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Hep C Discussion Forum -> Post Treatment -> Memory and Disorientation Post Harvoni tx
Post Info TOPIC: Memory and Disorientation Post Harvoni tx
biminidave


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RE: Memory and Disorientation Post Harvoni tx
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Friends keep telling me that just because I have disease A doesn't mean that every condition I might face in the next year is directly associated with it.  Comorbidities are sometimes really tough to sort out and treat so for me the best thing to do when faced by something that isn't very Hep C-ish is make an appointment with a doc that's equipped to handle my symptoms. 

You might get an idea about what's happening in your brain by visiting the local neurologist?

So far I'm dealing with a PCP, a dermatologist, rheumatologist, GI, pain specialist, and a neurologist.  I certainly wouldn't want my Neuro to prescribe for the GI, or the pain specialist to step in for the Derm and try to treat my skin condition.  I'd really rather have my PCP take care of everything like they did when I was a kid back in the 50's, but that isn't going to be happening again anytime soon.

Hope you get better soon.



__________________

Age 64 Geno 1a  Diagnosed 11/14/14 with 6.3 mill VL after 40ish years of infection.  Harvoni tx started 8/15.  SVR12 Feb 4, 2016  Last appt with specialist was told to have my gp order metabolic testing once or twice a year because his services weren't needed any longer.  Still happy dancing.
Matt Chris


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Wow Obsessing

These are very serious conditions your are having. They are very similar to TIA's symptoms 

A transient ischemic attack (TIA) happens when blood flow to part of the brain is blocked or reduced , often by a blood clot. After a short time, blood flows again and the symptoms go away. With a stroke, the blood flow stays blocked, and the brain has permanent damage.

Ask your doc to test for TIA's , hopefully you can work around these issues

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Bills


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Hi obsessing

That does sound pretty bad, And a lot of have said this to some degree. Question is what is it? MY feelings When a doctor can point at the initial illness as a reason for something they'll say that and stick to it. Examples Cry o-globulin  muscle aces joints big time fatigue fluid in my calf's and feet  Hep C docs say goes with the territory and common in cirrhotics. Went to rheumatoid doc. he agrees I have cirrhosis the cryo is not at level he sees all the time so he wouldn't treat me for Cryo- with cirrhosis not much he can do except call it fiber mialgia? The most effective relief i have with the heaviness in legs and feet etc is compression socks the good ones are about $20.00 a pair.

The Brain fog is it Ribavirian Inteferon The trail Harvoni ? I don't think they want to go that route ( are they then liable ) is Gilead trying to avoid it also? to sell the Hep C cure ? So I go to a gastro doc  

because i came across  Hepatic-Encephalopathy    (HE)   He gave me  XiFaxan it is very expensive ( they DO have coupons for copay ) But I really didn't see much difference so I stopped I'm still in la la land. and I still have the fatigue. Both Doc's basically says I didn't think you had HE. Note   Hepatic-Encephalopathy  (HE) is real for people with cirrhosis but when it comes they say its a-lot worse  than we are stating. I haven't found anyone that don't blame all this on cirrhosis. Some day they may get around finding out if it was our Anti viral Drugs or Drug use or alcohol? But the system won't bite the hand that feeds them Not yet anyway

I still believe that my Hep C group at Cornell has been doing the best they can for about 8 years. I believe they do our best interest in making sure we don't over medicate our damaged livers. They  don't want to a lot of trial and error they want to keep us alive and to keep our own livers . We are in a real rock and hard place.

BillS  



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

JimmyK


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Greetings.

My concern is the following;

"I'm taking other medication but have stopped a few days to see if I could isolate it to just one and that experiment failed."

Respectfully I don't feel it is wise to stop any medications without a Doctors consent. Those of us here certainly cannot condone or recommend that any of our family here takes such steps independent of Doctors orders.

That is why they get those neat little White Coats so please by all means seek professional advice and in cases where you do not feel comfortable with what you hear, get other professional advice also known as a second opinion.

 

Regards and hang in there!

 

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."
wmlj1960


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Hi obsessing.

 I'll be interested to see if your condition improves given more time. I can relate to the symptoms you describe. I have terrible attention deficit issues and very poor short term memory. I just completed 24 weeks Harvoni on Jan. 7 and I'm hoping to see some improvement in the future, hopefully near future. I can't blame this all on Harvoni though, that I'm pretty sure of. Mine may be partially due to the Sovaldi / Ribavirin treatment from 7-14 thru 1-15, or to 30+ years of heavy alcohol / IV drug use, or according to my psychiatrist, to a form of PTSD after a near death accident involving a broken back and several other badly broken bones, 2 limb amputations, and a 9 month recovery process at a sub-standard nursing home with poor healthcare. But I have been taking the Harvoni the whole time since I 'escaped' biggrin that nursing home last August and moved into my own apartment. Since shortly after I started living here, eating healthy, staying adequately hydrated, taking all my medicine on a proper schedule, I, and people who are close to me do see an improvement in my cognitive issues. So based on this experience, I doubt Harvoni has been the caused of them and also is not preventing my recovery from them.

 I'm glad you can see the humorous side and joke about this because that may be the exact thing that helps you keep your sanity and some peace of mind. My psychiatrist also commented that I have an exceptionally good attitude towards all that has happened and the way I keep an attitude of gratitude for still being alive is my best asset for living a happy life with what I have. Whatever happens, whether Harvoni post-treatment side effects improve further or not, I hope you can keep your humorous spirit alive and know that but for the Harvoni, you would still have an HCV problem to add to life's challenges. Hang in there and I wish you a happy continued recovery. Keep us up to date in the future. smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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obsessing


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Thanks for all of your support. I'm taking other medication but have stopped a few days to see if I could isolate it to just one and that experiment failed. I'm trying to see the humorous side of this and joke around about it. That helps sometimes. I'm just really curious if anyone else has any sort of cognitive issues. 



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46 year old male, DX March 2015, Gen type 1a, Harvoni TX started 3 months July-September 2015. SVR 4 months now.

 
dharmabum


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Hi obsessing,

Your post-Harvoni experiences sound very frightening indeed.  While you cannot force your doctors to be better practioners, you can find new doctors that are.

Best of luck,



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Joann

 

Geno 1a  - failed Tx Inc/Int/Rib - Tx Harvoni 1/14/15 - UND at EOT 4/7/15, 7/7/15, 9/9/15, 12/04/15, 10/26/16
MikeH


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Sorry to hear about your issues. I finished a 12-week Harvoni course on 10/28/15. I had moderate memory issues like those you describe (perhaps not quite as pronounced) before my treatment, but haven't experienced a notable change since completing the Harvoni. In fact I'm not sure that there has been a significant change in my state of body or mind post-treatment other than the increased tinnitus I and others are experiencing. I'm hoping I will see more positive changes (increased energy especially) in the coming months. You seem rather young to be experiencing age-related memory changes, is there any history of such problems in your family? Are you sleeping okay?



-- Edited by MikeH on Wednesday 20th of January 2016 06:14:08 PM



-- Edited by MikeH on Wednesday 20th of January 2016 06:19:43 PM

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61 yo, GT 1a, liver F1-F2 pre-treatment.

Diagnosis circa 2000. tx naive till 8/6/15, Harvoni tx initiated 8/6/15 through Gilead's Support Path. 28day labs: virus "und." Sides mild. EOT 10/28/15. EOT liver enzymes normal range: AST 25, ALT 18.
Tig


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Hello Obsessing,

I'm sorry to hear about the cognitive problems. It sounds like you're having quite a time with it. If you're not getting any answers with one doctor, you need to see another, perhaps an Internist and or Cognitive specialist and get some answers. 

Be aware that you are still fairly early in your post treatment period and recovery takes time. Some are just now feeling back on track, after a year. So you may want to wait a bit longer. We are seeing improvements in most people in the first 6 months, but nobody is the same. It's important to concentrate on treating yourself well during recovery. A good diet, hydration and some exercise do wonders. Rarely do the improvements happen overnight, but they happen.

New research from the ongoing studies are providing insight and solutions to these new protocols, but you have to be sure you report these issues to the FDA and your doctor. At least one that's willing to listen! Good luck and please let us know if we can assist you in any way. 



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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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obsessing


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I'm almost 4 months post treatment (3 months Harvoni) and happy to be virus free. When I stopped treatment, I felt a wave of energy but quickly developed cognitive problems. 

My short-term memory is very bad and I'm disoriented at times. I can't remember entire conversations, appointments, eating meals, reading, where I parked, etc. My family is worried because I've become very repetitive and forgetful. I'm functioning at a much lower level than before the virus. There are also times when I don't know what day it is or where I'm driving. I'm having trouble writing and spelling. I can't form the letters or forget how to spell a word. Easy words. I've never experienced anything like this.

I'm very scared. Both the memory issues and disorientation are horribly scary and I don't know what to do. I feel like I'm going crazy. Work is very difficult and I've already been fired once and am now desperately trying to hold onto my current job. I saw a psychiatrist who prescribed me ADD medication but it doesn't seem to be helping. It does help with concentration if I can remember what I'm concentrating on.

Please tell me that I'm not alone. I'm scared that this won't get better. The doctors tell me they have never heard of anyone with these symptoms. 



__________________

46 year old male, DX March 2015, Gen type 1a, Harvoni TX started 3 months July-September 2015. SVR 4 months now.

 
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