interfuron treatments worth the pain?

[caiti87]

I was recently diagnosed with hep c, weird thing is that for months now my blood work had been showing really high liver enzymes and my doc screened me for hep a,b,and c three times and they ALL came back negative. Finally I was feeling soo sick and in so much pain that they admitted me to the hospital, and did an ultra sound and more blood work, when they got the results they decided to fly me to another hospital in a city two hours away, I was too sick to even be scared. after being there for a day the docs came in and told me that i had hep c and it was in the chronic phase, which is also odd to me since i've read that people have hep c their whole lives and dont suffer any symptoms. Why is mine so aggressive soo early? The doctors advised me to start interfuron and rivabbaren (sp?) as soon as im able, that if I dont I will almost certainly need a transplant or develop caner down the road. I've been reading  and trying to educate myself on this disease as much as possible, but everything I'm reading states that most people dont have many issues with it, not like mine anyway. also i've read that the treatments have terrible side effects, a nurse even compared it to chemo, which i found a little excessive but still sounds awful. So my question is, are starting the treatments immediately really that necessary and important enough that it will save me from having to get a liver transplant an or possibly cancer?? And is it worth the horrible side effects? i cant imagine going through those for up to a year, but if it means saving my life, I'll do it.  

[runsincircles]

I have interstitial cystitis as well and I am wondering what happens if you have an auto immune disease and the dr puts you through interfuron tx anyway?  It's not actually known if ic is auto immune or not, so alot of dr's will go ahead with tx as long as TSA, ANA, SED rate, etc all come back normal, which mine did.

[memaw67]

I live in a little hick town and well understand the problem with finding knowledgable doctors. When my local doctor made the diagnosis she told me that she didn't know anything about Hep C other than what she read on the internet. I decided to drive the 4 hours to St Louis and found a very well known hepatologist to treat me (I had insurance at that time though).  My local dr treated me for the side effects and other problems in between visits to St Louis. I had to see her partner one day for bronchitis and he insisted that Hep C is a veneral disease!  I tried to explain to him what Hep C is but I don't think I ever got through.  

I also have been on very strong pain meds for about 5 years because of other issues that I have.  I make sure all my doctors know all of my meds and that nothing contains anything that will damage my liver further.  Be honest with your pain doctor about your meds not working.  Alot of doctors like to rush you thru your visits. You are paying them...if you don't understand keep asking questions until you do.  It took me a long time to speak up for myself in dr apts.  Good luck with everything.

[orphanedhawk]

No problemo :)

[caiti87]

Thank you OH for helping to shed some light for others, I appreciate it so very much, I think we may have all gotten off on the wrong foot. Im comforted that I will have somewhere to turn with such great support and wisdom when the time comes...... Thank you again, especially for the apologies

[pooh55811]

Well said, OH.

[rivll]

Well said, thank you,OH.
To Caiti, my apologies and good luck to you.

[LookingForward12]

Beautiful, OH.

[orphanedhawk]

Last night when desrt posted about Caiti living in a rural area with bad health care it was like he threw a glass of water in my face.
My liver doctor is a top notch doc in S.F. Hector's is quite renown.

I made opinions based on what Caiti  told us without really being in her shoes. She's not as aware of some of us about these issues not just because she's young, but more so, because of where she lives.

If her words sound somewhat unbelievable, it may be because her doctor's are somewhat unbelievable.

Years ago, when I was pregnant with my daughter I lived in a rural area. When I told the doctor I planned to have a home birth, he told me if I did he would refuse to give me prenatal care. It was him and the hospital or no doc.
( My healthy happy baby girl was born at home, delivered by her dad)

In the spirit of compassion, lets either try and help Caiti or go on to the next post.

Trying to make peace~
OH

[caiti87]

i've made some phone calls today out of confusion of so many people on this forum doubting whether or not i have it or not. I have been assured over and over to my dismay that I do. Opiates are going to be a part of my life while there is the chronic pain, so thats a moot point as well. I will seek whatever treatment for the hep c that the health professionals deem necessary, and if that includes opiates for pain control then so be it.... im sure i cant possibly be the only person in the world with this predicament, i have faith that there are solutions. but as the others have so greatly advised me, one step at a time, meaning biopsy and counsel from a hepatologist or other qualified medical professional....

[desrt]

I got curious and looked up"chronic intersticial cystitis" on Wiki
http://en.wikipedia.org/wiki/Interstitial_cystitis
Apparently it can have an autoimmune component. Alpha-interferon may not be an option in any case. Get the biopsy, get a good hepa' or an experienced gasto', and stay up with what's going on in the all oral / non-IFN trials. Take care.

[rivll]

While I am sympathetic to your struggle, I think that this is the wrong forum for you. Assuming you have Hep. C, what everyone has told you is true, treatment is meaningless until you have overcome your opiate addiction.

[caiti87]

doesn't sound too bad at all.... thanks guys

[crigger]

They use a large punch needle and take a small piece of liver to look at.   No cutting involved... no scar... discomfort but not real painful..... they have to watch you for a while after just in case it bleeds ... rare occurance...  not that bad. Overall

[desrt]

Needle biopsy is generally a quick, simple procedure. They numb a spot between your ribs, take the sample, have you lie on your side for a couple hours to reduce the risk of bleeding, and you're out of the hospital the same day. An ultrasound guided procedure is usually SOC these days. Sometimes they'll give you a little Versed to help you lay still for the couple hours.

[caiti87]

interesting, and free is always a good thing!! I will definitely look into it. I'm very curious to know about the biopsy results as well..... I dont mean to be such a big baby, but I have to ask, how do they go about getting a biopsy? obviously they must cut me to access my liver right? is it very painful?

[orphanedhawk]

Forgive me for repeating myself but knowing more about your situation I'd like to say that because you are young, you may be in a good position to wait for the new interferon free oral treatments which are currently looking good in clinical trials. They could be available within the next 5 years.
They will most likely be of shorter duration with less side effects. How they might interact with your other meds, isn't something I am qualified to address.

I'd like to encourage you to go back to the heptalogist and get a biopsy.
Then you will know the condition of your liver. This will have a lot to do with whether you need to do treatment soon or can wait.

[caiti87]

yes you are quite right... Its not going to get any easier from here on out, but that doesnt mean i need to give up. Thank you for reminding me....

[rockymoe]

I have a friend who has had 3 back surgeries, she is in chronic pain. All the Drs do is prescribe. Her dr in Boston is sending her to a specialist doc in Boston, to see if she is a canidate for a nerve stimulater, She told her pain specialist and he kinda of Poo Pooed the idea. She asked him isn't the goal to get of all the meds.
I worked with another girl that was 23 and had back sugery and she was on Methadone. They told her they really don't know how to handle people so young with degenertive disc issues.
I think the pain specialist don't do anything but write scripts.
If you do have HCV yes it is worth treating. No one says it is going to be easy. My husband says that to me when I am having a bad day.

[jules2551]

lmao  "Can"t believe Em is still on coffee break..haha."

I hope she just enjoys her coffee...she deserves it..she puts up with a lot in here

How are you doing Will?  Good I hope!

Jules

[nygirl7]

Good bye and best of luck with everything you have going on.  
I hope that the doctors can help you.

[caiti87]

Thank you, your post literally brought me to tears.. I dont know how this attempt at getting some answers has turned into me trying to defend myself against hateful comments about me throwing my life away, intentionally leaving out pertinent info and attacking people. I'm so much more lost than before but I pray to find the answers somewhere.... Thank you for reminding me that there is kindness to be found.....

Desert, all I have to say is AMEN!!! lol it is difficult and very costly to find even barely competent healthcare in this remote area, having to drive as far as 9 hours to san antonio or 6 hours to lubbock even can be trying. Thank you also

[caiti87]

Thank you, i'd be more than happy and gracious to accept your support and give mine as often as you may need it. Just not on this forum....

[caiti87]

I was quoting him when calling him an "old folk" if you care to go back and carefully re read his post. also saying that im throwing my life away before it has began, that he pities me and my choices or life is "truly very tragic", don't quite seem like helpful advice to me..... I will be the first to admit that i am naive about my test results and the fact that my opiate use was pertinent info, besides the tylenol of course... Thank you to all those for the support, but as i stated before I will seek counsel from my doctors from here on out, they know and understand my medical history and test results far better than I do. I also know I will not be told I have given up my life before it began, but told how to hold on to it for many many more happy years to come. My intentions were never to leave out pertinent info, but whats done can not be undone. only a lesson learned......

[Emily_MHManager]

Hi everyone -

Please remember that some in this forum have used drugs, some may still.  It doesn't seem as if anyone was judging about the drug use, only saying that it is important to know in regards to health care decisions, especially around hep C.

There is no reason to continue to debate the question of who meant what and why.  Please move forward and offer the great support and info you all are so good at.  :)

Emily