Hepatitis Forums
Advanced Liver Disease Main Forums => Advanced Liver Disease => Topic started by: mobennie on February 19, 2015, 09:35:02 pm
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Hi, all! I was diagnosed with HCV in 2002. Genotype 1A, nonresponder to Peg + Ribavirin combo treatment. Recent FibroSure showed F4 stage (cirrhosis), grade A3 (severe activity). What does "severe activity" mean? Doc has prescribed Harvoni for 24 weeks. Still waiting on approval from insurance company. Have any of you experienced severe itching? I have TORN MY SKIN UP because of the itch. I was prescribed some "magic potion lotion" from a dermatologist, to the tune of $94 for the bottle because insurance doesn't cover topical. Helps for a while and then it's back to itching like CRAZY! If you are having itching, what do you do for the itch? It has gotten to the point of interfering with my work and sleep schedules :-\ Will itching go away after Harvoni treatment? Praying insurance company approves soon.
My numbers:
VL - 1054417, 6.02
Fibrosis Score - 0.89 (F4 cirrhosis)
Necroinflammatory Act. Grade - A3 (severe activity)
Alpha 2 Macroglobulins - 368
Haptoglobin - 28
Apolipoprotein A1 - 86
Bilirubin - 0.7
GGT - 82
ALT - 109
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here is a link about Fibro Test
http://www.biopredictive.com/intl/physician/fibrotest-for-hcv/view?set_language=en
excerpt
Fibrosis
Hepatic fibrosis is a process of scarring through fibrous tissue deposit which results in the destruction of the parenchyma, with the ultimate progressive stage being cirrhosis.
The METAVIR score assesses fibrosis in chronic hepatitis C according to a 5-stage classification:
F0 : no fibrosis
F1 : portal and periportal fibrosis with no septum
F2 : portal and periportal fibrosis with rare septum
F3 : portal and periportal fibrosis with many septum
F4 : cirrhosis
Necroinflammatory activity
The activity (or grade) estimates the lesions of portal inflammation and hepatocellular necrosis.
The METAVIR score assesses the activity according to a 4-grade classification:
A0 : no activity
A1 : minimal activity
A2 : moderate activity
A3 : severe activity
Basically A3 : severe activity refers to degree on inflammation in your liver. Your liver is angry and hurting
Personally can't speak to the itching problem but if the itching is from cirrhosis when hep c is eradicated we may have some improvement in our liver function so it is possible the itching could lessen
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Thanks, Lynn!
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Hey, Bennie , I had had some pretty bad itching at times, but it seems to get better when I watch what I eat, so maybe try to eat only healthy stuff, sorry I can't be more specific, but u know what I mean, avoid as much junk as u can and see if it helps,
Also I'm f4 a3 also, I got approved and start harvoni this week, praying for u also!
Thanks Lynn, you are a wealth of knowledge!
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Well, Harvoni got approved. I am on day 2. So far mainly fatigue/lightheaded and body feels kind of heavy/achy. BUT I am keeping my eye on the prize. Hope this 24 weeks goes quickly!
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I itch during the winter time for years. Probably the dry air. I use benydril pills and cetaphil moisturizing cream. When it warms up I have no problems with itching. Probably moving down the florida keys would solve my problem. Hope yours gets better when it warms up. I'm F2 A3 by fibrosure in november.
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I was itching all year long. I am now on Day 7 with the Harvoni, and it seems like the itching isn't as bad, so I am assuming that Hep is a big contributing factor. I also found out in January of '14 that I have allergies (dog, dust mites, mold, etc.) and never had allergies before. Of course, we have a dog. Anyway, seems like this treatment has gotten the itching to where at least i'm not digging my skin off, so there's that :D
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Skin issues are a liver side effect not Harvoni. Try not to scratch. Take cooler showers or baths, colloidal oatmeal baths and or lotions. Drink Water, water, water. Cool loose clothing. All cotton, no fabric softener, no scents. Cheer free, comes to mind.
Wear cotton gloves if you can't keep your hands off the rash itchy bits. Wash your hands 10x a day. Aloe. If any particular sore is pesky. Clean with betadine, clean socks, beds linens, clothes, all much more than you think are harboring itch. If you could live in a giant white 100% cotton t shirt washed every day on white 100% cotton sheets until it blows over. Do it.
Stay cool. No fake fabrics.
Rash girl. On bocepropvir, riba and interferon I looked like I had poison ivy head to toe.. And inside my mouth.
Still itchy but learning to keep my hands clean and not scratch.
Worst case. If I can't sleep from itch. 1/2 a benadryl. Added benefit, it knocks me ou. No contraindication on TX.
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OH shiz also we had an old old mattress and turned out it had bed bugs!!! now I invested in a memory foam one. But it took all new pillows, mattress and super clean. It is better.Much better.
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Tpropane: Thanks! Looks like we are about in the same boat! What was your beginning VL? I have been using Gold Bond or Sarna lotion after a shower and try to stay in loose clothing as well. The itching definitely is not as bad as it was prior to starting this treatment, so that is a good thing :) Seems like that was one of the first things to resolve, which makes me a happy girl :) Thank you for all the tips!
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Hi
I am new to this board and I am going insane with itching. it has been going on for the past 5 years on and off. I have tried everything! I thought it was hormones, then I thought it was some of my medications, then I thought it was due to my thyroid. I am so glad to see this post! I am hoping that once I start treatment I too will get some relief. I hope to be starting at the end of this month. I go back to my doctor or the 27th for blood test results. I am told I now have CIRRHOSIS along with the Hep C
Hoping I don't scratch my skin off completely until then
(My arms and legs look pretty bad already :( )
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Debula - one of the first things I noticed was that the itching isn't as bad. That was within the first week of treatment. I also went to a dermatologist and had them prescribe some topical lotion. They prescribed something called Cordran 0.5%, which is through Carepoint pharmacy. If you have insurance, you can get it for ... FREE :D
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Debula - one of the first things I noticed was that the itching isn't as bad. That was within the first week of treatment. I also went to a dermatologist and had them prescribe some topical lotion. They prescribed something called Cordran 0.5%, which is through Carepoint pharmacy. If you have insurance, you can get it for ... FREE :D
Thank you! And I am so happy to hear that the itching may get better!! I think that is what I am looking forward to the most. :)
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LOL - believe me, I know the feeling!
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Well, the dreaded itching came back with a vengeance when starting week 4. Ugh!
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ohhh nooooo!!! I was soooooo hoping that treating the Hep c would be the answer. so sorry to hear that :-\
I am beginning to think I'm allergic to bread LOL (Gluten) I don't know what to think anymore
I hope it goes away again. Keep us posted
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Feels like pinching bugs. It SUCKS! I have been tested for food allergies and even went to the dermatologist. He said the itching is because of my liver. So, I hope that it goes away again.
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Wow! I know the feeling! I have been tearing my skin off lately. I am full of scars from scratching. My nails seem to be little sharp knives too no matter how short I clip and file them. This is insane. Hopefully it will go away again for good.
I have been trying to find the reason for years! ...sigh... First I thought it was hormones or lack of hormones, then my thyroid then something I am eating, then the weather, the cat the dog, my thyroid, my liver but I never really thought it was my liver even though I knew that was one of the symptoms. And then I saw this post and though OMG finally I will get some relief when my liver starts to heal. Then I read that Harvoni has actually caused itching for some people... ugh..
Wishing you no itch from week 5 and forever after!
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Thanks and same to you. Gold Bond medicated (in the orange bottle) works wonderfully as well in case you don't want to go to the dermatologist 8)
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:) Hep C 1-A on Solvaldi and Riba Itching myself to death reading your posts about itching. Ripped my earrings out of their holes bruises from itching. Got bad with the Ribavirin. At first it was my scalp but now all over use tons of lotion and oil take allergy pill when I have them. YES HELP Victoria
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Have ya'all been testing for PCT. High levels or Iron. I have bad itching and sores that don't heal on my feet, hands, legs and arms. My Gastro thought that Harvoni and when the liver heals, it will get better. I saw a blood doctor and he suggested 6 phlebotomies to reduce my ferritin level. I am in week 6 and the PCT has bnot become any better. My doc said it may take 6 months AFTER I finish the harvoni. I go though tubes or cortisone cream, cool showers and lots of band aids and I am Stage 2 without cirrhosis, stated 2.5 VL. and after 4 weeks undetected. I have 5.5 weeks left. For me, this itching and sores and bleeding have been the worse part of this Hepc for me. I pray it ends....There's another thread regarding PCT if you can't find let me know and I'll find for you. Its worth reading....
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Hi yall,
Has anyone tried aloe Vera ? Or coconut oil?
The liver is having trouble detoxing the harmful compounds out of the blood,
and you know the diet is where most of the toxins come from, or drugs you may take in addition to the Harvoni, so take inventory of
What you are eating and drinking?
And limit things that you know are questionable...
I have had some itching in the private area that has been crazy bad...
I'm trying to lose weight, I need too, but at 57 I'm no spring chicken...
And find it more difficult to lose weight, but I'm eating a healthy diet...
No red meat, no junk food, no artificial sweeteners , low salt,
Hope we can get over this soon!
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I use Cortisone 10 for the itchiness. Have I have it mostly in the winter months. I recall others like the Gold Bond green label.
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Honestly, I had some itching when my liver count went up but it was mostly only on hands and feet. Now on Solvaldi and Ribavirin the itching started all over but I realized during the winter and being older the skin does get dry so I go through lotion by the bottles. I use jars of coco butter cream after showers and oil and the lotion. It all helps!
I hear drinking lots of water low on spices, no beef low salt and do not bath in hot water all helps. Yes, and to the person who made a statement about feeling like bites yes like low point pin pricks and sometimes in the private area. It is nuts! I have scratched until I have caused tags. Had some removed!
Got some allergy pills for emergency but drinking lots of water now going into month 4 of treatment. I also try to use mind over manner when a terrible itch comes on.
Best to all of you! Victoria 48
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Hi all
How is the itching?
I am on day 8 of Harvoni and I have noticed that my itching has decreased quite bit already. I hope it gets better and better as the days go on.
@ mobennie-How are you doing?
Hope the itch stops for all of us
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Doing okay. Start week 9 on Saturday. So far so good. Itch is tolerable.
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Started week 10 of 12. I have PCT which causes itching and sores on the hands, arms, feet, legs. It is caused by high ferritin levels...iron. My Hep dx said the Harvoni should eliminate it. So far, no change at all. Seeing a dermatologist tomorrow.
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Walt-please let us know what the dr says
I guess it is time to ask them to check my iron. Is it low iron or too much iron?
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How is everyone doing with the itching?
I am at the end of week 4 of Harvoni and my itching is WAY better
(A very noticeable difference)
I hope that means my liver is actually functioning better.
I would love to read the thread on PCT
I hope you all are feeling better
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In week 11. Itching is SO much better now. Still acts up every now and again, but nowhere near where it was prior to treatment. Almost to the halfway mark here - WOO HOO!
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So glad to hear it. What a difference an itch makes in our lives right?
Woo hoo for being half way done
YAY!
How are you feeling?
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Every day is different, but I am feeling MUCH better than prior to treatment. Glad to have gotten rid of that obnoxious itching for sure! I have zero appetite, have to force myself to eat. Drinking Boost Plus, once or twice a day. The insomnia is a little crazy, but doc gave me 5 mg Ambien for that. I take one-half before sleeping. I also have IBS, so the stomach swells and gets crampy, but just so ready to get done with this treatment and see how we do. My FibroSure said I was F4, which is cirrhosis. Doc said it is difficult to tell what stage of cirrhosis without biopsy, but even then a biopsy isn't 100% accurate. He said when I clear the virus progression should stop, so we just have to wait and see. He doesn't want to do viral load and LFTs until I am 12 weeks post treatment, so no idea what my levels are. I may ask for at least LFTs for my bloodwork in June. Debula, we are at the same spot on our FibroSure and VL when starting treatment. Will keep you posted. My platelet count is down to 128 now, but doc says my blood tests are "normal." How are YOU feeling?
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Glad you are doing well. Yes we are the same practically!
I feel "OK" I guess
I realize that most of the sides that some people complain about are things that I have been feeling for years so not much difference. I too have the intestinal stuff going on. Bloating, cramping etc... Don't want to get too graphic haha but I also had these things on and off before TX.
So far tx has been easy.. hopefully it will stay like this to the end.
I am with you about getting a blood draw before the 12 weeks.
I would want to know at least half way through
I am getting my 4 week blood draw today after work. Tomorrow I start my 2nd bottle of Harvoni. (1 down 5 to go! ) :)
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;)
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Started my 17th week today..wow how time flies
My itching is a thing of the past. I never thought I would be able to say thee words!
I hope it stays gone after Harvoni
Hope all is well with everyone
Deb
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Good news, Deb! I take my last pill TOMORROW! Then it's hurry up and wait for the 12 weeks for final blood work! So glad the itching is a thing of the past. That was one of the first things to go for me. Can't wait to feel 100% normal again :)
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YAY congratulations on finishing treatment tomorrow!! Awesome!
You will have to keep me posted about the itching. I hope it doesn't come back
I think if the liver is functioning better then maybe it won't
I hear ya on the long wait but hang in there and time will fly like it does :)
Wishing you everlasting SVR and to be itch free forever!
(People must think we are crazy but OMG the itch was the worst!)
Deb
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Oh, yes - yes, it was. :-\
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Hi, all! I was diagnosed with HCV in 2002. Genotype 1A, nonresponder to Peg + Ribavirin combo treatment. Recent FibroSure showed F4 stage (cirrhosis), grade A3 (severe activity). What does "severe activity" mean? Doc has prescribed Harvoni for 24 weeks. Still waiting on approval from insurance company. Have any of you experienced severe itching? I have TORN MY SKIN UP because of the itch. I was prescribed some "magic potion lotion" from a dermatologist, to the tune of $94 for the bottle because insurance doesn't cover topical. Helps for a while and then it's back to itching like CRAZY! If you are having itching, what do you do for the itch? It has gotten to the point of interfering with my work and sleep schedules :-\ Will itching go away after Harvoni treatment? Praying insurance company approves soon.
My numbers:
VL - 1054417, 6.02
Fibrosis Score - 0.89 (F4 cirrhosis)
Necroinflammatory Act. Grade - A3 (severe activity)
Alpha 2 Macroglobulins - 368
Haptoglobin - 28
Apolipoprotein A1 - 86
Bilirubin - 0.7
GGT - 82
ALT - 109
-
Hi, all! I was diagnosed with HCV in 2002. Genotype 1A, nonresponder to Peg + Ribavirin combo treatment. Recent FibroSure showed F4 stage (cirrhosis), grade A3 (severe activity). What does "severe activity" mean? Doc has prescribed Harvoni for 24 weeks. Still waiting on approval from insurance company. Have any of you experienced severe itching? I have TORN MY SKIN UP because of the itch. I was prescribed some "magic potion lotion" from a dermatologist, to the tune of $94 for the bottle because insurance doesn't cover topical. Helps for a while and then it's back to itching like CRAZY! If you are having itching, what do you do for the itch? It has gotten to the point of interfering with my work and sleep schedules :-\ Will itching go away after Harvoni treatment? Praying insurance company approves soon.
My numbers:
VL - 1054417, 6.02
Fibrosis Score - 0.89 (F4 cirrhosis)
Necroinflammatory Act. Grade - A3 (severe activity)
Alpha 2 Macroglobulins - 368
Haptoglobin - 28
Apolipoprotein A1 - 86
Bilirubin - 0.7
GGT - 82
ALT - 109
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I've been off Harvoni for about a month or so and the itching I have is so intense!!! I have places on my torso where I've almost scratched the skin off. I asked my Dr and was told that itching after Harvoni is not a side effect. I've tried Aveeno lotion, Cortizone 10, cool showers and almost everything else under the sun, to no avail. Does anyone have any suggestions?
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Carmine
My itching stopped about the 2nd week of Harvoni and so far (knock on wood) it has not come back. I totally understand how you feel!!
chgorose67- I am so sorry to hear this- I hope mine doesn't come back. Itching is the worst!!!
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hi there I have had some severe itching in the past. If the itching is from increased billirubin then there is a medication that the gastro can prescribe which was the first anti cholesterol medication (forgot the name) it tasted terrible but worked briliantly. For any itching cold packs are the best thing. It is important to note that the more you scratch the more you itch. Hard to stop i know.