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Hep C Discussion Forum -> On Treatment -> Lost my mojo
Post Info TOPIC: Lost my mojo
globetrotter


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RE: Lost my mojo
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Gracie

Thanks for that Im really pleased the Docs seem to listen and take the side effects seriously, I agree with the sleep...I wake up feeling more tired than when I go to bed!...I feel slightly better after ranting on here but have an overall feeling of a coiled spring that could unleash at any point .. and I think that I will see what they can give me. For the thrush which I had really badly on the Incivek we use Daktarin and I hope not to have it...ever again!

Ill let you know what my nurse says on Monday and anything for a more stable mood wink

Have a chilled out weekend will be thinking of you!

 



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Gracie


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hi Sally,

So my doctor told me by all means take anything that will help you get through this treatment and make my life easier. She said the Anti depressant should improve my mood and energy level and should be no issues stopping once treatment is done since the mood swings are medication caused. And sleep is very important while your fighting this disease so she approved of the sleep aid as well (as needed for that one). She even gave me a prescription for the magic mouthwash in case I have any thrush or throat problems. Feel much better just talking to her, although she did tell me to stop going out in public because my ANC is .57 and my platelets are only 50. But heck, how was I to get my prescriptions? I will try to go out less I guess.

Here is what she gave me:
Effexor (anti depressant) smallest dose 37.5 mg to start
Serax (sleep aid) 15 mg tabs with instructions to only take half as needed
Nystatin (oral rinse and swallow) if needed for mouth sores or thrush.

So this person who use to take no pills now feels like a pill junkie...lol. Whatever gets you through the night.... It's alright ... It's alright!

Hope this works ....

__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
dustbear


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Yup, sounds like a familiar tune to me too.

Music made me cry like crazy so I enjoyed absolute silence.

I enjoyed listening to the birds outside.

A cup of tea on the front steps sitting in the sunshine was a good pick me up.

Oh, and this forum brought me up when I needed it the most.

You can do it with a little help from your friends!



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
Hep-C Dragon Slayer


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When you get that feeling and only we all know what that feeling is, you have to get your mind lost into something that distracts the bad and takes you away from the tx mentally.  

No one outside the tx family really knows or understands, to them life must go on.

I agree with April when she said Netflix,  that seemed to work for me.

54 episodes of Breaking Bad, House of Cards and The Followers plus some old dumb movies even watch a documentary on Michigan Fire Fighters !  This seems to help me in those dark times and through the insomnia.

Once I put the earphones on and stare at the Kindle screen, I get removed from the bad feelings, the no mojo, the just down times the I feel crappy times and before you know it, a new day has started.

 

Give it a try......



__________________

GT 1A:  VL: 4,695,000, started treatment 1/6/13 with off label Sovaldi/Olysio/Riba     No Interferon due to Sarcoid  in liver and lungs.  Recent biopsy shows Cirrhosis level 5/6.  EOT 3/30/14. SVR 8 on 5/30/14
smccune


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YEP..YEP....All comments sound so familiar...

Gracie...the work, home, pj's etc. I totally understand.  I feel the same, but it won't last forever.  That's what I tell myself everyday when all my friends are out having a good time.

I spent 2 wks during tx constantly crying over everything.  I got over it and moved on to a new side effect.  My 28 yr old son made the statement that he could count on 1 hand the amount of times he had seen me cry until now...and I was a single mother of 2.

Water, comfort food and xanax are my best friends....lol.  and the couch of course.

It is just so wonderful to not feel alone in all of this crap.

I don't know if I would have made it this far without all of you and your empathy and encouragement. 

So hang in there everyone!!!  We are all going to get thru thisbiggrinbiggrinbiggrin



__________________

55 yo female.  Diagnosed 9/2011 Geno 3A.  Treatment delayed because of 9 Month antibiotic tx because of TB Positive test. Began tx 9/20/2013 Interf/Riba 24 wks.  Week 4, 8 undet. 1 year.......UNDETECTED!
ucbgal


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sally,

here's my 2 cents. i tried ad's  & then switched to therapy !!!! she got me through this & assisted me during the grieving process as well.

journaling, finding this forum, excersising, watching old movies/dvd's , listening to my favorite cd's and looking over my photo albums really worked for me. 

with everyone's tips you'll be climbing out of the fog/bubble soon!!!!!

treat yourself well!!!

sandy,ucbgal



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globetrotter


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Jim

B***y tears are so random aren't they...just talking here has really helped me get a grip...I have a hospital app on Monday and I suspect they will monitor me until my 24 week Viral load in April to see if I need AD's as if Im still detected Im off treatment anyway.

Appreciate your advice and glad your are still undetected..cant wait to have the feeling everyone is describing on clearing these little beggars!

Got the cyber hug Loopy Lisa!!!

Best wishes Sally

 



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
globetrotter


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Gracie

 

arent we just...you summed it all up, even the dry eyes. I had just started travelling the world when this was picked up and stopped me in my tracks and to see that the world is carrying on whilst we are 'in this bubble' is very frustrating and not being able to exercise is really tough! I keep telling myself how lucky I am to be on treatment with a chance of clearing it!!  I also have a 20 year old who is a freshman over in the States who is getting on with his life and forging ahead. Let me know how you get on....feel some retail therapy coming on again (bank balance will be groaning). Im sorry to her about your pomeranium, I absolutely love dogs and when I can have 2 Bassett hounds that belong to my friend who are the best therapy

Big hug x



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Loopy Lisa


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I am sorry to read this, I hate that people have tough times on these medications. I can only offer a cyber hug, it doesn't do much, but I feel you. Take care and give yourself the time and love to get through this, bit by bit the days will count down and you will be the other side. Rooting for you!

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
JIme


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I cried my eyes out while on triple tx. I'm still a big cry baby but no where near like I was on tx. I kinda miss it to be honest with you...lol
( I'd like to think I'm a big tough macho pacho guy....wrong!!!!! )

My Dr monitored me for AD's and she felt I didn't need them. Looking back I probably should have taken a wee bit of something. I got used to feeling kinda crappy during tx and it never got to the point where I was going to quit but when I stopped tx that's when I saw how down I was while on tx. It was like a fog was lifted. I made it but I wonder if it would have been better for the people around me had I taken something.

I tried to write everything down while on tx. Appointments, conversations at work, Dr's visits, med times, everything. Even what I ate. This helped immensely.

I took naps after work almost every day and I drank a lot of water. And I talked to other people who had been on tx. On here and on the phone. I think that was the biggest thing that helped me get through. I had a friend who was on int/riba for over a year. He talked me through many days when I felt really crappy.

In the end it was all worth it. I feel better today than I have in years.

This is doable and you can do it. Keep sharing your thoughts and fears and talk to your Dr. You'll be ok.



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
Gracie


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Hi Sally,

We really are a lot alike. I've been struggling with no mojo. Besides this treatment, my 20 year old daughter moved out and is too busy with school and her new boyfriend to call (no, not bitter), my little pomeranium who is my princess has heart disease and not doing well, I'm frustrated that my friends are still living, going to dinners, running, traveling etc., and I'm trapped here. Work, home, pjs, tv, bed. Get up and repeat.

So anyhow, I have made the decision to get the AD and a sleep aid. I've never been on them before, certainly don't plan on staying on them after, but just can't handle these mood swings, tears, sadness all the time. I think we need this. This treatment is hard enough without crying all the time. My eyelids are so dry from the meds, it actually hurts to cry...lol.

Im going to my dr tomorrow and will let you know what I get and how it works. It's just something we have to accept. Like shopping... If it makes us feel better .... Let's do it ... We'll do it together!

Gracie


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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
globetrotter


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Wayne its certainly a strange feeling ...i've hit a wall which I can't go through, so (due to weakness and tiredness) Im going to take a little trot around it with a leg up if I need it from the wonderful people on here and my family and friends!!!

Rebeca a great analogy..thanks for the hug

 

Take care

 

Sally

 



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
OldenSlow


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Sally,

I can't even imagine what this must be like for you. I declined Interferon-based treatment for 13 years because I felt in my gut I'd never make it through. I have nothing but admiration for you and all the others who have undergone this nastiness.  Even minus your mojo, you are stonger than I ever was. Stay strong!  Be well!  Mojo be back.  smile

Regards,

Wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
rebeca


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Hi Sally,

This treatment is like a tree with bitter roots but sweet fruits.
 You will reap the sweet fruits, and you will be happy living HCV free.

These negative feelings will pass. Do not forget that you have a goal, and you're gonna get.

A big huge

 



__________________

52 yo. Genotype 1a. 1.500.000 VL. Fibroscan : 8 . Probably I infected in 80s. I´ve never been treated. I've started Harvoni, 9/02/2015. 12 weeks. 
globetrotter


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Guys..what can I say

Thank you for your input...I have a regular app on Monday and will ask about AD's they use Citalopram here..I think I have confused the drug induced with the emotional and need to be more objective and realistic.........the fight is back on ...round 2!!

It warms the ****les of my heart with the support here  (and no tears writing that) biggrinbiggrin

 

Sal



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Tig


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Hi Globetrotter,

I can relate to your feelings and understand the desire to avoid the AD's. But the truth of the matter is the potential for negative mental side effects from Interferon are terribly high. Depression is one of the biggest reasons for stopping treatment. My first go with Interferon in the 90's brought on crushing and literally crippling depression. Had I not been started on an AD, I would've stopped Tx, without a doubt. Don't let that happen. There are ways to deal with Interferon induced depression, some have spiritual methods, some through therapy, some through medication and then there are those that either don't have a problem (few) and some who deal with it (even fewer). Remember this is likely a drug induced, not emotional depression. The corrective measures are entirely different IMO. When I started Tx this time, I explained to my doctor about my previous go with it and he started me on a low dose Wellbutrin medication before and through Tx. I had absolutely no problems this time and Wellbutrin is an easy AD to stop. I'm currently tapering the dose and will stop it soon.

Whatever you decide to do, I hope you find it soon. Living with deep depression has a number of negative effects on your life and those around you. It's simply unhealthy and not conducive to a positive Tx experience. When you can, turn all negatives into positives when a solution is easily obtainable. I wish you good luck in finding your own resolution. Mine was the decision to use a AD and it likely changed the course of Tx for me.

Best, Tig

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Tig

68yo 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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Scruffy


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Lots of times I feel like sh@t also. I force myself to go out for air, walk, etc. The meds will put you in there "bubble". Force your self to break out of it. The longer you stay there the thicker the "bubble" gets. FIGHT!!!!!

Bell rings (ding) round one.



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
newmex


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Sally, sorry you feel so bad. I know for me, some days are good, and some just aren't no matter what I do.  I do take a anti d and for me it helps a lot. I know last time I was on treatment, I wanted to tough it out and wouldn't take it and some days were just miserable. I take them this time and makes the bad days not quite so bad.  And try not to over do any thing, takes your body forever to recover. That medicine plays tricks on your mind, so hang in there. Every one on here understands how you feel so don't be afraid to just vent those feelings sometimes. So, rest,drink, scream, cry, in what ever order you want, and you will either feel better or be able to sleep longer. Have a good day  



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John
globetrotter


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Hi Aprileee

Thanks .....

Think thats my problem..to tired and weak..Netflix Im on and water...been trying to avoid AD's hoping its just a phase...will kick myself up the arse again !!



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
aprileee


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Light exercise, Water, Comfort food, Netflix, Xanax.

That helped me anyways :)

 



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33 years old Genotype 3a NO luck with Peg & Riba in 2013 but am undetected after 2 weeks of Sovaldi with Riba 2014 :)
globetrotter


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Took jab 14 last night but seemed to have lost my way over the last few days...feel quite low and tearful...sort of numb in my head.....Ive been out but still feel so c**p....any suggestions gratefully received



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51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
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