much concerned and need help

[salvo]

I have not been around for a while after failing my last trial in Miami. My liver is all scared and I'm sure much worse then 2009-2010 but now My new doctor has put me on Pegasys proclick (180) the usual Rribavirin 1200 mg a day and the new Incivek 750 mg every 8 hrs. I'm close to 70 years old and I guess this will be my last chance as he put it, so I'm very concerned with the outcome and what to expect during this 3 month although I still might be on the old medicine beyond this 3 months. I'm going on my second week on thursday and I'm not feeling too good. My urine has changed color like I never seen it before and I feel bad all over. I'm also taking pills to get this Amonia out of my system and thats one indicator I'm much worse, because I never suffered with this before. Any in-put would be helpful, and if anybody was and is in the same situation would be helpful. Thanks

[tjrusert]

I felt really bad on Incivek. But I got a little better after I was able to just be on interferon and RIBA it still was hard but not as hard. I did tx with just the interferon and RIBA back in 2009 but never had a svr. I did feel really bad again in the last month of tx. I'm finish with tx now and my last blood test showed I was UND. So it was worth the suffering for me. I haven't had my follow up visit yet but hopefully I'm still UND. I'm telling you my experiences so you know what you may expect. Of course, everyone is different. I want you to know you aren't alone. And for most of us, Incivek has been a miracle drug. I hope you feel better soon. Soaking in a warm tub of water always helped my body aches or getting outside if you don't let yourself get overheated. Treat yourself well and drink lots of water even if you don't want to. It helps with all side effects. I hope you don't mind but I did say a prayer for you.

[salvo]

thank you so much,and may God bless you too.

[Advocate1955]

Hi,

My husband did the triple therapy with Incivek, starting the end of last September.  If your liver is already badly scarred, Cirrhosis, you will be on the Incivek for 12 weeks and then, if it's working well, you'll be on the old medicine (Interferon and Ribavirin) for either 36 more weeks after that.  People with Cirrhosis should be on treatment for a total of 48 weeks.

It sounds like you are having some symptoms of hepatic encephalopathy if you are on medication for ammonia.  Hopefully your doctor is a liver specialist (hepatologist), and hopefully he is monitoring you carefully.  Some of the side effects of triple therapy with Incivek include fatigue, flu like symptoms, nausea, rash, anal/rectal discomfort, and anemia.  

Do you have a friend or a family member who can help you out for the first 12 weeks?  You may need help with getting to and from your appointments, grocery shopping, and light work around the house.  

Best wishes,
Advocate1955

[Dawn703]

Have you talked with your Dr. (hopefully a knowedagable hepatologist)about your health concerns? No one can tell you the outcome of your treatment. I can also tell you of my experience with incivek. I too felt pretty crappy the first three months, with the first month being the worse. I lost my appetite on day one, had severe colorectal issues, and rash a couple times. After the 12 weeks with incivek was over, I felt 1000 times better, even with anemia. I have one day until my treatment is over, and I would do it again. I was UND at weeks 4 and 12, I will have my 24 week eot vl done on Thursday. As jrusert indicated, and I can't stress enough, drink lots of water and try to get some light to moderate exercise such as short walks. You don't list any particular side effects, but don't them snowball out of control, speak with your Dr. about them so that they can be treated accordingly. For mild to moderate nausea, I drank ginger ale and used sea bands, I took zofran for more severe nausea, 2.5% hydrochortizone for colorectal issues, and fluocininide for rash. The last three are prescriptions. Good luck and I hope you feel better soon.

[salvo]

I thank you for your replies and most of what you tell me is correct. I have gone through this a few times with the interferon and riba and i feel exactly as you describe. I have talked to my  hepatologist and he explains as you do about most symptoms.I am being treated for hepatic encephalopathy, and it seems to me I dont go enough as I'm suppose to and that worries me and i get lots of pain trying. These pills are suppose to make me go to get rid of the Amonia but I dont think they are working as they should and I will tackle this problem next time. I had never asked if it would be OK to drink one of those laxatives and I will ask on that too. Last trial I was UND right away for the entire year but I'm right back here again so I'm hoping but not counting on it. It took me a while to understand what happened before and if it happens again, I wont be shocked.I guess there has been plenty of people my age and older but its not easy at 67 and its worse then i thought it would be this time around. I feel like I'm getting much worse and even if I get through this, dont know if I'll ever get better as far as my liver. You guys are the only ones that understand even though My wife sees what I've gone through all the years but you understand it better then anyone else. I guess I know what to expect, just needed some encouragement from you. I will be getting blood work after my second shot, so 2 Thursdays from now I guess I'll know more. Thanks for your time.  

[Advocate1955]

So glad to hear that you are under the care of a hepatologist and that your wife is at home to support you and help you.  Please keep posting here so that we can encourage you.  Triple tx with Incivek is much more difficult than the therapies that you did in the past, but with a good hepatologist and support at home, hopefully you can manage the side effects.  I would ask your doctor first about the laxative, because diarrhea is one of the side effects of Incivek, so you may not need the laxative.  Drink lots of water, make sure you get the 20 grams of fat just before taking your Incivek, set alarms to take your pills precisely on time, and put your doctor on speed dial so that you can let him/her know right away about any side effects so that he/she can prescribe something before those side effects get unmanageable.  Good luck and let us know how you're doing.
Advocate1955

[ceanothus]

Oh boy, my heart goes out to you! I'm on week 42 of 48 now, and I feel pretty crummy most of the time, but I still remember weeks 2-3 of Incivek as being the absolute worst. The side effects hit during week 2, and hit like a ton of bricks. Be ready to respond quickly to the sx, as they really do tend to snowball quickly if you watch and wait too long. If you get the nausea enough to feel like vomiting call your doctor ASAP and ask for Zofran. You donor want to throw up your medication! Use a bunch of memory aids to make sure you remember all your meds and take them on time. That is really a challenge! I had multiple safety measures - I kept the pills counted out in different slots of a medication holder and I had an alarm setup on my phone, which I learned to keep in my pocket at all times during the day and on my nightstand when sleeping, then on top of that I also kept a checklist to mark off every dose when I took the pills. The tx does a number on one's memory, and without all those measures I couldn't remember 5 minutes later whether I had taken my pills or not. Read all your food labels carefully for fat content. The quantity of fat required is really critical to the success of the tx, and if you are like me, you will be amazed at how many seemingly high-fat foods really don't have enough fat unless you eat a really huge serving. There are plenty of foods that will provide enough fat in a reasonably small portion, but you do really have to do your research.

Be sure to check in frequently, and especially if you have specific questions or concerns. Good luck!

[salvo]

Thanks for the post and as I said, I was approaching  my second week and all went well. It was so good that I thought I didn't take the shot the proper way so I got worried but to find out I did it right. Beside feeling sick like a dog, at least no flu symptoms this time. I have to go get blood work done tomorrow so I know what going on for the 3rd shot which is on thursday , so I'm keeping my fingers crossed. Some one mentioned about having problems with the rectum, and thats where I'm at now and a rash on my legs, which is very itchy and driving me nuts. Is there anything can be used for one or both? Thanks for any help.

[coeric]

rectum pain - the best things i found were nupercainal and balneol creams. they are sold without a prescription, and i purchased both from amazon.  

rash - the topical prescription ointment that worked best for me was clobetasol,  i also used triamcinolone ointment.  the oral prescription drug that helped me with the itch was hydroxyzine.  finally i was placed on prednisone, after i was pulled off of the incivek at week 10.

blessings
eric

[finishline225]

Wishing you all the best with treatment.  You can track my 2 month success using Pegasys, Ribapak and Incivek treatment.  I was undectable after 2 weeks! Yes, I have flu like symptoms, but surely you'll agree, a very small price to pay.  Hang in there and keep a good attitude.

[salvo]

thanks for the tips on both med. maybe I can get some relief.

[salvo]

Just came back from the doctor,after my second shot and my third shot is tonight, I went from almost 18 million to just 18. Its not the 05 that I used to have with the old shot and riba but that came back any way, and now I feel this just might be the one to help me. My platelets went down from 77 to 65 which i expected worse and my white cells are down too but the doc. said we probably wont need to worry until my fourth shot, so I'm feeling pretty good considering I have a bad rash on my legs and belly. Dont know too much about the rest of the blood work but those few things I know.  Thanks for all the help.

[Dawn703]

Congrats on the vl drop. What is your Dr. doing for the rash? You need to get it in check asap or it will snowball out of control. What is your absolute neutrophil count?

[BoceprevirGal]

  Ah, good luck with your Treatment, I will be hoping and praying for you. Everything looks pretty good so far. I know Incivek has very tough side effects, so stay strong~
  

[Advocate1955]

That's great salvo.  Sounds like you are responding very well to treatment.
Advocate1955

[salvo]

Just looked it up on my BW and the absolute neutrophilos is 3360. says it in range so I guess its ok. Thanks

[salvo]

sorry i forgot the other Question, Desonide lotion 0.05 % and a pill for the itching called hydro-zine hcl. My rash is all over my legs and from what I understand, this is not going to get rid of it just make it feel better.

[pooh55811]

I used Hydroxyzine 50 mg every 6 hours. I also used Fluocinonide ointment topically and clobetesol soln. topically.

I found the key to getting the rash and the itching under control was taking a high enough dose of Hydroxyzine. Low doses help some, but a person needs a decent sized dose to get the rash and itching under control. The drug reaction is systemic and that is what is causing the rash. Therefore a person needs an oral  (systemic) drug like Hydroxyzine. The topicals help, but they only work on the spot on which you put them. And they take a long time to work. The Hydroxyzine works pretty fast if it is a high enough dose.

The Hydroxyzine will work. It got rid of my rash and the itching and I had a serious generalized rash going on (because my treating team had no clue how to treat it). I saw the dermatologist and as soon as I was on a high enough dose of Hydroxyzine, the rash was under control. You cannot see it any more. However, it is lurking just below the skin. If I forget the Hydroxyzine or get too hot then it blossoms.

If you are having internal rectal pain, like crapping shards of glass, firm up your stools. Keeping my stools quite firm was the only thing that kept me from crapping shards of glass. The looser the stool or even the softer the stool, the more pain internally.

[frijole]

18 million to 18 in two weeks is worht fighting for.  I am glad that forum members have been able to give you some suggestions with the side effects.  I was wondering if you are drinking enough water since you said your urine has changed color.  You also said it was hard to urinate.  Often I think that makes people dring less.  See if you can force yourself to drink more water - like a gallon a day.

Your neutrophils look great so far and your platelets - well, they are low, but as long as they don't drop too much lower, you should be fine.  But I bet you know that with all your treatment experience.  Victrelis did drop my platelets moreso than interferon and ribavirin, but I was never as low as you.  I hope you can keep with it.  We know it is hard.

frijole

[Advocate1955]

My husband used Eucerin body wash in the shower, Eucerin lotion after the shower, Hydroxyzine tablets, triamcinolone ointment, and we put tea tree oil on the blisters.  He used to stand in front of the open freezer door or stand outside in the cool night air.
Advocate1955

[Dawn703]

Ask your Dr to prescribe fluocininide if you are able to use it. This will first get it under coontrol and should then clear it up. It's not over night, but the main thing is to not let it get out of control. Did I mention cool oatmeal baths?

[salvo]

Thank you all again for your tips and I will try to see if I can get some of these things without stepping on my doctors shoes. As far as the HYDROXYZINE pills, I take 25 mg and I dont know if I can handle 50mg, because I'm still trying to work and I find this is the best sleeping pill I ever had. ( i do lots of sleeping)----Yes I'm drinking much more water then I ever did and I understand how important that is, trying to force yourself to drink is a problem for me because I in the past only drank when I was thirsty and then I could drink a gallon but trying to drink when you NOT thirsty is not too easy for me but I'm trying. I mentioned my urine once before because I was always used to seeing my pee dark and when I was useing milk thisle it would get lighter but this color was almost like a red and I told the doctor and I believe they want to say its the incevek but it seems like its almost not there but a lighter color from drinking. Oh well thanks again and got to keep my figures crossed.

[jsf52]

You are a true fighter and champion.  The VL drop is amazing.  Keep it up and you will find a cure.  Keep faith.  

[frijole]

I hope someone else chimes in here.  I did not take Incevik but since last summer when Incevik was released I just don't remember anyone mentioning that color urine and I think someone would.  So what could it be?

Red or pink urine
Despite its alarming appearance, red urine isn't necessarily serious. Red or pink urine may be caused by:

Blood. Factors that can cause urinary blood (hematuria) include urinary tract infections, enlarged prostate, cancerous and noncancerous tumors, kidney cysts, long-distance running, and kidney or bladder stones.Foods. Beets, blackberries and rhubarb can turn urine red or pink.Medications. Rifampin (Rifadin, Rimactane), an antibiotic often used to treat tuberculosis, can turn urine red — as can phenazopyridine (Pyridium), a drug that numbs urinary tract discomfort, and laxatives containing senna.Toxins. Chronic lead or mercury poisoning can cause urine to turn red.

Orange urine
Orange urine is hard to miss. Blame it on:

Medications. Medications that can turn urine orange include rifampin; the anti-inflammatory drug sulfasalazine (Azulfidine); phenazopyridine (Pyridium), a drug that numbs urinary tract discomfort; some laxatives; and certain chemotherapy drugs.Medical conditions. In some cases, orange urine can indicate a problem with your liver or bile duct, especially if you also have light-colored stools. Orange urine may also be caused by dehydration, which can concentrate your urine and make it much deeper in color