pain help??

[missy_jasons_girl]

I was recently diagnosed with Hep C as well as interstitial cystitis aka painful bladder syndrome. I'm in constant severe pain all the time but my doctor says not to take Tylenol or ibuprofen. He has prescribed Elmiron, that's supposed to help with the pain but so far I feel no difference! Can someone help me??

[riker84]

This is a late response. But I too also have hep c and IC. I was diagnosed with IC at a young age and then contracted hep c, I always had taken elmiron for my IC until i contracted the Hep C. The elmiron was inflaming my liver and making my Hep C worse and my infectious disease doctor told me that i needed to consult with my specialist for my IC about another route of treatment. Elmiron is very bad for your liver and if you are taking it and have Hep C you need to get your liver levels checked regularly. Everyone is different but I know it is not good for the liver.

[jainw]

I have found that the drs all contradict themselves too. I have drug induced hepatitis (caused by RA meds) and one hospital said it was ok to take Ibuprofen (Advil)  and the other one said, no. So I only take it when the pain is really bad, and my joints are inflammed - what is the point of a healthy liver is you are in so much pain and thus so tired, that you can not do ANYTHING. I am trying to avoid Paracetamol (Tylenol) though. I don't understand why you can't have narcotic pain killer - I would try another Doctor I think. Good Luck

[Hepperinpain]

Hi. I have Hepatitis C and B. In severe pain every day. Every joint, bone, and muscle I have hurts. It is to the point I would just assume stay in bed all day. I am not the lazy type. Use to be a avid outdoorsman. Hunting, fishing, hiking, rock climbing and rappelling. Now I am unable to do any of these things. My doctor just keeps telling me to take tylenol or aleve. I take around 8-12 500mg tylenol every day to get by. Wouldn't it be safer for him to prescribe me a narcotic pain medicine that I could take fewer of. I don't understand why he won't do this.  

[missy_jasons_girl]

Thank you! This is all very new to me, I really don't know much about the disease besides what I have read so again thanks!

[nygirl7]

Levels of the virus have nothing to do with actual liver damage progression - the only way you can tell is by a liver biopsy which we have all mostly had and is nothing like it sounds like.  My viral load was very low and yet I was almost cirrhotic when I was diagnosed.

You must make sure you do find out and keep track of how much damage you arleady have.  Many people dont experience symptoms until they are already cirrhotic and that makes it harder to get cured of this disease.

You really do need to talk to a hep doctor to start to learn what is going on.  Most general practitioners have no idea about this disease at all even though they think they do. They are quite wrong.

[missy_jasons_girl]

As far as having cirrhosis, I don't have that. I had blood tests lasts Thursday and I was told that the levels of the virus were very low! I do not drink at all, so hopefully my virus won't get but so much worse. And thanks for welcoming me!! :)

[Bill1954]

By the way, narcotic analgesics are generally liver safe, in the event your doctor feels they're indicated for your condition--

--Bill

[Bill1954]

Hi again--

Particularly with known liver disease, you want to avoid things that could worsen your condition. Package directions for acetaminophen limit it's use to 1 gram/four hours, not to exceed 4 grams daily. If you have cirrhosis, you'll want to speak with a doctor prior to use; but generally, 2g/day is okay. Be sure to avoid alcohol abuse with acetaminophen; and you know it's best to avoid alcohol just because of the HCV, correct?

Good luck, and welcome to the discussion group,

--Bill

[missy_jasons_girl]

Hi Bill, thanks for your comments. I actually don't have a GI or a hepatolgist yet. I was put in the hospital for severe distension of the stomach in July and as a result was diagnosed with both diseases. I have no insurance and have just found a low cost clinic that I was able to afford. I do take a lot of Tylenol, probably not at safe levels for my liver, but I am so tired of being in pain all of the time.

[Bill1954]

Hi there,

Sorry to hear you’re dealing with chronic pain. Who is managing your cystitis? The majority of us use Tylenol (acetaminophen) for mild to moderate pain management; often, a primary care doctor advises against using it because in large doses, it can be toxic to the liver. When taken as per recommended dose, it is generally considered safe, and there is no evidence that it accumulates in our body.

We don’t have access to your medical records, so you need to listen to your doctor; however, you might want to discuss this with your liver doctor (GI or hepatologist) and get their input as well.

Good luck—

Bill