Hep C Discussion Forum

Observer · Guru

RE: I am cured but it took some doing

JimmyK · Guru

Hi Carl I hope you are doing well.

Fighting Dragons is tough stuff. The ride will generally include a lot of doubt and not just during, but after as well.

I believe it comes down to, at least wise in my case, that I have long assumed I would die due to complications of HepC. It is simply overwhelming sometimes to realize that I do not have HepC...anymore.

Who am I when better people before me have succumbed to The Dragon?

Who am I, that I should be blessed in such a manner?

You are going to wonder about every cramp and change you will encounter for a bit more. Then you will join me in recognizing the amazing fact that much of my comparative times, nay all of them, were at a time when I was not the age I am today.

Fact is I have no idea what 64 is supposed to feel like other than the fact I am now there and experiencing it.

I have let go of the worry of how I may feel and replaced it with the fact there was a time in my life I was certain I would never see 50.

I am thankful for every breath and many of them do come with a cringe now and then.

Frankly I am having the "time of my life" by recognizing it in it's proper place.

You are doing great and it just gets better from here. wink

JimmyK

-- Edited by JimmyK on Tuesday 4th of July 2017 09:49:52 AM

Tig · Admin

If I may, allow me to add to this, we know Ribavirin causes hemolytic anemia. It damages red blood cells and alters their life span. That alone is enough to cause the large muscles and honestly, all of your musculature to experience discomfort (pain) and spasms. Riba was really hard on me. It was rough on all of us, I'm not ever going to forget that. The side effects can be mitigated, so strict guidance and support were key in me getting through 7 months, 1200mg/day of it.

The second thought I have is how do you know that your spasms weren't secondary to the Depakote interaction? Viekira Pak was a mix of meds, combined with Riba, it was known to cause side effects. Very easily could be a combination of all these things. Thankfully you achieved SVR, but at a high cost. Clearly you should've been on a different treatment, but that ship sailed. I'm glad you're able to share that story with us. We all learn from each other's experiences. Especially when it's with people that understand...

Time now to give it as long as it takes, to heal and recover from the damage caused by the virus. Time is the only way that happens and I'm glad we get the chance.

cbr45 · Member

Hi Observer Wow why couldn't I have somebody who would tell me that even taking Tums is not good . Us Canadian brothers have to stick together AAAAAAAAA!!! I am originally from Monteral, a French Pepsi descendant from way back. My family and I moved to Oregon 46 years ago, I couldn't speak a word of English, well I learned the American language lost my french Canadian accent and seemed to fit right in with the rest of the Americans and started living the American dream.

I am very sorry that you talk about these on going issues of being very sick for 33 years with HCV, but its great that you have a much more positive state of mind now

1) that you are HCV free

2) that the things in life are now much more manageable

As I mentioned in my other texts the N.P. never told me about what side affects I will experience except mild head headaches and nausea. I experienced many of the side effects that was noted on the forums

I did not notice this side effect on the forums maybe I missed but I experienced lower leg cramping often, does Viekera or Ribavirin cause this ?

wendyo · Guru

You know I will defend Clyde. He's my little brother.

JimmyK · Guru

Greetings again.

No worries about the confusion, part of what we do here is check each others homework. wink

Regarding dumb rocks, I have to warn you Clyde may take offense. LOL

Others may fill you in on that. We have fun here.

JimmyK

Tig · Admin

Hey Carl,

Since you mentioned dumber than a rock scenario, I have to share this meme with you. All in fun of course! You're part of an unhinged group (sorta), lol!

Glad you're on top of this and hopefully together we can sail above it!

cbr45 · Member

HI Wendy thanks for welcoming me and showing an interest. I am in the process of talking with the claims adjuster from the Medical company that covers the clinic where I was treated but they are trained to reject my every opinion and statement. As Far as the N.P. I never got a chance to speak to her just shortly after I finished my treatment 12/30/16 she closed her practice and went to an other state.

cbr45 · Member

Thank-you Jimmy for welcoming me, taking in an interest in my case and asking questions. I am sorry to have mislead you or maybe said the wrong thing but you are right Ribavirin does not interact with my Depakote but Viekira Pak does. I normally get my Rx's at Costco pharmacy and they printed this out for me last week showing the dangers if the two are mixed.

I am sorry I want to appear dumber than a pocket full of rocks but I don't what an F-score is, as like I said my N.P. kept me in the dark about everything so I know very little. I have had a blood test related to the Hep-c if this would tell you anything, I will attach that should you request it fffor tell me what to look for ?

Thanks again Jimmy

JimmyK · Guru

Greetings again.

I also want to post the drug warnings for Viekira Pack.

https://www.drugs.com/drug-interactions/dasabuvir-ombitasvir-paritaprevir-ritonavir,viekira-pak-index.html?filter=3&generic_only=

This is for anyone treated with it as I was. ( I failed miserably but Harvoni made that history.)

I personally was alarmed to see all of the interactions.

JimmyK

JimmyK · Guru

Welcome Carl, we are glad you are here.

How did they determine that Depakote interacted with Ribavirin? The reason I ask is there are 740 Drugs that interact with Depakote but Ribavirin is not listed.

https://www.drugs.com/drug-interactions/divalproex-sodium,depakote.html

Mind you I am not saying they do not conflict, but I am concerned it is possible that something else you may be taking or took does. This concern is designed to carefully determine if you may have a like episode in the future with a worse outcome.

I am seeing some pretty serious interactions with common things such as aspirin / caffeine.

https://www.drugs.com/drug-interactions/divalproex-sodium,depakote-index.html?filter=3&generic_only=

Please take some time to go through the entire listing as this drug has a lot of things that do in fact interact with it.

Also as you noted, it is absolutely devastating to the Liver even without HepC.

Is there any chance your Doctor can come up with a safer medication for you?

Now that you are clear of HepC you have a better chance of repairing the Liver over time. However if it is still under attack due to Depakote that will of course hamper the chances.

Do you know your F-Score?

Again welcome and make yourself at home.

JimmyK

wendyo · Guru

WOW what a crazy ride for you. Glad you are free of the dragon but at such a cost I hope you are able to prove the negligence on the part of the NP as most of us here have had the experience where we were all questioned in depth by doctors, nurses and even the pharmacy!

wendy

-- Edited by wendyo on Monday 3rd of July 2017 06:31:16 AM

Observer · Guru

Hey ya Carl,

congrats on getting cured. Sounds like quite an ordeal! So glad no one was hurt.

I too am cured thanks to the Canadian version of Abbie Vpak.

(called the Holkira pak I think) Around the same time as you too.

I'm a little shocked the NP didn't warn you about combining those drugs. My team was so strict with me, I wasn't even allowed a Tums for heartburn.....

I have on-going issues that are from being very sick with HCV for 33 years. But I feel so much better being HCV free it makes the other stuff much more manageable.

A

cbr45 · Member

Thanks Tig hope to talk soon

Tig · Admin

Hey Carl and welcome to the forum! I'm glad you found us, too. I look forward to talking with you.

Sorry to hear about the accident and what caused it. I hope you were able to unload on the NP and let that office know what happened as a result of that huge error. Seems pretty negligent to me. If the NP wasn't under the strict guidance of the specialist (MD), that's another error. A big one...

Congrats on killing the beast! SVR is a wonderful thing indeed. The side effects from the drugs should be gone by now. Ribavirin after effects (not side effects) took me a solid year to get over. The rash, irritability, anemia, and general crappy feeling hung on for a long time. But it has been 4 years now and all is well. Some people have long term problems as a result of having HCV and those can take longer to resolve. Some never go away completely, but the majority do improve considerably.

Glad to meet you, talk again soon!

cbr45 · Member

HI people My story is good and very bad, Yeah !! I am cured I took a 12 week treatment with Viekera & Ribavirin. I instantly felt a calm when I joined this site, a place where I can relate, ask those questions and feel like that I not judge for my past as a wild child of the 80s, dealing coke passing the straw around and contracting Hep-C while battling my neurological chronic disorder epilepsy, but when the seizures came on I would self-medicate myself with coke and the pain would go away. When my Neurologist found out what I was doing he said do you want to party or die that was a no brainer so I went cold turkey and have been seizure free for 31 years. The medication I am still taking to date for piece of mind is Depakote which I understand is very hard on the liver, continued blood test showed that my liver was going south. My G.P. doctor pushed me to get my Hep-c treated and sent me to a N.P. at a clinic that handles this kind of virus. This N.P. showed me lack of duty and medical negligence. 1^st off she never checked Viekera & Ribavirin against to see if there was any adverse effects with taking my Depakote for my controlled epilepsy, as it turn out Ribavirin is deadly drug to be mixed with Depakote, this lowered my therapeutic levels to a very very dangerously low blood level, which in turn caused me to have a seizure while driving and almost killing innocent by standers and the occupants of the car I hit. This is extremely hard to prove in a court of law, and I was found guilty of taking a controlled substance and following to close, thats our screwed up system. 2^nd the N.P. never informed me about the side effects of Viekera & Ribavirin, the only thing that was told is that you might have a mild headache or nausea. Well I believed this medical professional of what she told me and did for me.. boy was I wrong. I have been feeling down the past couple months it seems the whole world is against me and I cant prove or do anything right and I have this claims adjuster that is trained to disagree and veto my arguments. Anyways the good from this no one got hurt, I am cured, my epilepsy therapeutics levels are back to normal and I received some very rock hard solid evidence last week that put a feather in my case. I wanted to tell my story in case there is someone out there that has the same neurological chronic disorder as me and I want to warn them, nobody deserves to experience what I experienced especially because of the poor work ethics of medical professional that I trusted.

My question please is that I have no idea to the side effects I was suppose to have or was exposed to? Or is anything permanent? I understand these are very strong drugs. I finished my treatment Dec 30^th 2016. Reading on the forms I picked up on a couple side effects. The itching has stopped. Sleeping ok but with wild dreams, my joints seem stiff. The emotional roller coaster ride is still with me hard, I am this tough redneck from Central Oregon lol and I cry like a baby when its something happy, sad, in different or what ever happens

I received my meds from Abbvie stellar customer service

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