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Post Info TOPIC: Hi , I am a newbie !
laughinggull


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RE: Hi , I am a newbie !
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Thanks ! I'm glad to hear the brain fog is clearing for you, wow, that would be worth it right there !



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laughinggull


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Thanks for the feedback. I had an ultrasound last summer which came back normal. I know that is not a definitive test and I have had a normal liver biopsy but that was maybe 5 yrs ago. My insurance denied me last summer that is why I was asking about Medicare. I would buy a very good supplemental to go with the Medicare benefit. I have genotype  1A.



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Pablito


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Hi LG

I have had HCV since 1996 or 97.  For the majority of that time I was symptom-free aside from a slightly toxic feeling and the brain fog you mention.  However, it's most likely that as you approach the 15-20 year stage that liver problems will ensue; and that has been exactly my experience: in the last 2 years I have developed fatigue and my recent fibroscan indicated fibrosis at F2/3 (my previous biopsies were all F0)...so I would strongly encourage you to seek treatment.

I hear your views about medication.  Having been through the God-awful side effects of interferon/ribavirin, I found it very hard not to associate HCV treatment with side effects, but I am 4 weeks into a trial of sof/vel/GS9857 (which is similar to Harvoni) and I have had no side effects...none at all.  In fact, I feel better than I have done in years.  The brain fog started to disappear after just one dose and was gone altogether in 3 days.

As has been mentioned already, these drugs have only been around for a few years so it's impossible to know if there will be longterm effects.  But you will almost definitely get worse effects from untreated HCV.  Unlike interferon/ribavrin, which act like a sledge hammer to the immune system, the new drugs act directly on the virus itself so I suspect there will be no longterm effects.

Hope that helps and your insurance company approve treatment.  Living in the UK, it makes me angry even thinking about having treatment blocked by insurance companies. 

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.
Tig


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Hello LG,

Our member and Moderator Matt Chris posted that article on the Neurologic effects, etc. I agree, it is a very good article. 

There are many here on Medicare that have requested treatment and they can be very demanding where approval for these treatments is concerned. They have been getting better, but there are a lot of financial constraints being imposed as well. With the costs of this medication and care ever increasing, the money runs out fast. All providers, private and government agencies have been clobbered by costs and demands. United Health (AARP secondary) is pulling out of the Obamacare exchanges due to near trillion dollar losses. My suggestion to you is if you have insurance now that will cover the treatment costs, do it. It's better to get it resolved sooner than later regardless of condition. You can't rely solely on your enzymes anyway. We've had people with normal or slightly elevated ALT/AST's and had advanced fibrosis. The best indicators are the Viral Load and Fibrosis staging, in addition to all other markers.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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laughinggull


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I hadn't gotten back on the website to see the responses ! I thank all of you for your support. I am out of the country so I don't have all of my figures with me like viral load etc. I return to the US early June and have a Dr. apt scheduled soon thereafter to discuss tx options. I probably will have to appeal as I was denied last summer and I still have the same insurance. I am 64 so my other option is to wait until next year and see if Medicare will pay. I am going to get a very good supplemental as well. Does anyone have experience with Medicare ? A lot will depend on how my liver enzymes look too. Thanks for the posting someone did on Neuro SE with Hep C, the brain fog is a real drag !!

 

Thanks again !!!!!



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RAGDOLL


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RE: Hi , I am a newbie !
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Welcome Newbie,  you have come to right place.  I too was scared to try treatment and had the virus over 40 years.  The treatments in the past where very harsh but the new ones and the newer ones just around the corner are very easy to tolerate.  As mentioned by others to have more data on your genotype and viral load would be good as well as how long you have had the Hep C etc.  As Wendy said even if your labs are pretty good this disease progresses as we get older.  Waiting too long can cause other complications .     Many knowledgable people on forum to help you with your decisions.   Ask questions and getting the knowledge ....is best tool for your future health.  Best Wishes and again welcome to the forum family.  



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F 63,  1b  1974, no cirrhosis, fibro scan 5.8 F0-F1,fibro test .37 ,V/L 702987, ALT 90, AST 75.  ABBVIE Topaz II on 10-30-14 Viekira Pak no RIBA , EOT 1-22-15 SVR, ALT 37, AST 29, 4-15-15 SVR12 - fibro test .22,  1-21-16 SVR 52 ,  1-21-17 SVR 104! 1-21-18 SVR 3 years ,2020 5 years, 2022 7 years!
JimmyK


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Greetings,

It's Christmas morning and the young child rushes down the stairs to see what is under the Tree. There lays a beautifully wrapped box and it has her name on it.

The large ribbon and Bow beg to be pulled off and the wrapping paper to be torn and tossed aside to reveal the mystery within.

The child just stares at the box and as beautiful and inviting as it is stands before it frozen not moving a muscle while taking slow and deliberate breaths.

The Father asks, "Aren't you going to open it?"

The little girl slowly and quietly nods her head.

The Father and the Mother are both a bit taken back, looking at each other with expressions that denoted their complete dismay.

"What is the matter", asked the Mother.

The little girl responded quietly with, "what if it is not exactly what I wanted?"

The Father responds, "what if it is?"

"I'm scared that it might not be."

So the box sat there, for years and years until one day the woman who had from that little girl grown old finally decided to open the box. When she did she saw that it was exactly what she had dreamed for and of and she quietly smiled yet now too old to enjoy the prefect gift she had longed for so many years before. As a little girl the gift would have provided much happiness but now a simple reminder of happiness lost and never known.

Accept the gift while you can and understand that there does come a time when an unopened gift can no longer be enjoyed.

 

Welcome to The Family.

 

JimmyK

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Linuxter


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Hiya LG,

Welcome to the forum, you've come to the right place.

We're glad you're here. We're a close knit bunch, very family-like and now you're part of the family smile

The more folks here know about your diagnosis and condition the more they (we) can help.

So do let us know your age, liver condition, Viral Load, Genotype etc, it will benefit you if we know more.

IMO, there is absolutely no reason (other than waiting for a specific drug to come out, in some cases) to not get on the bandwagon and get treatment for HCV now. It's a great time to get treated, there are some very effective and easy to take treatments out now, very unlike the not too distant past.

Waiting can only result in worsening liver conditions and IMO there is no downside to getting on treatment now.

Many of us have had HCV for 40 years or more and wish that these wonderful new drug would have been available years ago and would have jumped at the chance to go through a relatively easy treatment and cure. Many of us felt no symptoms at all, even though our livers were being damaged.

Do what you have to do to get treatment now. You may need to jump through a few insurance hoops (it's entirely worth it, believe me) or even appeal if denied. There are also many drug trial available with very effective results.

There is treatment available for all who are determined to get treatment.

Post some info about yourself, about your diagnosis etc and ask lots of questions here, we will be here to help you every step of the way.

So Not to Worry, all of us have been right where you are now, many of us are also very sensitive to taking medications so we know where you are coming from but getting treatment is easy now days, thanks to  many like the true veterans here who have been through earlier, much rougher treatments.

You can do this and I recommend you learn and become familiar with all of the above. Lots of great resources here and lots of friendly people to help.

 

Be Well,

Dave

 

 



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
wendyo


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Hello there Newbie,

I cannot speak for everyone, but for me, as I get older and approach menopause, I believe those are reasons for my continued brain fog. The Harvoni is out of my system for sure. As folks age, the minds ages too lol so I would not say that the brain fog gets worse from the treatment...just natural progression of living life.

We have talked about allergies, I know I spoke of my eyes being red from allergies and that's cause I live in FL, nothing to do with HCV. 

My biopsy is not that bad and my enzymes were elevated. I am an F1 but failed 2 prior treatments so I was approved. As HCV is a slowly progressive disease, it is recommended to treat it even if you have good scores/counts. 

Let us know a tad more info about yourself if you are comfortable doing so.

 

Wendy



-- Edited by wendyo on Thursday 28th of April 2016 07:17:49 PM

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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
Sydhanrahan


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Hi Newbie,

these drugs are relatively new. We hope there won't be long term side effects - few have been reported so far, but at the moment no one can swear there will be none.

What science does clearly show is that failure to treat chronic Hep C will almost certainly result in liver deterioration. I have had it for 40 plus  years and elected not to take interferon with its known side effects. By the time these new drugs became available i had decompensated cirrhosis. I'm not sure how much you've read yet but it means the liver is damaged to the extent that it's difficult to lead a normal life, chances of liver cancer are much higher, no real proof that liver recovers from this degree of damage. 

So that's basically the choice - to say definitively these new drugs wont have long term effects you'd have to wait for studies which will be done in the thirties, forties and fifties. 

I know relatively little about treatments and liver function compared to most long term members here. Wait to hear what they say - they may disagree with me - but for me there was no real choice  and i would say the same thing to younger people who still have healthy livers.

good luck, Syd

 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
Tig


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Hello LG,

Welcome back! I'm glad you're here. Brain fog is a very common complaint and the good thing is it generally improves after successfully treating the virus. I wouldn't be concerned about that and wouldn't let it prevent me from seeking treatment anyway. Not treating will allow these issues to continue on a negative course. I'm not aware of any allergy issues arising post treatment. It's far easier

If you have any additional information, it will help us reply to your specific questions. Do you know your genotype and level of fibrosis? Any information will be helpful. Do you have any current blood tests you can share? AST/ALT?



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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laughinggull


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HI,

 

I have been on this website many yrs ago. I was dx 10 yrs ago. I opted not to do tx as my liver enzymes were normal and my liver biopsy was normal also. Last summer my enzymes creeped up barely above normal. I applied for Harvoni and was denied by my insurance co.  I  am considering trying again for approval for Harvoni.

My main symptom is brain fog and some tiredness. Upon reading the symptoms people are reporting, it seems many people did not get rid of the brain fog or else it worsened. That worries me as I have a severe case.

Any suggestions ? It sounds like there may be some other new symptoms that appear like allergies post treatment ?

I am anti-medication so I am scared to take anything. Not sure if I should wait until more data is released about long term side effects and symptom relief.Thanks, it is so nice to have a place to go to ask these questions from people who have been through this !

 



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