiency I've had for years, I take iron pills but that just keeps my iron levels up, can never get my ferritin levels up to normal. They've never determined the cause of it, since I'm a Gulf War vet they just added it to my gulf war syndrome (illness) undiagnosed category. I do agree that I was infected, and I was lucky to get treated so early. Whether I might have cleared or not is irrelevant now. My enzymes didn't really change much in between Oct and Feb.

I'm hanging in there but I really wish I'd been better prepared for this. I also wish my Dr would at least say something about my problems. A simple "it's the Riba" or a "Oh your screwed" would be better than ignoring me. I don't know if the VA will help me out or not, this not being able to work is seriously hurting my finances. Since this isn't service connected, and I'm pretty sure I'm cured of it now so it's not an ongoing infection.

Anyway, thanks for the info and advice. Now back to another stressful day of laying on my a**.

Tig · Admin

Your pre treatment viral load was 6+ Million. The "undetected" is the reference range. That means basically, normal = undetected. Any quantification is listed by IU/ml. You were undetected following the 5/25 and 6/22 tests.

So when you had that test done, you had a high viral load. This could be the result of an acute response, but you obviously had an active infection. Your chances of clearing it would depend on your IL28B status and lots of luck. 2 in 10 odds aren't that good. So you may be ahead of the game and cured. 80% usually advance to the chronic phase.

Your ALT and AST are stellar!

lord9fingers · Member

This is the only RNA test prior to treatment. I've included my AST and ALT levels plus the results from the RNA tests done during treatment.

Lab Test: Hepatitis C RNA by PCR

Lab Type: Chemistry/Hematology

Ordering Provider:

Ordering Location: JAMES H QUILLEN VAMC

Specimen: Serum (substance)

Date/Time Collected: 21 Oct 2015 @ 0206

Collected Location: JAMES H QUILLEN VAMC

-------------------------------------------------------------------------

Test Name: HEPATITIS C PCR LOG10(IU/ML)

Result: 6.79

Units: LOG(IU/ML)

Reference Range: (Not Detected)

Interpretation: --

Performing Location: LEXINGTON VA MEDICAL CENTER 1101 VETERANS DRIVE ,

LEXINGTON, KY 40511-1052

Status: Final

----------------------

Test Name: HEPATITIS C VIRUS RNA QUANT (PCR)

Result: 6,151,768

Units: IU/mL

Reference Range: (Not Detected)

Interpretation: Note: 7-19-12. Test now component of HEPATITIS C QUANTITATIVE

panel test.

NOTE UNIT CHANGE PER LAB CORP AS OF 6/5/00: (Units were

reported as Copies/mL prior to 6/5/00. IU/mL is used to standardize the

reporting between different methodologies. The two are clinically

equivalent, so there is no need rebaseline patients). (prior to 7-19-12)

Performing Location: LEXINGTON VA MEDICAL CENTER 1101 VETERANS DRIVE ,

LEXINGTON, KY 40511-1052

Status: Final

----------------

	10/20/15	02/19/16	04/14/16	04/27/16	05/25/16	06/22/16
SGOT (AST)	130.0	104	21.0	22.0	20.0	26.0
SGPT (ALT)	172.0	203	15.0	16.0	17.0	21.0

	04/14/16	04/27/16	05/25/16	06/22/16
HEPATITIS C PCR LOG10(IU/ML)	<1.08 LOG(IU/ML)	<1.08 LOG(IU/ML)	Not detected	Not detected
HEPATITIS C VIRUS RNA QUANT (PCR)	< 12 IU/mL	< 12 IU/mL	Not detected	Not detected

Tig · Admin

Here is a long article published recently by Healio on the state of care and testing within the US VA system. You have to register to read the Healio content after a few visits to their site.

Fighting the War on HCV - VA

Healio VA Misc.

Tig · Admin

Hi Randy,

I would like some clarification on your RNA viral load. You list a 6 Mil+ viral load and then mention undetected. I have a feeling that the undetected reference is the "normal" reference and not the result. That is a common way of listing it. If that's the way it's listed, then you should pay attention to the 6 million IU/ml, not the undetected reference. Please feel free to copy your actual redacted report here so I can see it as written.

Since you haven't had another Viral load test since you ended treatment, that along with a CBC and CMP will be the next tests you should have. If you wait until EOT+12, it will determine treatment success.

The way I read your FIB 4, (2.1) is in a category they consider a gray area. FIB-4 between 1.45 - 3.25: inconclusive. I'm not convinced blood marker fibrosis tests are worth much, but that's just my opinion. A baseline Fibroscan and a followup or a biopsy tend to be more accurate. They can also utilize MRI.

Since you just completed treatment, give it some time. You'll start clearing the Ribavirin and the anemia caused by it will resolve. It takes time to accomplish. Don't spend all your time searching for the ugly side effects from treatment, there are a lot of them. Concentrate on recovery and regaining your health. There isn't anything you can do about being started on treatment in the manner you were. It's done and now you need the proper follow up testing to confirm the outcome.

The psychological and physical effects of Ribavirin are well known. Shortness of breath, profound fatigue, anemia and depression, irritation, moodiness, etc., are all part of the process. Once finished, you will recover, but it could take 6 to 12 months to witness. My experience with it, as well as helping others through it, gives me some knowledge in that area. Don't over think all of this, it doesn't help or change the recovery requirement. Time is what it takes and understanding from those that have been through it. All I can say is to hang in there and let time work it's magic.

lord9fingers · Member

I understand I'm new to this, I only had 6 wks from being told I had Hep C to SOT. And every single time I have informed the VA of my issues, they just tell me to see my primary care Dr, and he has nothing to do with this. He's just a general practitioner, which is why he sent me to Hepatology. I only had one RNA test prior to treatment and it came back Not Detected. I feel that from what I can understand he should of had me do another RNA test 6 months later. But the DR, rushed me into accepting his "Study", it was either I accepted then an there to join his study or I'd not get treated by the VA. I figured their was something about my medical history or because I'd just gotten infected that was important to his research so I accepted (plus I'd get treated). Since I finished treatment, I can't get ANY answers about the problems I'm having from the Dr. Dealing with the VA is a pain even when you feel well.

I don't get labs for another 9 days and that's just for the 6 mo EOT test. Trying to get with my primary care Dr and I still don't have an appointment even though I've requested one over a wk ago. I definitely know I'm suffering from some type of anemia and it's not iron deficiency related, as I've had that for years. From what I can tell it is hemolytic anemia but I need a CBC and CMP just to be sure. I've not had any lab work done since I finished the Sof + Rib. While on them, I had absolutely no energy with my fatigue. Now it's shortness of breath type fatigue with low energy. I'm short of breath upon waking, and even just sitting here now i have it. On the meds, my mind wasn't foggy and my cognitive functions were normal, and now my mind's in a haze and trouble with my cognitive functions. No pain anywhere while on the meds, now joint pain, back pain, and in my upper right abdominal quadrant. No High BP history prior to now, but now I have High BP.

I didn't even look into Hep C until after I started having problems after treatment. That's when I came across this discussion group. I have tried to get most of my information from websites like the VA, the CDC, the WHO, the FDA, and related medical/university/research websites. I've even started translating my searches in Chinese, doing a search on the Chinese websites, and then having Google translate it into English since they have done a lot research on Hepatitis. I'm also doing online courses on Hep C with the University of Washington, though not for college credit. And I bookmarked Medscape and will check them out today.

I am hoping that this is Riba related and that it will go away in the next few months. Problem is, I can't work in my current shape and I can't afford to live without working. I already know that the Dr has violated guidelines regarding my mental health issues and my psychiatrist is very upset about it. I didn't know anything about that. It's not in any of the patient info the VA referenced to me. I also do not feel that him diagnosing me as Chronic Hepatitis based on one RNA test with Not Detected and a ALT level <200 is correct. And every time I do the Fib-4 score, I get 2.10 not 1.67. So if anyone can verify that for me I'd appreciate it. (Age 47 AST 130 ALT 172 PLT 222)

I really do appreciate everyone's help, I was clueless about Hep C prior to my having issues AFTER treatment. But now I know that at the very least, the VA needs to change their patient information to include mental health/PTSD in it. Because while it's in my medical records and the Dr should of known, I didn't know it was an issue with treatment.

Tig · Admin

The concerns regarding the IL28B polymorphism (CC,CT,TT) were regarded more important on the Interferon protocols. Sovaldi and the all oral DAA's aren't impacted by them as critically. Most of the literature listed in your post were quite dated and referenced interferon protocols. Medscape has some good information but requires registration.

Are you currently suffering from hemolytic anemia? Do you have a current CBC and CMP? Since you just finished treatment and are currently undetected, I would try to relax and do some recovering first. Ribavirin causes hemolytic anemia, we used to gauge treatment response by how bad our anemia was. I remember it well. Was in isolation for awhile, my WBC's crashed and then the RBC's, Hgb too. So sick I couldn't get up some days. It takes 6 months to recover from Ribavirin. Unfortunately Ribavirin is well known for making you feel the way you do. Trust me, I know these facts to be true. The best thing you can do and please take no offense, quit reading all the Hep C horror stories on the Internet.

I wish you had joined us earlier in your care. We have years of experience here and we have been where you are. We would've been here to help you through it. We're here now, let us know if you have any questions. It gets better, that I assure you. Don't let some old data and ugly stories on the Internet convince you of anything. Treatments are effective and those that do it without Ribavirin have few, if any side effects. Not so fortunate with Riba.

Hope you get to feeling better. If I can assist you, please ask.

Phoenix17 · Senior Member

Thanks for the info L9F. I am pretty new to all of this as well. You have already have this beat. It can only get better from here!

lord9fingers · Member

Some information I've come across already. In regards to Genetics and Hepatitis:

Hepatitis C and the IL28B Gene - http://www.treatmentactiongroup.org/hcv/factsheets/il28b

A single IL28B genotype SNP rs12979860 determination predicts treatment response in patients with chronic hepatitis C Genotype 1 virus.

- http://www.ncbi.nlm.nih.gov/pubmed/21900787

Factors Associated with Spontaneous Clearance of Hepatitis C Virus in Chinese Population - https://www.hindawi.com/journals/bmri/2014/527030/

Genetic variation in IL28B predicts hepatitis C treatment-induced viral clearance - http://www.nature.com/nature/journal/v461/n7262/full/nature08309.html

Importance of IL28B gene polymorphisms in hepatitis C virus genotype 2 and 3 infected patients - http://www.sciencedirect.com/science/article/pii/S0168827810008342

In Regards to Autoimmune hepalytic anemia

Risk of immune thrombocytopenic purpura and autoimmune hemolytic anemia among 120 908 US veterans with hepatitis C virus infection. - http://www.ncbi.nlm.nih.gov/pubmed/11799634?log$=activity

Chronic hepatitis C associated with Coombs-positive hemolytic anemia. - http://www.ncbi.nlm.nih.gov/pubmed/15297855

And since I have Iron Deficiency Anemia

The effect of iron depletion on chronic hepatitis C virus infection - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716881/?log$=activity

So my iron deficiency keeps my body from producing enough RBC's to counter my bodies destruction of RBC's. The study above on ITP or AHIA among US Vets, shows that Ribavirin plays a part in developing AHIA not the Hepatitis virus. In addition, since my body "MAY" have cleared the virus, the effects of Ribavirin after clearance can lead to AHIA, though it's clear more research is needed and that there is usually some other health issue that contributes to it.

Now since my Dr is an "Expert" on Hepatitis and T-Cells, has 25 years experience, published in over 80 journels/publications, etc I'd expect him to know more than someone with an internet connection and lot's of free time. If my symptoms I've been experiencing are something he is aware of, then why hasn't he said something? If it was the Ribavirin or Liver Dmg, then he should know. If it's something like Riba, then why doesn't he tell me that I should be fine after it clears my body? If he doesn't know, then you would think he should evaluate the issue. But if he's remaining silent and trying to pawn me off on someone else who is less knowledgeable than him, then I get suspicious. The way he disregarded established guidelines, misdiagnosed my condition according to CDC definitions (I was probable Acute Hep C not confirmed or Chronic Hep C). He stated he was going to retest my labs and see me back in a month to reevaluate my condition, but did not order a RNA test and in one month I did go back but that was to start Tx. At the very least he should of waited 6 months and retested me. But at my Feb appointment was almost 6 mo's after infection and would be the Prime time to acquire the 11 vials of blood they took from me. That is if I do have the gene. Plus why would a highly regarded expert fail to follow guidelines in regards to my depression, in not following CDC guidelines, and if he knew that I could develop AIHA then he knew he could cause me serious health problems. The only reason I can see for the risk would be if I had the Gene. Why delay relaying test results for 3 months and then rush me into treatment 6 wks after diagnosis? Besides, the VA will have to take care of me and he is free from consequences.

I'm glad I got treated, I considered myself lucky, and it is for a good area of research (connecting why the Gene improves immunity will help lots of people), but I also have to watch out for myself, and had I not gotten help prior to this, I might have considered suicide during treatment. But I survived only to have this happen, and I have to look out for myself. I only want to be healthy enough to continue working my simple easy job. But now I may have to deal with this. Still I can understand why he did it, and his research will put us closer to developing better treatments for others. Still I hope I'm wrong and it's the Riba still in my system :)

Canuck · Guru

Hi L9F,

Welcome from me too. I see you have met many of the folk here.

I am sorry for your troubles, and I do hope you will find solace and some answers here.

Wishing you felt better. smile C.

Cheddy · Moderator

Like Tig, I had very depressing sides with ribavirin. I have recovered with flying colors, but needed to start an antidepressant to break the spell. I turned around very quickly and the anemia resolved pretty quickly, too. I was lucky. It know it can take a very long time to clear this stuff from your body, especially depending on other health care conditions. Keep up the mega water intake. I notice distinctly when I'm down as I get tired and achy more easily.

As for the seriousness of the anemia, get help. You will never feel good until that improves. It will improve on it's own over time, but there may be more options to speed that up. A second opinion could be helpful.

I'm sorry that you are feeling so poorly. When your in it, your in it and hope is distant. I had to learn a whole new version of patience and, more importantly, had to learn not to listen to myself until the end. My doc kept saying, "Don't worry, It's the drugs." Separating that from my feeling was challenging.

I'm rambling. 1.Get another opinion or revisit your doctor. 2.Focus on the outcome and not on your feelings. 3. Drink water and eat well. 4. Be patient with yourself. The outcome isn't here yet.

All the best.

Cheddy

Tig · Admin

Ribavirin is known to cause hemolytic anemia in many that take it. I had it, bad. It doesn't persist after treatment, but does take some time to resolve post treatment.

Can you tell me what the issues you are concerned about now? It seems that you have completed treatment successfully and achieved SVR. The side effects you speak of sound Ribavirin related, anemia, depression and brain fog. They will improve but takes 6 months or more to accomplish.

What genetic marker are you referring to? The CC allele or something else?

I would suggest you contact a civilian hepatologist. If you're unhappy with the VA specialist and can't get any answers, you have to seek another opinion.

lord9fingers · Member

After all this time, I've finally found my answer to many questions that has puzzled me since I got tested. From the way they waited 3 months from time of initial lab results to have me come in. And in 6 wks after my agreeing to participate you've got me in treatment. The way they stated in my notes that they would retest me and have me come back in 1 month to reevaluate me for treatment and yet they didn't do a RNA test. The way that 5 min's after the 1st Dr tells me I have Hep C another Dr comes in and tells me he can treat me if I participate in this study. The way they've ignored the symptoms I've had after treatment and way I was chosen to participate.

I started out like most people, looking at WebMD type sites, and being a Vet the VA website. Then I turned to this forum and others for answers. Then I started looking at WHO, CDC, and actual clinical studies. Yesterday after posting on here I started making some real progress. I've already found numerous clinical trials to support my findings. And the Dr who is doing the trial would be considered an Expert in this. If I, a former infantryman and current pizza deliver driver can spend less than 2 months researching this (With increasing Brain Fog), then an expert like him should of easily have known about this.

I don't want to go into much detail, but this is serious and its Autoimmune hemolytic anemia. He knew the risks, but I was also important to the study he is conducting. It's a study that does need studying and could help everyone not just the Hep community. But he also should of seen the risks of my having this develop. I appreciate all your responses, I'm feeling much less anxiety now that I'm pretty positive I've answered the questions I've had. I've got to get a CBC and at my current state I may need to have a blood transfusion. I even found a case study with someone same age, race, and other factors.

I'll update as I can. Oh and the reason I'm important to him is a genetic marker that has a high spontaneous clearance rate. The RNA test he didn't do would of been roughly my 6 month point and may have shown that. But my next RNA test wasn't done till the 2 wk.

JimmyK · Guru

Greetings,

Reading through it all, I personally would suspect the Tattoo in 93 and consider it more likely the cause of infection.

I would also ask for clarification on the following;

"HEPATITIS C PCR LOG10(IU/ML) 6.79 LOG(IU/ML) (Not Detected) Final and HEPATITIS C VIRUS RNA QUANT (PCR) 6,151,768 IU/mL (Not Detected) Final. ALT 172, AST 130, FIB 4 Score 1.67

The readings of both 6.79 and 6,151,768 are the detection values so Not Detected behind those numbers is not correct. I am only saying this because it is very important to have proper figures to determine proper guidance.

As to the post treatment symptoms many are common to RBV and they take time to fade. Mine took and easy six months and it was for me quite debilitating.

You are in a great group here. We care for each other and we would all like to warmly welcome you and assure you that you are not alone and as we like to say here from time to time, this too will pass.

JimmyK

Sydhanrahan · Guru

Hi Lord9fingers - there must be a story behind that name. . I can understand that you feel you have been rushed into a treatment without having the sides explained.

Unlike you, I had had Hep C for over forty years and was on the way out before treatment came along. Where our stiries start to sound similar is in the lack of explanation on how RIBA would make you fee. Like you, I was depressed and no one explained that RIBA would make this a hundred times worse. I took it for 12 weeks and finished on 3/4/16. A

like you the effects began to disappear quite quickly but thise 12 weeks were hard. I didn't want to go outside, felt very angry, seemed to have little control over my emotions and began to feel suicidal. I suppose if the doctors tell you this, there's a chance you'll have apsychosomatic response so they think it's better to keep you in the dark. I had terrible itching, strange little warty growths here and there and my skin went thin, dry and generally reptilian. a lot of my hair has fallen out. No sign of any regrowth yet. What is really interesting to me is your description of your joint pain. My hips and kegs are very sore and I got a lump in my right wrist which is agonising and stops me from doing many things with that arm. I wish we had both been given Harvoni or one of the new treatments that doesn't need a RIBA backup.

all I can say now, is that I am incredibly grateful to be cured. I feel stronger and happier in myself that I have for years. My lethargy is gradually improving. I'm sure you will come through this but can understand your sense of betrayal when the disease was so comparatively new to you. Try not to waste your emotional energyon it and look forward to a lessening of symptoms shortly.

regards,

Syd

Tig · Admin

Hi Randy,

Welcome to the forum. Congrats on your SVR, that's definitely something to celebrate!

The symptoms you describe sound very Ribavirin like. It took me all of 6 months to clear it from my system. I continued to notice issues for a full year. It's a tough drug and is hard on your system. I think it will improve fairly soon, but each of us recovers a bit differently. You might feel better than I did, I hope you do. Just know it will happen. It's never fast enough!

With your history, the last thing in the world you should've been on is Ribavirin (jmho). It is well known to cause depression and moodiness. Sometimes severe. Sounds like you had a hard time with it. I was prescribed an anti depressant during treatment. It helped a lot, but I knew about the side effects and prepared as best as possible. Your VA docs seem to have missed some things along the way. I deal with the VA too. I know what that's all about. They recruit people for their studies as a means to improve financing and budgets. Numbers bring dollars.

Doesn't matter how you were infected, just knowing you were successful in killing the beast, is. I was likely infected by tattoos. Lots of unsterile work going on before they tightened up the health regulations. They used to pour used ink back into bottles all the time! That went on for years. The important thing is coming away clear of this disease. I am feeling better, but it has taken time to get there. We had to treat, so consider these post treatment issues as part of the recovery process.

I'm glad you're here!

lord9fingers · Member

Thanks for the information. Like I said, they didn't even look at my liver until AFTER I started treatment. It was just a ultrasound and the results were: Impression: Mild hepatomegaly.. No findings to suggest current HCC.

My Bilirubin, ALP, Albumin, and PT were all normal. Only my AST/ALT were high, but not above 200. According to the CDC Hepatitis C, acute 2016 case definition, my ALT levels should be >200. And while I had numeric values on my RNA they still showed as (Not Detected) instead of a positive (Detected) as I would assume.

I'm pretty positive of my infection date being 9/2/15. I have never used IV drugs, last surgery was 97, and only tattoo was 93. Since 2003 I have only had sex ONCE, and that was last year. And the lady prior to that is someone I'm still in contact with and has never had any positive Hepatitis results, which she had herself tested after I had tested positive. I also quit drinking over 10 years ago. And no (LOL), my lack of sex or use of alcohol is not religious related but PTSD related as I've become a recluse and alcohol makes my issues worse, but I do partake in "herbal" medication.

Had they followed up with another RNA test 6 months later or had my RNA shown Positive, or even if my liver had shown signs of damage that would of made sense. I understand the sooner a virus is treated the better the chance of SVR. But to rush me into treatment based on ONE test doesn't make sense. The 2 doctor's involved both have good qualifications, and they were awarded $1.85M from the NIH for their study.

I am hoping that the issues I'm having are Ribavirin related and not liver damage. My last lab work did have a lot of high values, and a few low values but that was before I started having symptoms. I'm hoping my lab work coming up will shed more light on what is going on. I'm also hoping I can get my primary care doctor to schedule me for another liver ultrasound. I'll have to check on the Fibroscan.

Randy

Pablito · Senior Member

Hi there

Welcome to the forum. You'll find lots of information here and support, and we should be able to help you unpick things...but there's quite a lot so it might take some time.

First-off, congrats on getting treated. I know you aren't feeling positive about it currently but it is a good thing, as without treatment HCV would have caused many, many health problems for you.

I think the first thing you need to get sorted with your doctors is what is the state of your liver fibrosis-wise? For that you'll need a fibroscan (not fibrotest) or a biopsy.

Secondly, you need to try and work out when you got HCV. On one level it's academic as you have had treatment and it looks like it's worked, but if your infection occurred earlier than you think your liver may be more damaged and this might tie in with some of the ill-effects you are now having.

It usually takes 3-6 months for HCV to seroconvert (i.e. for the antibodies to show in a blood test) post exposure so is it possible you contracted HCV before the sex incident? If you were in the acute phase your LFTs would be much higher. Mine were in the 1000s in the acute phase.

But your main concern relates to post-treatment side effects. Most of the ones you describe could be ribavirin-related. In which case, these will pass over the coming months as the drugs work their way out of the system. However, some could be liver-related problems, albeit I hear you when you say you didn't have them before treatment, and hence the importance of what I said above.

It's understandable to feel angry at this point but when the problems subside with time I hope that you will feel that you were lucky to get treated so quickly after being diagnosed. In the meantime look after yourself by eating well, drinking lots of water and staying off alcohol.

Pablo

lord9fingers · Member

Greetings and Salutations,

Guess I'll start at the beginning. On 9/2/15 I had unprotected sex with a girl I had known for years but never been intimate with before. She was a opiate addict IV user with Hep C, was menstruating and going to jail the following day. This is the only time or way I could of contracted Hep C over the past 20 years as far as I can tell. I had myself tested at my next VA Doctor's appointment with the lab work being done on 10/20/15 (49 days post infection). The results of the test was: HEPATITIS C PCR LOG10(IU/ML) 6.79 LOG(IU/ML) (Not Detected) Final and HEPATITIS C VIRUS RNA QUANT (PCR) 6,151,768 IU/mL (Not Detected) Final. ALT 172, AST 130, FIB 4 Score 1.67 *According to Dr's Notes in Medical Records*

On 2/19/16 I was scheduled an appointment with the VA Hospital Hepatology group. When the Doctor walked into the room he told me that I had tested positive for Hep C but did not qualify for treatment thru the VA. He asked no questions regarding health, mental state, or time of infection. He spent less than 5 minutes with me but asked me to wait as another Dr might be able to help me. When the 2nd Doctor came in, he told me that if I was willing to participate in a study (I thought it was a clinical trial) then they would treat me. To be honest, I was clueless to Hep C pretty much, I'd done no research of my own because I'd just found out I was infected. I asked if I had time to think it over and was told that he may not be able to offer it to me the next day. So I agreed. At this time I was 160 days post infection. I knew that being diagnosed early meant I was Acute and that not many people got diagnosed at that stage. I assumed it was because of my being Acute that they wanted to research me. NO FURTHER RNA testing was done prior to SOT.

I started treatment with SOF + RIB x12 wks on 4/2/16. They didn't do an ultrasound on my liver until 4/16/16 which showed no signs of HCC. I had no Hep C symptoms prior to SOT. I was assured that the only problem I would have during treatment was mild fatigue and I would be able to continue working. Within 2 wks of treatment I was Chronically Fatigued and had to take medical leave. I wasn't able to return to work until after treatment, I wasn't prepared financially for the loss of 3 months income. I also had some of the other side effects, namely the flu-like symptoms, and Depression. I had the usual monthly labs and teleconference with the RN.

I finished treatment on 06/25/16. I was informed that in about 3 wks I should start to feel better. I felt good after stopping the medications, returned to work on 07/18 and had no new health issues or noticeable side effects at this time. On 7/20 I woke up and knew something was not right. I had joint pain in both thumb/wrists that is mild in the morning, but increases in pain with use. I noticed the initial symptoms of anemia (5+ years of diagnosed iron deficiency) and my head was foggy. After a week of this I finally started looking online and doing the research I should had time to do prior to agreeing to treatment. I had never heard of Brain Fog until I was looking for how joint pain was related to post-treatment. Remember I had no liver related health problems prior to being treated.

It has been 45 days since I finished treatment. The joint pain has been constant everyday. The fatigue has gotten increasingly worse. The brain fog seems to be getting worse. I've had red spots appear on my chest, back, upper arms, forehead and upper legs. I've had itching that comes and goes. I had insomnia prior to treatment that I had to take Ambien for, and now my body wants to sleep for 16 hrs a day. I take iron pills and normally my stools are black, but I've had some clay-colored bowel movements that are accompanied by bad gas with sulfur belches. I've had dead skin buildup under my nails which is new. And my Major Depression is worse even though I'm on Anti-depressants. I've cut back my hours at work twice since this started and even when I do work I can no longer do my job efficiently. Due to my having a current VA disability I've been working pizza delivery for the past few years. Prior to treatment my managers said I did the work of 2 and now I'm having to have my co-workers pick up my slack. And my job still accounts for the majority of my income. I am almost unable to work at this time, but I cannot afford to be out of work.

I have made every attempt to communicate my issues to the VA doctors that started me on this treatment. The only time I spoke with either doctor was on 2/19. I was not aware of VA guidelines in the selection of candidates for treatment and so many other things. I did not know that my having Major Depression (last suicide attempt was less than 1 year ago) and doing treatment should of been discussed with my Mental Health provider. I did not know that the study I was participating in was "Comparative immunological studies for individuals with chronic viral infections." I still do not understand why they rushed me into treatment. I do not understand why I was selected for the study. But now that I've had time to look at all the guidelines I feel they did me wrong. They did not do any follow up testing prior to treatment, just the ONE RNA qual/quant text prior to starting treatment. I was tested at 2 wks, 4 wks, 8 wks, and 12 wks. All showed (Not Detected) and all my AST/ALT levels were normal. I still have my last test to be done on 9/14.

I'm pretty upset with not being advised about the issue of Major Depression and treatment. But I assumed that being VA doctors they had looked at my records and seen my issues plus medications prior to SOT. They took my elevated enzymes to indicate problems which at 7 wks after infection it is normal for my enzymes to be elevated as my immunity system was starting to work. Because of any further lack of testing prior to starting treatment, I have no idea if I had spontaneous clearance or not. I feel they failed to follow VA guidelines and I should of had a follow up test at 6 months before being considered for treatment. As a high-risk suicide patient, I should of not done treatment according to my Psychiatrist. I do not drink, I do not do IV drugs, and I've been pretty much a celibate recluse the past decade.

I apologize that this is lengthy and if you've read to this point I thank you very much. I'm at a loss as to what I should do now. I cannot afford to lose my employment, but my health is at the point right now that I'm in jeopardy of not being able to work. I do not want to stop working, I want my health back. I cannot get the Doctors to give me any help as they keep referring me to my primary care doctor. They still haven't responded to my last message I sent a week ago. And I don't know if I should start applying for ineligibility to work now or continue to hope that this will all clear itself up.

Thank you

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