Fall of 2011 I was on Interferon and Ribavirin, never did get to the Victrelis (13 weeks). Dr. took me off everything because I got very skinny and anemic. Started back on Interferon and Ribavirin. They are adding Victrelis for my hep c triple treatment very soon. Happy but scared. My Dr. took me off Cymbltia 60mgs about 1 month ago, after being on it for about 2 1/2 years. He said it would be better for my liver. Did it cold turkey, (not too bad). Also I have Porphyria Cutanea Tarda (PCT). Which my Hematologist is treating me with Phlebotomy. I am very tired, weak and achy all over. I had to quit working (waitress at a very busy restaurant for over 12 years) I thought I could just MUDDLE though it, but I just could not. My Boss has been very supportive. Some days can be very BRUTAL!! My Dr. gave me tramadol 50MG 4 X daily, but it does not do any thing for pain. What pain meds should I ask for? What vitamins should I take? What foods to eat? What to do when I get the blues? If anybody could help, please let me know your experiences. Sometimes I have to force my self to eat. Would a bottle of Boost be enough to take with Victrelis? What other foods or snacks would be OK? Any insight would be greatly appreciated.
I don't always have the best appetite, it is better in the morning hours. I try to eat smaller meals/snacks during the day. Also incorporate low fat plain Greek yogurt, fresh fruit and honey for breakfast, use this sometimes as a basis for a smoothie (add some leafy greens and juice). I keep trail mix on hand too, good form of protein, when I don't have an appetite. Lastly, I eat more plant based protein (legumes, etc.) In soups.
I'm not an expert, just sharing some things that are working for me. Good luck with treatment.
I always think that if you have more difficult than usual problems with anemia you SHOULD GET A HEMATOLOGIST to support you along with your treatment doc. It could allow you the latitude to be treated for both without being pulled from tx due to hemolysis.
In your case, it probably wouldn't hurt to also seek the help of a nutritionist. Your local hospital should be able to help you find one, possibly even your insurance company.
I was heavily supported during tx by a hematologist and I had 13 blood transfusions plus epo 40 units x 2x weekly the entire time. But. I got through tx and I have been RVR for four years now. I hardly remember some days that I ever had hcv. If I'd only depended on my tx doc I never would have been allowed to complete tx.
Also, I am one of those rare people who (cringe) GAINED a bunch of weight on tx (I've finally lost it now). But since I was so sick to my stomach, all I could tolerate was ice cream. I ate a LOT of ice cream during tx. Prob good with the drugs due to the fat content, not so great for my thighs.
Also, I took a bunch of pain meds during tx. HEAVY pain meds. I no longer take them, but I needed them then. A lot of people on tx seem to take vicodin or similar meds, Dependent upon your LFTs, nice if you can get something w/out tylenol if necessary. Then there is zofran and phenergan for nausea. Also, I think the opiates help the appetite but you have to watch for err... constipation with them.
And any shakes or things that you can get down that add protein and fat are good.
I'm sorry to keep answering in so many bites here, but i keep seeing new ?'s in your post. Interferon can cause depression. It's a fact. Some people need ad's during tx and some people don't seem to have this side effect.
But there is nothing wrong with taking an ad if you need it.
In short, I think there is nothing wrong with using whichever adjunct meds/nutrition/help you need to get through the process. I'm not one of those keep silent and suffer types.
What stage of liver disease do you have? Have you had a biopsy?
Cymbalta should never have been given to you for 2 1/2 years. It is known to be toxic to the liver.
'Hepatotoxicity: Hepatic failure, sometimes fatal, has been reported in patients treated with Cymbalta. Cymbalta should be discontinued in patients who develop jaundice or other evidence of clinically significant liver dysfunction and should not be resumed unless another cause can be established. Cymbalta should not be prescribed to patients with substantial alcohol use or evidence of chronic liver disease.'
Also Cymbalta should never be stopped suddenly. Stopping suddenly can bring on a servere major depressive episode. Anxiety and panic attacks. It is highly dangerous.
You should find a doctor who knows how to treat someone with hepatitis C and liver disease. Whoever prescribed Cymbalta is poorly informed and could have caused more damage to your liver than you already had from hepatitis C.
If you have extensive liver disease (cirrhosis) taking Tramadol, an opiate, that can cause increased symptoms of liver disease and it also will prevent a patient with depression from treating with SSRI antidepressants. MAOI and Tricyclic antidepressants. In other words, most antidepressants.
'What foods to eat?'
Victrelis can be taken with any food or snack.
HIGHLIGHTS OF PRESCRIBING INFORMATION
Effects of Food on Oral Absorption
VICTRELIS should be administered with food. Food enhanced the exposure of boceprevir by up to 65% at the 800 mg three times daily dose, relative to the fasting state. The bioavailability of boceprevir was similar regardless of meal type (e.g., high-fat vs. low-fat) or whether taken 5 minutes prior to eating, during a meal, or immediately following completion of the meal. Therefore, VICTRELIS may be taken without regard to either meal type or timing of the meal.'
You should be seeing a team of doctors that knows how to manage PCT, depression and pain in a patient with hepatitis C and liver disease and who is treating their hepatitis C. You have received poor medical treatment for hepatitis and liver disease so far. Having a doctor that has given you drugs that are toxic to the liver for years to not someone anyone a patient should continue seeing. A misinformed doctor also will be more likely to be unsuccessful in treating hepatitis C as they will not know how to manage treatment properly.
'Fall of 2011 I was on Interferon and Ribavirin, never did get to the Victrelis (13 weeks)'
Victrelis should have been started at week 4 or treatment stopped. Treating for 13 weeks as a waste of time.
'• Initiate therapy with peginterferon alfa and ribavirin for 4 weeks (Treatment Weeks 1-4).
• Add VICTRELIS 800 mg (four 200-mg capsules) orally three times daily (every 7-9 hours) to peginterferon alfa and ribavirin regimen after 4 weeks of treatment. Based on the patient's HCV-RNA levels at Treatment Week (TW) 8, TW12 and TW24, use the following Response-Guided Therapy (RGT) guidelines to determine duration of treatment.'
Get the quality medical care you deserve. Why waste another 24 or 48 treating only to fail again?
I have a very excellent Hematology, She is treating me for Porphyria Cutanea Tarda (PCT) with Phlebotomy. I have only had 2 treatments and go back 1-30 for next. I would like to see if I can do the Phlebotomys more often than once a month. But I guess that depends on my blood levels. I would really like to get the iron levels to almost normal ranges before summer. (Have to stay out of the sun, if I don't, I get sores and blisters).
I will check about a nutritionist. I think I failed first try on treatment because I just was not hungry and did not eat.
I'm really was not nauseous.
Now I make my self eat. I tell myself this is part of meds and I have to take them in order to reach final goal. (CURE)!!!!!!!!!
What type of pain meds did you need to take? I have very high tolerance and most things don't work for me.
If I need them while on treatment, so be it! I do take Xanax when needed.
I am oppose of you, I will not ask for help and think I can do everything and Muddle though it by myself.
Well, I learned that I need to use the support of my wonderful, SON, family, friends, customers from work, Dr.s. and YOU!!!!!!
I'M SO HAPPY YOU ARE WELL AND DON'T THINK YOUR AN AIRHEAD
Thank-You for concerns about me. I was given the Cymblta when I stopped drinking and it helped tremendously.
Stopping the Cymblita after being on it for 2 1/2 years was really no big thing for me (guess I was lucky)
It served it's purpose and helped me through the tough time of stopping alcohol. (Along with xanax)
I have no desire what so ever to drink anymore.
After stopping the drinking I had a routine physical and that when I learned I had hep b and hep c.
That's why they put me on just Interferon and Ribavirin. I could not get approved for Victrelis until hep b was no longer detected.
I never had a liver biopsy and don't know what stage I'm at.
I have app. with the Gastrienterologist today 1-22-13 (Tue) at 1:00pm.
If you have any suggestions for me to ask Dr. please let me know.
I'm just now learning how to communicate with all 4 of them.
D.O. - Gastrienterologist - Hematologist - Dermatologist
You seen to be well educated on these matters and I value you opinion.
This is very confusing, I know I have to be informed in order to take control of treatments.
Just needed to know, are you a Nascar fan? I see the 48 and I think Jimmie Johnson. Well, that's way off the point.
I'm opposite, I'm a night eater. Probably because I have worked in a restaurant for 12 years on the afternoon shift.
(They fed us good and for free)
I never made a smoothie before. It sounds delicious and nutritious.
Maybe you could post me one of your smoothie recipes?
As for the plant based proteins, that would be something I would be very interested in. I love soups.
I have Porphyria Cutanea Tarda (PCT). Which means I have way too much iron in my system. They treat it with Phlebotomy.
I must stay away from iron rich foods, but need the protein.
(I love red meat, and everthing else that's high in iron)
Take Care Dutll48
P.S. I'm no expert either and your kindness it greatly appreciated.
You say you are co-infected with both hepatitis B and C. While it is possible, it is unlikely. Are you sure that the doctor said you are currently infected with both or maybe you were exposed to both?
What experience does this Gastroenterologist have treating co-infected patients with hepatitis B and C? Why would a doctor treat someone before finding out what stage liver disease they have? Is this the same doctor who improperly treated you with peg-interferon and Ribavirin and never added Victrelis? The doctor or doctors that didn't biopsy you and didn't follow proper treatment don't know even the basics of treatment of hepatitis. It is the doctor that treated you with Victrelis that caused to to fail treatment by improper treatment. Patients that treat the first time have the highest chance of treatment success. Failing treatment because of a doctor's ignorance is a waste of money, time, any side effects and lower your chance of curing the virus when you retreat.
Only about 10% of patients with chronic hepatitis B also are co-infected chronically with hepatitis C virus. The two viruses interfere with each other and one usually predominates. If hepatitis C is the predominant infection, treatment is directed against the hepatitis C. Patients infected with both viruses are at higher risk for complications of liver disease. And since you were a drinker, you are at even a higher risk of advanced liver disease. You may also be at a high risk of HCC (liver cancer) if you are co-infected.
With the possible serious health risks improperly diagnosed hepatitis and a history of alcohol abuse I would suggest seeking the best care available in your area. Local doctors have commonly misdiagnosed and improperly treat patients. If you read enough posts you will see that including your own. (Fall of 2011 I was on Interferon and Ribavirin, never did get to the Victrelis (13 weeks). Many times patients are treated by doctors that have no or little experience or expertise in hepatitis or liver disease. We see these patients fail treatment and develop worse liver disease.
There is excellent care for hepatitis and liver disease at the 'Ford Health System' in Detroit. They have a 'Liver Disease Center' that is experienced in diagnosing and treating all causes of liver disease including hepatitis C and B. Why go pay to receive 2nd rate medical services at best, when only 10 miles away is some of the best medical services available in the country? Especially when improperly managed liver disease caused by hepatitis B and C and alcohol can lead to advanced liver disease (cirrhosis) and can be life-threatening?
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