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much concerned and need help
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much concerned and need help

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 (ammonia) 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
130 Comments Post a Comment
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1394098_tn?1385963734
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.
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488823_tn?1218374167
thank you so much,and may God bless you too.
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Avatar_f_tn
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
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2061362_tn?1353283118
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.
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488823_tn?1218374167
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 (ammonia) 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.  
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Avatar_f_tn
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
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1840891_tn?1383280315
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!
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488823_tn?1218374167
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.
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Avatar_m_tn
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
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Avatar_f_tn
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.
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488823_tn?1218374167
thanks for the tips on both med. maybe I can get some relief.
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488823_tn?1218374167
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.
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2061362_tn?1353283118
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?
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Avatar_f_tn
  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~
  
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Avatar_f_tn
That's great salvo.  Sounds like you are responding very well to treatment.
Advocate1955
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488823_tn?1218374167
Just looked it up on my BW and the absolute neutrophilos is 3360. says it in range so I guess its ok. Thanks
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488823_tn?1218374167
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.
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1815939_tn?1377995399
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.
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223152_tn?1346981971
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
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Avatar_f_tn
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
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2061362_tn?1353283118
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?
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488823_tn?1218374167
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.
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Avatar_m_tn
You are a true fighter and champion.  The VL drop is amazing.  Keep it up and you will find a cure.  Keep faith.  
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223152_tn?1346981971
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
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488823_tn?1218374167
sorry i should have never said "red", I'm really talking golden yellow or orange.
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223152_tn?1346981971
salvo
I think perhaps the answer to the color change is either the hepatic encephalopathy or the treatment for it which is usually Lactulose.

From Wikapedia:
"Hepatic encephalopathyLactulose is useful in treating the hyperammonemia caused by hepatic encephalopathy, because it helps "draw out" ammonia (NH3) from the body. It is useful for preventing hyperammonemia caused as a side effect of administration of valproic acid.

Lactulose is metabolized in the colon by bacterial flora to short chain fatty acids including the production of the lactic acid and acetic acid. This partially dissociates, acidifying the colonic contents (increasing the H+ concentration in the gut). This favors the formation of the nonabsorbable NH4+ from NH3, trapping NH3 in the colon and effectively reducing plasma NH3 concentrations.

The effectiveness of lactulose in treating hepatic encephalopathy is somewhat controversial. However, lactulose can effectively be used as secondary prophylaxis of hepatic encephalopathy in patients with cirrhosis. Moreover, recent studies showed improved cognitive functions of cirrhotic patients with minimal hepatic encephalopathy treated with lactulose.

Lactulose is not absorbed, does not affect the absorption of spironolactone and may be used by diabetics. It is used in patients with cirrhosis/hepatic encephalopathy to limit the proliferation of ammonia forming gut organisms and increase the clearance of protein load in the gut.

Lactulose for hepatic encephalopathy generally requires oral dosage three or four times a day with diarrhea and constant flatulence almost a certain side effect"

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163305_tn?1333672171
Lactulose never changed the color of my urine. When I was taking it my urine was a dark yellowish orange, due to my high bilirubin levels.

My doctor had me stop taking lactulose while on treatment. That was my first round, several years ago.
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Avatar_m_tn
Hi, i was also on incevik and my bilirubin did go up to about 2.5 in the beginning of triple therapy.  it did drop back down into the upper normal range about half way through treatment. perhaps you are seeing the conjugated bilirubin in your urine. hopefully it will clear up after a while. you might want to ask your clinician how your bilirubin is doing to see if that might be causing the urine to appear darker than normal.
blessings
eric

the following is from http://en.wikipedia.org/wiki/Bilirubin
Urine
Under normal circumstances, a tiny amount of urobilinogen, if any, is excreted in the urine. If the liver's function is impaired or when biliary drainage is blocked, some of the conjugated bilirubin leaks out of the hepatocytes and appears in the urine, turning it dark amber.
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488823_tn?1218374167
I will be posting again after this Thursdays blood results and I hope the count is 0 but for now I had to tell you and maybe it could help someone else about this rash I had on my legs and belly. I stopped the pill for the itch, because it was putting me to sleep but found this and my rash is almost 98 % better. I took a cool bath every 2 nights and used Aveeno Bath (pretty sure its oatmeal) and this thing works. Just to let you know.
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Avatar_m_tn
glad you are doing better, will keep our fingers crossed for UND. i can second the aveeno bath recommendation.  i also found it very soothing in a cool bath. i would put 2 to 4 bags of the stuff in cool water. you can also try to make your own by grinding oatmeal up in a herb or coffee grinder.  you have to grind it up enough so that the powder is very, very fine.
eric
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766573_tn?1365170066
Wow your rash is 98% better thanks to Aveeno Oatmeal Bath? That is fantastic. I agree the Hydroxizine (and even Benedryl) both work when it comes to itching but they rare both sedating ~ which is OK at night but not during the day.

Still, be sure to keep all those meds on hand in case this happens again.
Hang in there!!
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488823_tn?1218374167
Just came back from the doctor and I'm undetectable ( <5 ) and it seems like I;m doing OK with most other #'s.My absolute neutrophills is  a little low 11.45 and my white cells along with my red cells are low 2.7 white and 3.61 on the red. Dont know what else is important except my platelets are 60. Now the doc tells me since I relapse in interferon and riba , my chances to get fixed with this Incivek is 86 % which sounds great to me but I wonder how many have relapsed on this medication. Of course this probably will be my last time because I'm getting to old to fight anymore but am happy about the chances.Wont get another blood work until before my 8 week.
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2061362_tn?1353283118
This is fantastic news! Glad to hear it, good thought for your 8 week.
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488823_tn?1218374167
Going on my tenth week 10/4 and last week they had to lower my shot because my platelets were 35000. Wont get another blood work until after my 12 week, hopefully I'll still be UND and stay that way.---- I have a question,when the virus is UND, to me it means there is no virus in your system, but maybe I'm wrong. If thats the case,then why does the virus come back as it did to be at least 2 times before. What is it like UND but its still could be in your body and hiding like cancer does and usually hides in the brain?  Just never thought about it and I guess I'm starting to worry.
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1840891_tn?1383280315
First, congratulations on getting down to UND!  As to your question: the virus primarily lives and multiplies in the liver itself, and circulates in the blood as a result of the blood all being circulated through the liver. The problem is that the virus can sometimes hang on in small amounts in limited area of the liver without being circulated by the blood, and this is easier for the virus to do when the liver has more scar tissue, which blocks some of the blood flow. We continue the drugs long after reaching UND to give them more time to reach all of the liver, and people with cirrhosis treat longer, as a rule, than others specifically to add more opportunities for the drugs to reach all of the liver. Even so, sometimes the scar tissue is arranged so that some small areas are not effectively saturated with the drugs, and once the drugs are stopped the virus is very quick to replicate and take over the entire liver again. Those of us with cirrhosis had really poor odds before the protease inhibitors came along. They are very much better now, but still not perfect. I hope we both achieve SVR this time!
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317787_tn?1373214989
Hello, congratulations!  You are doing really well and have received great advice from all above.
I am so happy to hear how you are doing
I finished the same tx you are on now 7 months ago, the virus is gone and I feel better every day
This new drug seems to really be helping people

My best to you
Dee
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2061362_tn?1353283118
ceanothus gave you a very good explanation, but I have to add that there is also a limit to the amount of virus that the PCR can detect, in my case that is 7.1, so even though there is a UND result there could be 7.1 virions hanging out. So that is another reason someone could be UND but relapse. I know we all worry about relapse, but just try to concentrate on a succesful treatment. Good thoughts for your 12 week VL.
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Avatar_f_tn
Yes, I agree with the above, UND means UND, but only to the limits of detection and the limits of quantification which vary from test to test.  Trust, Salvo (doesn't Salvo mean "save"?).  Trust that Incivek will kick out 100% of the virus, and Interferon and Ribavirin will make sure that none of them mutate and multiply!  
Congrats on being UND!!!  Wonderful news!!!
Advocate1955
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488823_tn?1218374167
Next thursday I will be at my 12 week with incevik and I wondering how long after finishing the first 3 months, or do I have to do the next 3 months to see if I'm still UND? Does anybody know the answer to this question? I'm hoping for the best but as you can see I'm worried.
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163305_tn?1333672171
Are you asking how often you should have viral loads checked ?
Normally they would check at 12 weeks. If you want another viral load before 24 weeks ask your doctor. Certainly if you will feel less anxious it makes sense to do another one sooner. Usually people don't have breakthroughs once undetected as often as they relapse after treatment is complete.

Good luck.
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1815939_tn?1377995399
I think I am answering your question, if I understood it correctly.

If I recall correctly, you have cirrhosis.

If you jave cirrhosis, then the protocol/recommendation says you should treat for 12 weeks with Interferon, Riba, and Incivek. After 12 weeks stop the Incivek, but continue the Interferon and Riba for another 36 weeks (so a total treatment time of 48 weeks).

You should have a viral load drawn at 12 weeks. Hopefully it will be Undetectable again. Then you will have a viral load at 24 weeks (or before that if your doctors orders one). Then you will continue for another 24 weeks of treatment so that total treatment time is 48 weeks. The doctor may order viral lad tests more often, but you definitely need the 48 week (end of treatment) viral load test done.

If you remain Undetectable throughout the rest of your treatment time, then you have a good chance of clearing the virus and being cured. A person can still relapse, but if you make it 48 weeks and stay Undetectable, then it looks pretty good for cure.
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488823_tn?1218374167
Yes you hit it on the head, although I didn't think I was going to do more then 12 weeks after incivek because I am someone that  relapsed, but maybe your right,I'll have to find out.Going to get labs day after my 12 week and then going to the doctor 5 to 6 days after that and then we will see.They did say 3 more months after incivek  but I guess that could change. Thanks folks
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2061362_tn?1353283118
Pooh is correct. Yes you are a relapser and UND at 4 weeks, and would normally be doing 24 weeks, but with the cirrohsis, you should do 48 weeks. It is harder to treat someone with cirrohsis for the reasons ceanothus listed above. If it's any consolation at all, you should feel so much better after the incivek is done. Thinking good thought for your 12 week vl.
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1815939_tn?1377995399
I don't want to sound alarming, but being in your late 60s and being cirrhotic, it would be advisable for you and your doctor to do everything possible to ensure that you stay on treatment for the recommended amount of time (48 weeks total) and at the recommended drug dosages. If staying on treatment for the recommended length of time and at the recommended dosages requires rescue drugs such as Promacta for platelets, Neupogen for low neutrophils, or Procrit for anemia, then these drugs should be considered and everything should be done to correct your blood levels without risking treatment failure. You cannot afford to relapse or have a break through. Time is not your friend. It is better to treat successfully now. No one knows when the newer drugs will be on the market so it is advisable to make the most of this treatment.

Having said that, you seem to be doing quite well and I hope you stay Undetectable throughout treatment and I hope you attain SVR (a cure).
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488823_tn?1218374167
Thanks to all of you and I will try to say something without stepping on their feet, but I have a feeling they are NOT telling me all the truth, so I dont get discouraged.
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488823_tn?1218374167
Sorry I'm late about a week, Of course my blood work from 1 day after the last dose of incivek was OK except platelets were 37000 but they already dropped me down to 135 instead of 180 so I guess they will leave me this way for now. I asked about the 48 weeks that I'm being told and it was explained to me that 24 weeks is the same. The difference from getting the right results is almost the same. They seem to me more positive them I think, which make me happy although I still worry. I guess the next blood work is more critical then the last, around the 11/23, so I'll be reporting at that time.
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2061362_tn?1353283118
Does that mean you did not have a 12 week viral load? If not, that is standard protocol for incivek triple therapy and you should of had one done.
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Avatar_m_tn
Well it really boils down to if your ok with only doing 24 weeks as its your choice... Not sure where your doctors are getting their info but that said it's up to you, your the one that is cirrhotic..... Wishing you the very best.

According to the prescribing information, treatment-naive patients with cirrhosis may benefit from 36 weeks of pegIFN/RBV after completing triple therapy, even if they meet the criteria for eRVR. In other words, one may not want to follow the RGT paradigm for this subset of patients, but such decisions should be individualized and should be based on their tolerability and adverse events. However, for patients without cirrhosis who are rapid responders, the entire treatment duration is 24 weeks.
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1815939_tn?1377995399
Your doctor does not want to allow you to treat for 48 weeks, the treatment time recommended for cirrhotics. Your Interferon has already been reduced from 180 to 135 due to low platelets. Plus, you have cirrhosis and you have already had complications from cirrhosis.

I am quite sure that your doc is wrong about  his assessment of treatment and it's outcome. First of all, if 48 weeks and 24 weeks are the same, then the experts would not recommend 48 weeks for certain patients and no one would be treating for 48 weeks. Studies have been done and in certain situations/certain patient populations, the SVR rates are higher if one does 48 weeks versus 24 weeks. This is true for cirrhotics.

I copied and pasted the treatment recommendations and they are as follows:

"Patients without cirrhosis treated with telaprevir, peginterferon, and ribavirin, whose HCV RNA level at weeks 4 and 12 is undetectable should be considered for a shortened duration of therapy of 24 weeks.

Patients with cirrhosis treated with either boceprevir or telaprevir in combination with peginterferon and ribavirin should receive therapy for a duration of 48 weeks."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229841/


Sub-analysis (cannot find what I was looking for, but this will do for now)
"People with cirrhosis achieved a 61% (11 out of 18) SVR in the group that treated for 24 weeks. SVR was 92% (11out of 12) in people who treated for total  treatment duration of 48 weeks."

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Incivek.pdf
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Avatar_m_tn
"People with cirrhosis achieved a 61% (11 out of 18) SVR in the group that treated for 24 weeks. SVR was 92% (11out of 12) in people who treated for total  treatment duration of 48 weeks."

Kinda says it all...
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Avatar_f_tn
  You're doing a great job so far, Salvo, wishing you much luck, with your Treatment.
  At 24 weeks, you and your Doctor can go over your labs together, and discuss the option of your Inf and Riba going longer, to increase your chances.
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Yep results from trials mean nothing, people should just wing it... I agree
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The difference from getting the right results is almost the same. (???)
___________________________

24 weeks 61% people attain SVR
48 weeks 92 % people attain SVR

Since it is not really the 'same difference' I was wondering if there is a reason that is not apparent why your doctor thinks perhaps you could not withstand treating longer?

I agree ultimately it only matters if you are OK with treating 24 weeks. I do think you deserve the chance to make an informed choice.

Best of luck
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It occurred to me that perhaps your doctor is confusing statistics.

If I recall correctly, the difference in the SVR rate between people treating for 24 weeks and those treating for 48 weeks is not very much if a person is Treatment Naive, has lower stage of fibrosis, and is UND at 4 weeks. But that does not apply to you. You are in a totally different category. Your doctor needs to look at the statistic for cirrhotics, not at the statistics for Treatment Naive people who have lower levels of fibrosis.

The problem is, you have cirrhosis. Cirrhosis is a game changer. Cirrhotics are more difficult to treat and they have lower SVR rates. The reason for doing the 48 weeks is to boost your chances for cure.  To me there is a huge difference between 61 %  and 92 %.
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I thank you for all the post and to answer a couple of questions, No I dont know of any reason that I cant go for 48 weeks, and I might have put words in her mouth but thats what it meant to me. She also told me that I should go onto another site which I dont remember the name to get more answers. I always say it my doctor but instead, she is the one that takes care of me and I do believe she is some sort of doctor. In all this time I've seen my doctor 2 times, once to give me the bad news at the beginning and once to congratulate me on UND, but with all this that you tell me I will certainly let them know how I feel before my 24 weeks and if I have a choice, I will go 48 weeks because I dont think I can go through this any more ( feeling sick). Knowing me I probably would be in the 61 %  and I probably would not be SVR. Thanks for all the help.
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I came back with results again and everything looks good including my platelets are up again to 48.my white and red cells are 2.7 and red 4.15 low and bilirubin total is 1.0 and a couple of others are a little low but OK.
I did get an answer to the question on the 24 weeks & the 48 week treatment and it goes like this.The way it was explained to me is if you have Cirrhosis and ( the key word is relapser) and are a relapser and you show UND from the beginning, you are recommended to do 24 weeks, but if you were NOT UND for 12 weeks the it is recommended to go 48 weeks. Dont know where the mix up is and at this point I'm thrilled because they really look more positive then me that I wont get this back, but of course I wonder.Got 8 more weeks to go and I do fell better but as I told my doctor, my liver hurts as before and maybe more. I will be going for an ultrasound next week so maybe I can get some answers on the pain. Thanks folks for all the help and I will report back again.
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"The way it was explained to me is if you have Cirrhosis and ( the key word is relapser) and are a relapser and you show UND from the beginning, you are recommended to do 24 weeks, but if you were NOT UND for 12 weeks the it is recommended to go 48 weeks."

that is different info than i have. i am stage 4 and starting my 12th week with incivek and i have to do 48 weeks. that is the protocol with respect to cirrhotics.  i was und at 4 weeks. i am also a responder/relapser.

did i understand you to say that your doctor said you were to do 24 weeks and you are cirrhotic?

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I believe your doctor is incorrect. It is my understanding that cirrhotics do 48 weeks, period.

"Cirrhotics and treatment experienced patients more challenging, need more treatment"

"Eligible for shorter duration therapy (response guided)
Teleprevir: Relapsers (24 wks)
Boceprevir: Relapsers, Partial Responders (36 wks)

Fixed-duration required (48 wks):
Teleprevir: Partial Responders, Null Responders, Cirrhotics
Boceprevir: Null Responders, Cirrhotics"

This was posted 11/15/2012 so it is current. It is from Clinical Care Options.

http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20Challenge/HCV_Challenge_Slides.aspx

The entire presentation is excellent but go to slide 34 for the info on treating cirrhotics (which I have copied above). Also continue with the next few slides. You will clearly see that the protocol/recommendation is for current cirrhotics to treat for 48 weeks regardless of previous treatment..



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I want to second Pooh's note above. I'm also cirrhotic, and I know the pain of failing treatment (having failed two previous treatments), and it causes me a great deal of concern that your doctor may unwittingly send you down that road by stopping your treatment too early. This particular treatment is so hard to get through that it would be heartbreaking to have it fail because it was stopped too soon. My own hepatologist wouldn't even allow me to reduce my dosages a little bit when I desperately wanted to take a trip but was too sick to travel - he was afraid it might make the difference and we'd both regret it forever. I gave up the trip and stuck with the tx all the way through the whole 48 weeks. I'm now 10 weeks post-EOT and so far it looks like it probably worked for me.
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I am also cirrhotic and recently completed 48 weeks of triple with incevik. this was my first treatment. I was undetected at 4 weeks and remained undetected through treatment.  even though i had the favorable CC IL28b genotype, i was told i needed to do 48 weeks because of cirrhosis.  The hepatologist treating me discontinued incevik at 10 weeks and reduced the doses of interferon and ribavirin due to side effects.  perhaps in the future, when docs have more experience treating cirrhotics, they will feel comfortable in reducing length of treatment for folks like me.   But the drug company's recommendation is that cirrhotics may benefit from 48 weeks.
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Thanks for your input and rather then fight with the situation, I guess I'll demand it before my 24 week, because I too know how it is to fail several times and I think this will be my last.Well 8 more weeks will be the 24th so I need to get ready for the request. Thanks
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My husband is also Cirrhotic.  He was on triple tx with Incivek, and his hepatologist told him that he would be treating for 48 weeks because he was Cirrhotic.
Advocate1955
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Pooh, that did the trick. I faxed him a couple of slides and the link and today I got a call,saying if I want to go 48 weeks There fine with it and probably the meeting in Jan in Orlando is maybe something to do with that. I thank all of you for the help and I will keep you informed.Going on 17
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Good to hear that, Salvo.

Here's wishing you SVR.
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It is so encouraging to see that this forum has positive results for some of the members.  It is also enlightening to see that some doctors will accept information from patients.  Clinical Care Options is an excellent source for current information on Hep C treatment.  Thanks, pooh, for posting the links.

frijole (another 48 weeker)
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Happy to hear you are going to 48 week route!  Sometimes we have to be our own advocates, with the help of forum members, to get the best possible care and treatment.  Good job Pooh for getting that information to him!  

Jules
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Great news Salvo.  I'm so glad that your doctor was willing to accept the information and agree to the extra weeks.  Good luck and best wishes for continued UND at your next viral load test.
Advocate1955
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Besides my hep c, I have a bad case of hearing problems. I've had this for many years and now it seems like it does not get better even though I been putting drops in my ears for over 2 months. I dont remember when I took this med before it affecting my hearing and now it seems like I keep getting blisters in my mouth. I feel like I'm falling apart. Is this related to peg and riba? because its driving me nuts.Dont know what to do on both but I will mention the mouth problem to my hep doctor as soon as I can. Any thoughts on this?
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I don't know about the hearing, I've not heard of tx causing that problem, but the mouth sores can certainly be caused by these meds. I battled them throughout my tx. The best things I found for the mouth sores was: 1) constant drinking of water, and 2) Biotene mouthwash (recommended by my dentist), and 3) Biotene chewing gum to carry along for the rest of the time.  I slept many nights with my sore tongue pressed into a piece of Biotene gum (hoping I wouldn't choke on it in my sleep, but there was no other way to sleep). If you happen to develop painful cracks in the corners if your mouth, those are also common with tx, and usually require an anti-fungal med to resolve. Hang in there Salvo, we are all cheering you on!
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I was reading about Interferon in some brochure by Peg Assist on Friday and I could not get past how in the "Important Safety Information" section it had in bold:

PEGASYS, like other alpha interferons, may cause or worsen fatal or life-threatening problems (like mental, immune system, heart, liver, lung, intestinal and infections). Your doctor should monitor you during regular visits. If you show signs or symptoms of these conditions, your doctor may stop your medication. In many patients, but not all, these conditions get better after they stop taking PEGASYS (see the Medication Guide for more information and Warnings).
_________________

EAR/Hearing
I was just thinking this might be something you have been able to live with but treatment might have exacerbated it.  Is there a way you could see and ENT (Ear, nose, throat doctor)?

Things might improve once you are off the meds but who knows what is really happening right now. I know this treatment has been hard on you this time around and it seems like one thing after another but this sounds like something important you should have a doctor look at.

Mouth sores/blisters:
There are all kinds of reasons for this. One could be as simple as dry mouth. It sounds benign but on the WebMD site it says saliva prevents infection by controlling bacteria and fungi in the mouth. This is one of the reasons products like Biotine that Ceanothus is important.

Here are symptoms of dry mouth:

★ A sticky, dry feeling in the mouth
★ Frequent thirst
★ Sores in the mouth; sores or split skin at the corners of the mouth; cracked lips
★ A dry feeling in the throat
★ A burning or tingling sensation in the mouth and especially on the tongue
★ A dry, red, raw tongue
★ Problems speaking or difficulty tasting, chewing, and swallowing
★ Hoarseness, dry nasal passages, sore throat
★ Bad breath

Besides causing the aggravating symptoms mentioned above, dry mouth also increases a person's risk of gingivitis (gum disease), tooth decay, and mouth infections, such as thrush. If Biotine does not help there is a prescription med that stimulates saliva production, called Salagen.

Either way this is something you might be able to contain if you act now.

Best of luck and i hope you are doing OK♫
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Sorry didn't get back with you sooner but been going crazy. As far as my hearing, I have been treated by a ent for a long time and maybe its worse as you pointed out but I really think it bad sinuses. Getting back to the mouth sores, The doctor prescribed this and its some bad stuff but it worked.It called "magic mouth wash # 12". This stuff if you can handle it, is like washing you mouth with Novocaine and I only used it 4 times and it gone.My insurance didn't pay for it and it cost me 27.00 for approx a pint bottle. My blood is still und and I'm still at 135 dose for peg, and in 2 weeks will reevaluate my new blood work, other wise I doing OK, should be on my 23, 24 week and will go the whole 48 unless I cant handle it and sometimes I wonder. Thanks  
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Way to hang in there!  Have you tried any of the Biotene products yet?  You can buy them at your local Target, Rite Aid, etc.  They are products that help to increase moisture in your mouth, such as toothpastes, mouth spray, lozenges, mouthwash, etc.  I think the fungal infections in the mouth due to tx may be related to the changes in the salivary glands, caused by the meds.  Another thing to watch out for salvo is your teeth.  Because of the dry mouth problem that the meds cause, you can end up with some serious problems with your teeth.  If you haven't seen your dentist in the last 3-6 months, it might be a good idea to go in and get an extra cleaning and check up, even if your insurance doesn't cover an early one.  My hubby had the dry mouth problem and it caused some tooth decay that resulted in a crown (more expensive than an extra check up would have been).  As far as the hearing goes, I think tinnitus (ringing in the ears) can be one of the side effects of meds, but I'm not sure about hearing loss.  Glad you're doing OK.
Advocate1955
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Good to hear from you and hear how you are doing. Hang in there. You are about half way now so on the home stretch.

Agree with Advocate about the mouth and teeth.
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Magic Mouthwash is more to treat the pain associated with oral complications - not really to get rid of them. That is why your mouth was numb. Furthermore you can buy it over-the-counter for less then US27.00
http://www.amazon.com/Revco-Magic-Mouthwash-12-360mL/dp/B006X92XY8
_______________-

The Interferon can cause a decrease in saliva production. Our saliva contains important antibacterial agents that kill bacteria. That is why it is important to keep your mouth moist and increase saliva production.  The link is huge but it is on page 158 of Dr. Melissa Palmers Guide to Hepatitis.

The Biotine is supposed to help with that.

At this point to me it sounds as if you need a two prong approach. #1 The Biotine if the sores are caused by dry mouth or decrease in salivation so you might want to get in the habit of using it either way.

#2 And another preparation to start treating the actual sores. Ask for a mouthwash with Chlorhexidine Gluconate should help. I think it is prescription in America though.

Another mouthwash/gargle is called Betadine. There are several Betadine products so be sure you ask for the mouthwash. I actually think this may be prescription in the US as well.
Here is what it says about it:

Povidone iodine is an antiseptic. It is a complex of iodine, which kills micro-organisms such as bacteria, fungi, viruses, protozoa and bacterial spores. It can therefore be used to treat infections with these micro-organisms.

I have read elsewhere on the forum that Black Walnut Extract can help but have no experience with this myself.
Here is how it is supposed to work:
http://www.compleatmother.com/womens-health/herbs/black-walnut.shtml

There are threads elsewhere on the forum that have remedies to treat the actual sores (in addition to threads to treat possible dry mouth)
____________________

The Biotine is used regularly and consistently might help with the existing sores you have but either way you ought to check this out.
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Magic Mouthwash
Prescription Rx Recipes and Formulas

There is no standard formula for Magic Mouthwash. It's like trying to find the "best" meatloaf recipe; you will find many!

When the pharmacy gets a prescription for Magic Mouthwash, the pharmacist makes each one ("compounds") according to the prescribing physician's instructions or recipe.

Even many health care providers know about Magic Mouthwash, but assume there is ONE formulation and don't know the exact ingredients or proportions. When a prescription for Magic Mouthwash is given to a patient, it must contain specific ingredients, amounts, and patient instructions, so the pharmacist knows which one to make.

Here are some of the more common adult formulations.

--------------------------------------------------------------------------------

Magic Mouthwash Recipe 1

Rx:
•80 ml viscous lidocaine 2%
•80 ml Mylanta
•80 ml diphenhydramine 12.5 mg per 5 ml elixir
•80 ml nystatin 100,000U suspension
•80 ml prednisolone 15mg per 5ml solution
•80 ml distilled water

Sig: Swish, gargle, and spit one to two teaspoonfuls every six hours as needed. May be swallowed if esophageal involvement.

--------------------------------------------------------------------------------

Magic Mouthwash Recipe 2 (also called "Xyloxadryl" or "BMX")

Rx:
•1 Part viscous lidocaine 2%
•1 Part Maalox (do not substitute Kaopectate)
•1 Part diphenhydramine 12.5 mg per 5 ml elixir

Quantity: 120 ml

Sig: Swish, gargle, and spit one to two teaspoonfuls every six hours as needed. May be swallowed if esophageal involvement.

--------------------------------------------------------------------------------

Magic Mouthwash Recipe 3

Rx:
•30 ml viscous lidocaine 2%
•60 ml Maalox (do not substitute Kaopectate)
•30 ml diphenhydramine 12.5 mg per 5 ml elixir
•40 ml Carafate 1 gm per 10 ml

Sig: Swish, gargle, and spit one to two teaspoonfuls every six hours as needed. May be swallowed if esophageal involvement.

--------------------------------------------------------------------------------

Magic Mouthwash Recipe 4

Rx:
•100 ml dexamethasone 0.5 mg per 5 ml elixir
•60 ml nystatin 100,000U suspension
•100 ml diphenhydramine 12.5 mg per 5 ml elixir
•contents of 3 capsules tetracycline 500 mg

Sig: Swish, gargle, and spit one to two teaspoonfuls every six hours as needed. May be swallowed if esophageal involvement.

--------------------------------------------------------------------------------



Here are some other mouthwashes that I've seen referenced, but are lesser known and don't have the measurements listed:



"Dr. Weisman's Philadelphia Mouthwash"
•Contains: Maalox, Lidocaine, Benadryl, water

"Radiotherapy mixture"
•Contains: Maalox Plus, Lidocaine, Diphenhydramine

"Mary's Magic Potion"; "Benacort-Tetrastat"
•Contains: Tetracycline, Nystatin powder, Diphenhydramine, Hydrocortisone

"Stomafate suspension (Methodist standard)"
•Contains: Sucralfate, water, benadryl, Maalox)

"Powell's Suspension"
•Contains: Nystatin, Hydrocortisone, Tetracycline, Diphenhydramine

"Duke's Magic Mouthwash"
•Contains: Nystatin, Hydrocortisone, Diphenhydramine

"Stanford Mouthwash"
•Contains: Tetracycline, Nystatin, 2-Deoxy-D-Glucose, Chlorpheniramine

"Modified Stanford Mouthwash"
•Contains: Tetracycline, Nystatin, Hydrocortisone, Diphenhydramine, flavor, Mouth Kote

"Silegy's Mouthwash"
•Contains: Tetracycline, Nystatin, 2-Deoxy-D-Glucose, Chlorpheniramine, Hydramine

"Daniel's Mouthwash"
•Contains Sumycin, Dexamethasone, Nystatin, Diphenhydramine

Other terms and phrases
•Magic Mouth Gargle
•Magic Swizzle
•Magic Mouth Rinse
•Mayo Mouthwash
•Larry's Solution

--------------------------------------------------------------------------------

Saltwater Mouthwash
•16-ounce bottle of water
•1 teaspoon salt
•1 teaspoon baking soda

Keep a bottle by bathroom and kitchen sinks.
Rinse, gargle, and spit after meals, before bed, and anytime your mouth feels dry or sore.

--------------------------------------------------------------------------------
Premade compounding kits from CutisPharma:
   (more convenient; easier billing; higher cost; less compounding flexibility) •First™ Mouthwash BLM  ◦Benadryl, Lidocaine, Maalox
◦See package insert
◦Company ad
◦Compounding demo video

•First™ BXN Mouthwash  ◦Benadryl, Xylocaine, Nystatin
◦See package insert

•First™ Duke's Mouthwash (in development)  ◦Diphenhydramine, Hydrocortisone, Nystatin

•First™ Mary's Mouthwash (in development)  ◦Diphenhydramine, Hydrocortisone, Nystatin, Tetracycline


Articles:
•Magic Mouthwash Recipes. Pharmacist's Letter/Prescriber's Letter 2009;25(11):251103

References:
•U.S. Pharmacopeia, USP Compouding Background
•Cancer 2007; 109(5): Updated clinical practice guidelines for the prevention and treatment of mucositis
•MASCC Mucositis Guidelines
•Drug Mechanisms in Dermatology
•mouthulcers.org
•ClinicalTrials.gov — "Magic Mouthwash Plus Sucralfate Versus Benzydamine Hydrogen Chloride (HCl) for the Treatment of Radiation-Induced Mucositis"

General Notes:
•USP standards recommend that compounded mixtures containing water have an expiration date of no more than two weeks.
•Avoid alcohol-containing components; they can be irritating to ulcerated mucosa.
•Kaopectate can cause solidifaction problems.
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Well now that I used this magic mouth wash and it seemed to do the job, I will use the biotine all the time and hopefully it wont come back. Thanks
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I'm amazed at the resources you manage to dig up and spread out for the edification of this forum. Bravo, you are incredible, hrsepwrguy!
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Just got an email about something to help with low platelets and I just want you to know I took this for a year and it worked for me but then I also heard, they took it off the market. Now this article is talking about it again, and I wonder why they stopped using it. Its called "eltrombopag"


http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/ClinicalThought/Thought08.aspx
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Just came back from the doctor, and all is good and still und but have a few things either high or low,
Bilirubin--- 1.4 H
white cell-2.3 L
red cell-3.67 L
hemoglobin-12.4 L
Hematocrit- 36.8 L
MCV-100.3 H
MCH-33.8 H
RDW-17.3 HPlatelet-52 L
Absolute Neutrophils-11.22 L

Other wise I'm OK
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Your hemoglobin and ANC look pretty good at this stage of the game :)
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since I have poor hearing cant make heads or tails on this video but I'll guess more added news for us.

http://www.clinicaloptions.com/inPractice/Hepatology/Hepatology/ch8_Mgmt_of_Hep_C_Infection/Pages/Page%207/Subpage%205a.aspx
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Glad to see you're doing so well salvo.
Advocate1955
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Well I was doing well but now I went to the VA and they find I'm in bad shape with lack of VIT D. Oh by the way all my blood work from my hep c doctor is almost the same and I'm anemic because of the med.Getting back to this VIT D problem I asked my doctor if its ok to take VIT D and she said its OK but I just found out I need to take 50000 units for 8 weeks and when looking it up, doesn't sound too good for the liver. Any input on this because I think I need to explain this to my hep doctor. Thanks
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I am taking one 50000 units vit D once per week

I never heard my GP saying anything aginst it. Liver specialist did not say anything against vit D either although we did not discucc the dose

As far as I know it is good. What makes you say that might not be ok? I mean if you gve me couple of references I could discuss them with the specialist
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this came from mayo clinic---------http://www.mayoclinic.com/health/vitamin-d-toxicity/AN02008
What is vitamin D toxicity, and should I worry about it since I take supplements?
Answer
from Katherine Zeratsky, R.D., L.D.

Vitamin D toxicity, also called hypervitaminosis D, is a rare but potentially serious condition that occurs when you have excessive amounts of vitamin D in your body.

Vitamin D toxicity is usually caused by megadoses of vitamin D supplements — not by diet or sun exposure. That's because your body regulates the amount of vitamin D produced by sun exposure, and even fortified foods don't contain large amounts of vitamin D.

The main consequence of vitamin D toxicity is a buildup of calcium in your blood (hypercalcemia), which can cause symptoms such as poor appetite, nausea and vomiting. Weakness, frequent urination and kidney problems also may occur. Treatment includes the stopping of excessive vitamin D intake. Your doctor may also prescribe intravenous fluids and medications, such as corticosteroids or bisphosphonates.

Taking 50,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the recommended dietary allowance (RDA) for most adults of 600 IU of vitamin D a day. Doses higher than the RDA are sometimes used to treat medical problems such as vitamin D deficiency, but these are given only under the care of a doctor and only for a short time.

Although vitamin D toxicity is uncommon even among people who take supplements, you may be at greater risk if you have health problems, such as liver or kidney conditions, or if you take thiazide-type diuretics. As always, talk to your doctor before taking vitamin and mineral supplements---------
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Call your hep or gastro doctor and tell them the dosage that was recommended to you and make sure they approve of it before taking that much. I take 2,000 units per day (per my PCP) and my hepatologist is okay with that - but 50,000 is definitely in the megadose range and you really should make sure that dose is okay. Best wishes!
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Vitamin D Increases Sustained Response to Interferon-based Therapy for Hepatitis C, May Improve Liver Fibrosis

In the EASL study, S. Abu Mouch and colleagues from Israel assessed whether adding a vitamin D supplement to standard hepatitis C therapy using pegylated interferon plus ribavirin could improve rates of sustained virological response (SVR), or continued undetectable HCV viral load 24 weeks after completion of treatment.

Vitamin D is a potent immune modulator that has a direct effect on T-cells and antigen-presenting immune cells, and can directly or indirectly influence the differentiation and activity of CD4 T-cells, the researchers noted as background. They hypothesized that vitamin D has an important role in innate immune response against HCV. In addition, some studies have shown that vitamin D improves insulin sensitivity (a predictor of better treatment response) and inhibits HCV replication.

The investigators first measured vitamin D levels in a group of 157 chronic hepatitis C patients treated at their liver clinic in Israel, and found that fully 84% had low levels, and one-third had "severe deficiency."

They then performed a randomized study of 67 patients. About half were men, the average age was 48 years, and most were of Russian origin, with only a few being of Israeli or Arabic origin.

Participants were randomly assigned to receive 1.5 mcg/kg pegylated interferon alfa-2b (PegIntron) plus 1000-1200 mg/daily weight-adjusted ribavirin for 48 weeks, with or without 1000-4000 IU/day vitamin D3, enough to bring serum levels up to 32 ng/mL. By chance, patients in the vitamin D group were more difficult to treat than those in the control group, having a higher body mass index and larger percentages with high baseline viral load and advanced liver fibrosis.

Results

44% of participants receiving vitamin D achieved rapid virological response (undetectable HCV at week 4), compared with 18% in the control group (P < 0.0001).  
94% of participants in the vitamin D group achieved complete early virological response (undetectable HCV at week 12), compared with 48% in the control group (P < 0.0001).  
85% of patients in the vitamin D group achieved SVR, compared with 43% in the control group (P < 0.001).  
Adverse events were mostly mild and were typical of those associated with pegylated interferon/ribavirin (mainly flu-like symptoms).
No serious adverse events were reported.

These findings led the investigators to conclude that adding vitamin D supplements to pegylated interferon/ribavirin therapy for treatment-naive genotype 1 patients with chronic HCV infection significantly improves SVR rates.

They further suggested that vitamin D deficiency may contribute to the strong racial/ethnic disparity observed in responses to antiviral therapy for HCV. People of African descent -- and to a lesser extent Latinos -- do not respond as well as whites and Asians to interferon-based therapy.

People with darker skin produce less vitamin D when exposed to the sun, and are therefore more likely have low levels. The 2000-2004 National Health and Nutritional Examination Survey (NHANES), for example, found that U.S. non-Hispanic whites had average vitamin D levels nearly 10 nmol/L higher than those of Mexican-Americans, who in turn had average levels more than 10 nmol/L higher than non-Hispanic blacks.

Treatment Response and Fibrosis

In the second study, published in the April 2010 issue of Hepatology, S. Petta and colleagues from Italy looked at the association between vitamin D levels and histological and virological response to interferon-based therapy.

Adding to the mechanisms described by Abu Mouch's group, the study authors noted that vitamin D also can potentially interfere with inflammatory responses and fibrogenesis (formation of fibrous scar tissue).

This study included 197 patients with genotype 1 chronic hepatitis C and 49 healthy HCV negative control subjects matched according to age and sex. Most of the hepatitis C patients (167) were treatment with pegylated interferon plus ribavirin.

Levels of 25-hydroxyvitamin D were measured using high-pressure liquid chromatography. Tissue expression of cytochrome P450 25-hydroxylating liver enzymes (CYP27A1 and CYP2R1) were assessed in 34 hepatitis patients and 8 control subjects.

Results

Serum 25-hydroxyvitamin D levels were significantly lower on average in chronic hepatitis C patients compared with healthy control subjects (25.07 vs 43.06 mcg/L; P < 0.001).  
Lower vitamin D levels were independently associated with female sex and liver necro-inflammation.  
Levels of CYP27A1, but not CYP2R1, were directly related to vitamin D levels and inversely correlated with necro-inflammation.  
Independent predictors of severe liver fibrosis or cirrhosis (stage F3-F4) included:  
  
Liver necro-inflammation (OR 2.235);
Older age (OR 1.043);
High ferritin (a protein that stores iron) (OR 1.003);  
Low cholesterol (OR 0.981);
Low 25-hydroxyvitamin D (odds ratio [OR] 0.942).

Overall, 70 patients (41%) achieved SVR.  
In a multivariate analysis, factors independently associated with poor response, or failure to achieve SVR, included;
  
Lower 25-hydroxyvitamin D (OR 1.039);
Lower cholesterol (OR 1.009);
Liver steatosis (fatty liver) (OR, 0.971).


Based on these findings, the study authors concluded, "Genotype 1 chronic hepatitis C patients had low [25-hydroxyvitamin D] serum levels, possibly because of reduced CYP27A1 expression."

"Low vitamin D is linked to severe fibrosis and low SVR on interferon-based therapy," they added.

http://www.hivandhepatitis.com/2010_conference/easl/docs/0518_2010_b.html


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Caution: Hepatitis C and Vitamin D Deficiency

In addition to dietary recommendations for liver disease, a significant portion of people with the Hepatitis C virus (HCV) take vitamins and herbs to support their liver. Despite this trend, American researchers have confirmed that living with chronic Hepatitis C is usually accompanied by a vitamin D deficiency. Worried about the consequences of a vitamin D deficiency, those with the virus may choose to supplement with this vitamin. However, vitamin D is toxic in large doses and taking too much of it could end up being more harmful than not having enough.

About Vitamin D
Vitamin D is a fat-soluble vitamin that helps the body absorb calcium and plays a crucial role in the growth and maintenance of strong, healthy bones. A lack of vitamin D causes calcium-depleted bone, which can weaken the bones and increase the risk of fractures resulting from osteoporosis. While vitamin D is probably best known for its role in bone development and maintenance, it’s also involved in the brain, immune and reproductive systems. A lack of vitamin D can cause osteomalacia in adults and rickets in children, both of which are unwelcome additions to the burden of chronic liver disease.

Vitamin D is found in food, but can also be produced in the body after exposure to ultraviolet rays from the sun. Some forms of vitamin D are relatively inactive, with a limited ability to function as a vitamin. The liver and kidney help convert vitamin D to its active hormone form. But for those with advanced liver disease from Hepatitis C, a deficiency can conceivably develop from the liver’s inability to convert vitamin D into its active form.

The Research
Presented in October 2008 at the 73rd Annual Scientific Meeting of the American College of Gastroenterology, researchers from the University of Tennessee in Memphis measured the vitamin D levels in people with chronic liver disease. Of those evaluated, 85 percent of the study participants had chronic Hepatitis C. After dividing every vitamin D deficiency into three categories (mild, moderate and severe), the investigators found the following:

92.4 percent of those with chronic liver disease had some degree of vitamin D deficiency
At least 33 percent of participants were severely deficient in vitamin D
Severe vitamin D deficiency was more common among those with cirrhosis
Lead researcher Dr. Satheesh P. Nair commented, “Since deficiency is common among these patients, Vitamin D replacement may hopefully prevent osteoporosis and other bone complications related to end stage liver disease.”

http://www.hepatitis-central.com/mt/archives/2008/10/hepatitis_c_and_11.html

I would talk to my liver doc about the recommended dosage
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Salvo, I would not worry about that

Toxicity and calcium build up will happen only when vit D is in excess

18 months ago I was under the lower limit with my vit D. I took for 24 weeks a one per week 50,000 units tablet and when I started tx I was having a healthy value, but only mid range really.

The idea is to monitor the vit D and check it maybe every 12 weeks, Also check your calcium. I would not be very concerned as you have a low value will take really long time to have it normal to start with



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I'm on my third pill of vit. D 50000 units per pill, and I do feel better but really dont know if it was depleted from the med I'm taking. I just passed my 31 week and I'm still UND, just hope and pray I will be in my 48th which should be around July 11. I guess 4 to 6 weeks after that I should know if it came back or I beat this SOB. thanks
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Good to hear from you, Salvo. And really good to hear you are still UND. Looks like about 16 weeks to go. You are doing great. The longer you stay UND, the better, as you know. Here's wishing you UND for the rest of Tx and then SVR!
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I'm 54 years old and 12 weeks in to treatment at 8 wks it was UD and  all I can say is at my age its not good for me either be strong Salvo you can beat this thing my neighbor was your age when he went threw treatment for hep c GNO 1  8 years ago and is still virus free my Dr's have said vitamins can help and as I have always taken a good reg of vitamins I'm sure I'm ahead of some of that. Good Luck have faith and live long young man
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Well I'm still UND and I have 9 more weeks to go and I feel like BLA, but no matter what, if good new or bad, at least I have to fell better then I do now.Wont know until AUG. some time to see if I beat this thing and I will keep you guys informed one way or another. Thanks for all the help.
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I hope your doing OK and yes your not a great age too but it beats 68. As you get older, its hard and I've done this at least four times with all bad results but this time I feel a little different.I'm keeping my fingers crossed.  I hope it works for you.
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I'm reading some of these old posts and I am grateful for all the help and knowledge. At this point because of reading some old posts, I was reduced to 135 on the shot for a long time now and just recently was reduced to 800 mg on the riba from a 1000, so That worries me a little that never went back to the required amount, but hey I'm still UND so I have to be happy.
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Good to here from you, Salvo. And really great to here you are still UND. 9 weeks to go, on the home stretch for sure now. That time will go fast, at least it did for me. You will feel better once you are off treatment.

I am so glad you are keeping us updated and we all want to here when you attain SVR. Here's wishing you SVR.  : )
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Hi Salvo

Going down to 800 at this stage is not aa huge problem so no need to worry
I think once UND is achieved and also once Incivek is finished, dose reduction is not something to worry about, especially if it is minimal

I do not think that right now this will change in any way your success. you have done really well so far and things will be good more than likely

Fingers crossed  :)))
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My last blood work was about the same, not too much of anything, still UND and am hoping it will stay this way. Going on vacation tomorrow morning and four more shots to go. Last one on 7/11/13, what a day, to celebrate.Didn't  pick it by choice but I'll be happy when its over.See you soon.
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It is so cool how you have kept this thread going throughout your treatment. You have come such a long way and now you are almost finished! Hang in there and keep us posted :)
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This is july 15 2013, and I have been off med for 4 days, since 7/11/2013. The way I can explain it, I've been on a flight for a year and I've just landed. Why I've put it this way is because I'm really not feeling too good and hoping its just the long flight.----- For a few months before it ended, I have been getting these low grade temperatures, that even the girl that checks them asked me if I dont feel good. ( from 88 to 100.1), Now that I have completed this 48 weeks,I'm going for blood work on the 26 and the doctor Aug.1, so I guess I wont know too much for another 2 or 3 months. My Question, is why am I getting these low grade fevers? and if they are related,when are they going to stop ?
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Congrats on crossing the finish line, Bravo!
Now, I know that Interferon causes low grd fever, and that Interferon takes at least 3 days to clear our systems, so hopefully this sx will be gone in another couple days.
   Everybody is so different, for example, I would feel tired and achey (achy) after my shot, and would feel as if I had a low grd fever, but it didn't show up on the thermometer. We all have our own way of dealing with(and responding to) Interferon, as we manufacture it in our bodies, etc
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"Now, I know that Interferon causes low grd fever, and that Interferon takes at least 3 days to clear our systems, so hopefully this sx will be gone in another couple days. "
--------------------------------------
Interferon remains in the body for up to 6 months. Therefore any side effects from Interferon may not be gone for several months.
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Congratulations on finishing Tx! You had a difficult treatment and it is wonderful that you have finally completed it.

Treatment can take some time from which to recover. The drugs stay in our bodies for up to 6 months. They will be eliminated gradually and as they are eliminated the side effects from them should disappear as the days go by. Hopefully you will feel better and better each day. I know my side effects gradually disappeared, but it took months.

You mentioned going for blood work on the 26th. You should have a viral load now. You should not wait until the 26th. There is supposed to be an end of treatment viral load done right after you finish treatment, such as the day after you finish treatment. If you have not had an end of treatment viral load done yet, please have one done ASAP. This is very important. You need to know if you are UND at the end of treatment, which is now. So please get a viral load done ASAP, today or tomorrow. Call your doctor for the order if you have to, but please get one ASAP.

Hopefully you will be UND and remain that way. However, IF the virus does reappear, you will need to know if you were UND right at the end of treatment. It is the only way you will know if you had a breakthrough or if you have relapsed. Hopefully you will be UND at end of treatment and stay that way, but your doctor needs to follow protocol and get that end of treatment VL now just in case the virus reappears. IF it reappears, it COULD reappear as soon as 2 weeks after end of treatment and, without an end of treatment VL you would not know if you were UND at end of treatment or not, and therefore would not know if you had a breakthrough or a relapse. This is very important if you do need to treat again in the future.

Hopefully you will stay UND and that will all be mute, but one has to be prepared for anything.

As far as the low grade fever, it could be from the Interferon or it could be something else. I think your doctor is going to have to follow up on this and if the fever does not disappear, then the doctor should do a thorough work-up/exam with tests, to determine the cause so it can be treated.

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i have not been around much- but i remember seeing your posts a ways back!
congrats on finishing a hard run!!!

i am praying for you and your wife that you are healed and that you two will have some good times ahead.

hopefully you will have SVR and your liver can begin to heal. the meds are strong but your body can recover after the virus is gone- you will have so much more to work with!

you are a warrior!
Jerialice
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I'm sure the dates got screwed up because I was not coming back from vacation until the 21 but today as most said and POOH, I went for blood work and my doctor gave me no problem when I told them I wanted to get my lab done. I know I got a viral load and Ammonia check because I did have a problem with this before.---------- One problem I never mentioned is the EYE problem. I had them checked by a specialist about a month ago and after he checked inside and behind the eye, he said all look good.I told him my eyes have been bothering me for at least 4 months and he said to water them often.Well this is not doing too good but its better then nothing. The problem with my eyes is I keep getting styes, but before this med I never had a stye before but now it seems like I get every month and they hurt, even if I put drops every day. Is this from the MED too? Man I hope this goes away too because this is not good with hurting eyes all the time. Thanks ALL  
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The meds can cause dry eyesand so can Hepatitis C. I had dry eyes, felt like sand in them all of the time, before treatment. My eye doctor put me on Restasis and had me take the Restasis all through treatment. This worked. It is prescription, but it works much better than the regular eye drops, especially the stuff you get over the counter. So maybe mention Restasis to your eye doctor.

Did you tell your eye doctor you keep getting styes? Treatment could be causing you to get them more often. Hopefully now that you are off treatment they will stop reappearing. Still, if you have not told your eye doctor, I would tell him/her. You may need an antibiotic if you keep getting them.

http://www.webmd.com/eye-health/understanding-sty-treatment

Glad you had your lab work drawn. Let us know the results. Wishing you SVR.
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Hi there! Congratulations on finishing tx,  I had very dry eyes all through therapy, like Pooh said it felt like sand in my eyes.  I used eye drop every day several times a day.
Finally a year and a half after tx my eyes are much improved.  I also had my eyes checked and was told they were fine.
I hope that yours gets better as time goes by.
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Came back from the doctors today after lab, and found still UND but have a few things that still are off like, White and red count low, hemoglobin low,hematocrit low, platelet low,AN and AL low, but with all that, I do feel like its going to get better because I feel better. My urine is not dark and after I failed a few times, it got dark soon after but this time it seems better. Well I guess I know a lot more in 9 weeks for my next app. Thanks for listening
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Third time's a charm this ones yours!!

Bob
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Congrats on remaining UND!  What a victory!
Advocate1955
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Great that you are UND. Congratulations!

Hopefully as the days pass you will better and better. Please keep us informed. We do care.
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Just want to thank all of you for thoughts and prayers, I'm grateful to have such caring people on this site.
Just got my results back since my last blood test and have not taken any medicine for 3 months, All my tests are in the BLUE and still UND and even platelets are up to 90 which is very high for me. I guess this MED worked and I'm happy as can be, and no more struggling with taken this medicine any more.I have been feeling much better although it still hurts but with scaring I guess it will. My doctor told me I should have a check again in 11 weeks, so  now that I'm relieved that should be no problem. I'll check in from time to time and at the moment I trying to move to another state so I'm all tide up. Again I thank you all for being so kind.
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Good to hear from you Salvo and glad you feeling better.  Excellent news on the 3 mo post tx UND!  Off to SVR land :)
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Wonderful news, Salvo. It is great that your lab is improving and that you are still UND. Being UND at 3 months post end of treatment gives you a 99.7% chance at SVR, which is exceptionally high. Best of luck. Wishing you SVR. (Keep us posted.)
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You've made my day with this news, I truly am so very happy for you!
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Congrats on remaining UND 3 months after treatment.  I think you are on the way to SVR!  Yay for you!
Advocate1955
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Sorry for not being on so much, but I just moved to Georgia, and dont have much time because of the move. I need to get checked around dec. 20, or so and wondering if anyone knows a doctor to finish up with my last test. I'm in the cumming area 30041, and I'm checking "north forsyth Hospital" for doctors but cant find any that treats HEP C. Thanks hopefully you can help
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There are gastroenterologists in Cumming, but if you want a hepatologist you may need to go to Atlanta.  Which do you prefer?
Advocate1955
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I guess a hepatologist is what I'm looking for although I thought some one from the area could recommend someone near me.Atlanta is too far away, "maybe 75 miles" thank you
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Hi Salvo,
Maybe someone else from Georgia will answer your post.
I found the following:

Dr. Muhamad K. Obideen, Gastroenterologist
1100 Northside Forsyth Dr., Ste. 200
Cumming, Georgia
770-781-4010

Dr. Hetal A. Karsan, Hepatologist
1100 Northside Forsyth Dr., Ste. 200
Cumming, Georgia
770-781-4010

Advocate1955
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Congratulations! It sounds like you have it beat. Any doctor can order the VL test.
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Thank you guys
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Good luck salvo
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Hi you guys, This is an update for all of you and I'm happy to tell you after 6 months from my last dose, I guess I'm SVR because they told me everything looks good but I'm still trying to get copies of my tests, to see what the #'s are. I know it doesn't show on the Virus but really need to find out on platelets and other #'s so I can feel relieved. Now from what they tell me I need to keep getting checked on the scaring of my liver from time to time and of course I'll be 69 soon so who knows what will be. I just want to say thanks to all of you for forcing me to go the distance instead of the original plans. THANKS, THANKS, THANKS.
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This is truly fantastic news. In fact, this is the best news I have heard in a very long time. Congratulations!

You had so much against you and you persevered and made it through against all odds. That is truly commendable. And it paid off.

Enjoy your new Hep C free life.  : )

As far as checking, yes, since you have Cirrhosis, you need to be monitored by a Hepatologist every 6 months for Hepatocellular Carcinoma. I am sure you probably need other monitoring as well and hopefully some others who have Cirrhosis will chime in on monitoring when one has Cirrhosis.

Best of luck going forward.
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First congrats on gaining SVR. As for follow up testing because you do have cirrhosis besides being screened for HCC if you were DX with grade 1 varices one should also have And Upper GI done at times along with LFT blood tests............. Wishing you the best.

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Congrats Salvo!  Way to push through :)
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Super congratulations Salvo! I'm SO HAPPY for you. Welcome to the SVR club and best wishes for your good health to be resurrected - hopefully quickly, but do try to be patient, as it usually is a slow process to heal after what we've all been through. I'm just so glad you made it. Hugs!
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Big Congrats on attaining SVR

Wishing you all the best
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Congrats on attaining SVR!  I am so happy for you.  Check with your doctor, but as others have said, you should see your hepatologist about every 6 months for ultrasounds or CT scans to screen for liver cancer, and also for lab work to make sure that your liver is working well.  You should also stick with a liver friendly diet, no alcohol, and avoid medications that harm the liver. You have Cirrhosis, so take care of your Hep C free liver salvo.  Thanks for coming back and giving us this good news.  I think of you often.
Advocate1955
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