I wish they would stop combining opiate medications with over the counter drugs together in the same pill, they would be just as effective if taken separately. I think they do it on purpose - "if you abuse these you'll fry your liver". I avoid tylenol at all cost but if I ask my dentist or doctor for a 5 mg oxycodone script I get nothing, just a dirty look but he prescribes percocet freely. WTF

Good post allabout. Thank you. Still a lot of stigma and misunderstandings on just how Tylenol works. What levels are safe and what levels are not. Gotta be aware of everything we put in our mouths as our liver has to deal with it.
That's whacked of your Dr. Jess! All I can get is Oxycodone for my back pain. So many other pain Rx have NSAIDS bundled and most Dr.s are aware how bad those are for folks with liver disease.
I think it might be perhaps another stigma as Oxycontin (time released Oxycodone) is high on the drugs mostly abused list..

Because of my liver damage, and possibility of bleeding, the only pain reliever I was allowed to have after surgery was Hydromorphone (Dilaudid) which gives me horrible side effects that make the Ribavirin sides seem like a tea party. I chose to recover 100% pain med-free over the side effects, and it was awful. My doc said OCCASIONAL doses of regular Tylenol at home was OK if I really, really needed it, but try to avoid that if i can. Tylenol does nothing for me anyway. So there is no pain reliever I can use at all. Ibuprophen is the only OTC med that ever really did the trick for headache, sinus pain, muscle aches, etc.., and I can't have it anymore. What do you do??

Wow - this seems to be the topic for the day - and a good one. We are writing about it in the "just took my first pill" thread - just saw this thread.

jester, you are SO RIGHT. I've run into the exact same situation. Last JUNE, my pdoc grudgingly gave me thirty 5 mg oxycodone(s) and told me it had to last a year! But oh sure, he'll give me hydrocodone - not quite "freely" but still. One dentist won't give my ANY oxycodone - period - and I had some serious painful work done before tx. He finally called in some 5/325 (tylenol part) crap. I am sure that the stigma associated with HCV has a lot to do with all this. Like I am going to what - try to score on the streets if I run out of an opiate? I think not.

beachy - I asked for Dilaudid and was given a cold hard stare. Like, "As if I would give this to a former junkie." They ASSUME I was. I wasn't. Even so, what the heck does it matter in 2014 - my drugging days are long gone or I'd be dead. However, I'm sure Dilaudid would affect me like it does you. Oxycodone at 5 mg hardly affects me, so it's next to worthless. I had ONE doctor - a different dentist - a few months back who did an extraction - who had NO problem giving me 7.5 mg of hydrocodone even though of course it was combined with the damn Tylenol. I didn't DARE ask for just the hydrocodone.

So what I do now is if the headache that Sovaldi has caused me gets really intense - take 400 mg of Ibuprofen. Like you, beachy, it's the only thing that works since I can't get a pure opiate. I lie in bed in a dark room with a cold compress over my head for some relief, which ends as soon as the compress is taken off. I suffer. Being one who never had headaches, this is debilitating. Can hardly function when the headache is at full tilt, light sensitivity going on too. No appetite. Wigged out. Don't want to move.

What is wrong with these doctors? Do they treat everyone like they do us? I don't know.

oh -- my HCV nurse told me I could take Ibuprofen up to 800 mg a day (and that really is being cautious) but should not make it a daily thing - so that's just my situation - the nurse okayed SOME use of Ibuprofen. I'm still wary of it though. But I tell ya, when the headache is at a raging point of pain, I have to take it. Or let's say I CHOOSE to take it, knowing the risks involved. We surely can't be expected to suffer - or can we?

I guess if our docs tell us to use only Tylenol, that's what we have to do. Me, I won't even bother with it. But I DID get approval for limited use of Ibuprofen.

Nurse called in some Gabapentin (generic of Neurontin) last week for my headache. It's metabolized through the kidneys, not the liver. It did NOTHING. Then a pharmacist over the weekend told me it can take up to two weeks to work! What???

If we are suffering, we should be given whatever is safest for us to take, but that will still work for us. Otherwise, there is no point at all. They might as well say we deserve to "suffer" for doing this to ourselves. I ran head on into the "stigma" in the hospital after surgery where one 3 am nurse treated me like something off the bottom of her shoe, when I was at my most vulnerable and bawling in extreme post-op pain and asking for pain meds. IN THE FREAKIN HOSPITAL where my doc had ordered it! See I had a "red alert" bracelet on my arm to denote that I had an infectious disease. I was never a drug addict. Not saying I never experimented like many people who came of age in late 70s, early 80s, but never lived an extreme a risky lifestyle. Regardless if I had, it is our healthcare professional's JOB to help us get better and feel good, not make assumptions, judge us or punish us. They work for US. Not the other way around. That one nurse told me everything I needed to know about sharing what I was going through with people. It still makes me cry when I think of it and how cruel I was treated while I was all hooked up to machines, drain tubes, and IV and could barely move after a risky and unexpectedly complicated 7 hour surgery for a standard procedure that should have taken less than 1.5 hours.. I was at her mercy. And she had none for me.

And yes, I did report that bitch.

I hear ya, beachy. Oh, I hear ya. I will never understand why we can't SUGGEST something to our docs because we KNOW it will help us manage our pain without getting "that look." I am really afraid to make any suggestions since in the past the reaction was "You seem to know WAY too much about pain meds" - you can tell they think that. I wasn't a junkie, but yes, I did experiment with IV drugs in the very late 60's. I'm sure that's how I got HCV but doesn't matter how I got it or how anyone else did. That's how I see it, but our "healthcare" professionals (and everyone else just about who doesn't have this virus) see it differently.

Ridiculous for anyone to have to suffer. I mean, the controlled substances are VERY controlled. Doctor shopping has to have pretty much ceased with the way computer systems link everything. How awful for us to feel embarrassed or afraid to ask for something that would or might help us if it's a narcotic.

My liver doc told me to take aleve for headaches....which is the NSAID naproxin. ??

See a pain specialist. Explain the liver connection and your concerns.

Typically they deal with chronic pain sufferers, but they understand excactly what you are trying to accomplish.

Besides, they are very aware of the low impact natural opiates and most opioids have on our systems.

It may take time to develop trust and find a dosage right for you, but it is worth it.

Problem is, we have "special" pain needs due to our livers. But we expect rank and file doctors and nurses to understand this. They do not.

Most general practitioners have way too much peer pressure on this topic. They couldnt help you even if they wanted to.

Pain specialists tend to be true patient advocates and loathe the social pressures of DEA controlled health care.

Good ideas, Lev. I'm at the point after reading all of this for the past couple days, that unless I am in SERIOUS pain, I will use the old cold compress on my forehead and stay in a dark room during the onslaught (of a Sovaldi headache) and suffer. I'm feeling it today behind my eyes, and having glaucoma, that's scary. Of course I do drops for the glaucoma, but I would just hate to lose my eyesight.

Six more weeks of tx to go - this is for sure a Sovaldi-related headache - just keeps on keepin' on, but at least it's not as wretched as it was for the past several days. I mean, we would like to THINK that these medical professionals would help us. I see your point, Lev, and hadn't thought of that - peer pressure. The pain meds place here is a bunch of quacks - my husband went there - disaster. Plus seeing my HCV doc once a month now is enough long distance travel.

The only thing my doc will give me for any pain is 50 mg Tramadol that I can take 4x a day. It is useless. When I was on tx & anemic doing the rescue meds neupogen caused severe bone pain for me. I have 7 herniated disks in my back & neck too. My doc promised to help me when the pain became intense but only during tx & he prescribed 5 mg oxycodone for the worst of it. He stopped it immediately when tx failed. He gave me some lidocaine patches & referred me to pain mgt. for the back problems. I hate taking meds so I just deal with the pain & didn't even go to pain mgt. I see the chiropractor plus get acupuncture on occasion. The acupuncturist did help me with headaches but I don't normally suffer with them. Seems we get used to suffering & the stigma that comes from having HCV. Dosen't matter how you got it. Assumption is IV drug use & once a drug addict always a drug addict. So judgemental, ignorant & misinformed.

Shame on docs & nurses who judge people based on their illness. I had a nurse removed from my husband's care when he told him to stop whining ... you did this to yourself. Are you freaking kidding me! My husband was in liver failure & didn't make it. How dare any medical professional disrespect not only their patient but the family as well. It disgusts me. If greed weren't involved the Gilead/BMS drug of Sol/Dac would've saved so many lives a few years ago.

I'm jumping off the soapbox now.