Hep C with cirrhosis

[julu49]

Do those of  you who have found out you have cirrhosis after treatment, have bad back aches? I'm not blaming the Harvoni for my cirrhosis but it did become another disease on my already long list of problems. and some I know are from Harvoni.
The question is,  how many of you with cirrhosis have back pain? Do you take OTC
meds for pain? I feel guilty every time I take something but it's pretty painful and debilitating. I know they are bad for the liver, but what do you do? Thanks All,
judy

[Lynn K]

Hi juju

Sorry to read of your back pain. I was diagnosed with cirrhosis Jan 2008 after being infected with hep for probably 30 years at that point. I am now more than two years post my 24 weeks of Harvoni with 15 weeks of ribavirin treatment. I had an aggressive treatment due to being a 4 time treatment failure (3 with interferon based meds). Anyway as of now I was diagnosed with cirrhosis 9.5 years ago. Never had any back pain I could not explain from too much yard work and being in my very late 50's.

Have you asked your doctor about your back pain do they have a diagnosis for a cause?

One great thing for back pain is physical therapy for strengthening of back muscles.

As far as pain relief pain management for those of us with cirrhosis is very problematic. The reason is because NSAIDS like Aleve and Advil can cause an increase in risk of bleeding. Have you had an upper endoscopy to check for esophageal varicies? Those are enlarged blood vessels in the swallowing tube (esophagus) which can become enlarged enough to cause a serious life threatening bleeding event. This is the reason why people with cirrhosis need to avoid NSAIDs.   I have been advised that if I need to take pain medication I should take Tylenol. When properly taken at correct dosing Tylenol is the recommended medication for those of us with cirrhosis as there is less risk of bleeding.

Do you know what your platelet count is. Is it below normal? How were you diagnosed with cirrhosis? Do you know your MELD score?  Are you under the care of a hepatologist associated with a liver transplant center? Not to say you need a transplant but doctors like that are best equipped to follow patients like us with ESLD (end stage liver disease)

Good luck I hope you find help for your back pain.

[julu49]

Thank you! You asked a lot of good questions. I do have my Meld score. It's 9 and I don't have varices so that's positive. I have the Child Pugh score also but I can't access it right now. I've had hep see since....let me see, 68 now so, yup 50 years.
I also have a very severe case of chronic pancreatitis. Doc told me the gland no longer works at all and is being replaced by fat. Yes, I'm diabetic too. I am worried about the pain in my back that I have never ever had in my life because of those 2 things. My ex called me years after we had split. A real war of the roses, and asked me to come and get him. He had horrific pain in his back. He gave me the virus. I  said no and good luck, I'm happy and clean. He died only a few months later. Also the pancreas lays accross the back. My pain is horrid already and now this> Not including sides form Harvoni TX. Do you sleep a lot too? I sleep about 14 hrs and am still exhausted. Sorry so long. Thanks for your caring.

[julu49]

Hi LynnK, you asked what my platelets were so, 211 with a range of 140-400,
Sounds pretty good. I just wondered in a nutshell if anyone else had unexplained back pain. Thanks, julu

[Lynn K]

Hi

I don't recall anyone specifically complaining of back pain but maybe someone will come by. Low platelets are often the first symptom of cirrhosis. Before treatment my platelets were about 85 with min normal at 150 after I was cured they rose to about 110 better but still below normal.

As far as tired well I work a lot and am doing college on line so like last night I went to sleep very late and have to go to work early so going through today with 5 hours of sleep. But when I have te chance I do get extra sleep sometime I do a 10 hour sleep to catch up.

You didn't mention what your doctor has said about your back pain. Back pain is such a vague symptom and could be so many things you really should seek your doctors opinion. Even if someone here does have back pain it may or may not be related to your symptoms.

Kind of surprised you said you got hep c from your ex. In general hep c is not considered to be an STD I think you would be the first person I can recall who contracted hep c in that way. Although hep c can theoretically be contracted sexually it is thought to be very rare in the setting of long term monogamous couples.

Best of luck hoping your doctors can fine a solution to your back pain

[julu49]

Thanks for your response. So do you feel any better now that the treatment has cured you? I don't know why I have the back pain but am pretty sure it's to do with the pancreas. The reason I asked is because of my ex and how painful that was for him. Not lower back pain that is so horrid it shoots down your leg and is truly debilitating, mine is left mid back.  My doc is a pill. She refuses to talk to me about my illnesses and would rather push me into taking Neurontin for my Neuropathic foot pain. Too many pills.  Thanks again.

[Lynn K]

Too be honest I have never really felt bad just maybe a bit tired but I often push myself too hard.

 Psychologically, I feel much better knowing hep is no longer harming my liver as I was expecting at some point to decompensate and be in need if a liver transplant or die without one. Now I have a new lease on life with the hope to live a normal life span and hopefully die from something other than liver disease and failure which is not a good death (that is if there even is such a thing).

Also, I don't have the fear of accidently infecting someone else if I get a serious bleeding cut  and somehow expose them to the virus.

Are you seeing a hepatologist associated with a liver transplant center? If you don't like your doctor is changing physicians an option for you?

[julu49]

Hahaha! I don't like my doctor either. I do have a wonderful who takes care of my liver and pancreas. I wish I could just go to see him. He is the one who got me on the Harvoni. I've not have a symptom in well...since I first got it. At that time I was horribly ill. My liver enzymes probably ALT were over 2400. I was bright orange and weighed 72 lbs. I spent awhile a week or so in the hospital and about 6 months at home recovering. I was so sick. I can truly imagine how it would be to die that way. I felt fine after about a year and went on with life until Harvoni. I'm grateful to be cured but I still have sides. Oh well, I'm glad but skeptical. I have to thank you for reminding me of all of that so that I can be grateful and go on with life. I'm pretty much stuck with that gatekeeper doc. Maybe..... Thanks again.