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Post Info TOPIC: How do you feel post treatment?


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Well I hit my 12 wks ptx S/O and get labs done next Tues. I also feel pretty depressed at times, mostly around the stresses at work really loop me.

But the insomnia thing..... I have been fighting that for a very long time, and I just finally said OK I'm going to be tired there is nothing I can do about it so I may as well not get angry about it too. I quit fighting it.

The best feeling is just being outside, I have some space so it's relatively quiet and birds, and frogs and nature noises are the most relaxing.

 

I cannot tell you how much I just want to retire, even though I have a great job and Company to work for, I just want to do what I want, when I want, without work pressures, it just feels to overwhelming when in reality it's not...I think the ESLD is screwing up my brain or it was the damage from the anti depressant I took for a month and quit the wrong way a couple yrs ago ???

 

I think we just need to really double our efforts in positive thinking, and exercise is huge! even just a small walk makes a big difference.

If we accomplish something we feel good, if we do nothing but complain about how we feel we tend to feel worse...I think we all hold the key, we just have to unblock the door.

 

Duane



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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yes Caryn. I am going thru the same exact thing. word for word. went to general doc yesterday. I had a egd done on Friday but heartburn is still bad. he said to take my dexilant in the morn & the generic zantac in the evening for a while. they did an ekg to be sure, it was fine. headaches are horrendous at times. I got to make myself drink the 64 oz of water a day. I have not been doing that. so hopefully u & I can get to that  good place..smile

 

Taz



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 



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Thank you Isiscat2011 &  Tig56 for your responses. I am going to take both of your advice. I will call my doctor and let him know and I will also start doing more for others.. that is such great advise. It will make me feel better about myself and also make others happy. I have been more of a loaner lately thinking I aint happy with myself how could anyone want to be around me. I am going to try to be a little more social. I truly appreciate your responses and the feedback from the people in this forum. I will be in touch regarding my tests as well. Thanks again guys... xoxoxo



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G1a prior tx 2005 with peg & RIBA -quit due to bad side effects. Follow up visit showed it was back. Current tx Olysio/sovaldi 673,000 vl on 3/21/14. May 1st undetected vl. EOT 12 weeks undetected!
Tig


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Hi Dee Dee,

Sorry you're feeling so down. It's not uncommon at all to feel that way, so you're not experiencing it alone. I was on an Interferon based protocol and it's well known for causing depression. Fortunately I was prescribed an anti depressant beforehand, so I didn't have any issues (this time). The first time was a different story altogether. The emotional roller coaster of treatment itself can be responsible for many of the ups and downs you're experiencing. Understanding that this happens to a lot of people may not help you feel better, but it may help you understand why. I think you've done an admirable job of looking for your own resolution, but it looks like you need to talk to your doctor about it. They can make some recommendations that will hopefully address the problem quickly. This isn't your fault, but most likely a combination of things. Things like the drugs, the time you spent on treatment, hoping for success and not knowing how it will go. There are so many highs and lows, constant exposure to information that some days is upbeat and days that break your heart. You deal with people at work that probably don't understand and some that think they do and treat you inappropriately. All of this daily action can confuse and upset you. The good days just don't happen often enough to keep your mood where you'd like it to be all the time. I know how it feels and I hope you take my advice and seek the advice of someone that is able to sit down with you and help you get things back on track. If you want to talk about anything, just let me know. We're here to help. So hang in there and be sure to let us know about those upcoming tests. I'm anxious to hear the good news!!

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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Hi Dee Dee:

You can deal with this.  We sometimes get our hopes up so high for that great tomorrow--whether it be EOT or SVR or whatever-- that the reality can rarely measure up.  I don't really know you but I do know that quick fixes like shopping and taking something to lift my mood are not helpful for me.  If you are clinically depressed, however, you should probably seek some professional help.  A few upbeat words from someone else won't do it because that is just another quick fix.

It may just be that the roller coaster of the whole tx experience has been overwhelming which is perfectly natural.  These tx can actually alter our brain chemistry and the effects can be significant for some time.  

I would try to immerse myself in something other than HCV in this situation.  Not something like shopping but something substantive that holds deeper meaning for you.  If you can't think of anything that holds your interest then take long nature walks and also try to get outside of your own head by focusing on others.  Not in a meddlesome way, mind you, but in a being of service way.  lol

I don't know if anything I said helps but I wish you the best and I believe you can deal with this.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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Hello all, I've been off treatment for a little over 2 months and I have been depressed. I am just sad all the time. I have really bad insomnia which is bad for me cuz I can't function on no sleep. I've had to call in sick twice already due to lack of sleep. Then I get even more depressed cuz I hate to call in sick. I go shopping and buy nothing (which some would say is a good thing) but for me it cheers me up when I find something I like but I can't even get that little boost. Oh well. I have another 3 weeks to go to get my VL test done to see if the S/O combo worked on me. I also have that Q80K thing so my chances so ridding this virus is lower than someone without it. SOOOOO.. does anyone now of something that I can take to lift my mood ? I can't deal with this ...  no



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G1a prior tx 2005 with peg & RIBA -quit due to bad side effects. Follow up visit showed it was back. Current tx Olysio/sovaldi 673,000 vl on 3/21/14. May 1st undetected vl. EOT 12 weeks undetected!


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I'm off the S/O for about a week.  I get tired it not as much as I did the last few weeks of treatment,,...feeling better everyday with really no side effects,,,,

wishing everyone the best!



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well My side effects are starting to wind down, I have brain numb instead of brain fog, witch is probably normal for me. 3 days off the stuff.



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 



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I am about 8 months post.  It took about six months for me to start feeling "normal".  I had lingering rashes, headaches, nausea, and fatigue.  I took antidepressants during treatment and plan to stay on them at a reduced dose. I think this has help my emotional recovery.  Fortunately, I was able to reduce my work load and stress level before finishing treatment.   I hope all of you who continue experiencing side effects will get some relief in the near future.  You will be in my prayers.

 



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Hep C 1a since probably 1981.  Incivek, riba and interferon-48 weeks.  UND at weeks 2-4-6-8-10-12-16-20-24.  Previously Interferon alone for 6 months non-responder.  SVR 48 weeks 12/11/14



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Hey strangers...

Well I am 12 weeks and 3 days post treatment. I closed on my new construction home 5/8/14 which was only 3 days after taking my last pills. We didn't move in until the end of May as there was no way I would have been able to do it. The last month of treatment really took a toll on me. I was able to do the move though, even carried furniture and stuff - just took lots a breaks. I think I was so preoccupied and tired with all the things that a new homeowner needs to do that I didn't really notice any changes at first. It definitely took almost 8 weeks for my skin and hands to clear up. Thankfully it only took about 6 weeks until I felt like myself again, like I had control over my own mind. Today, 12+ weeks after taking my last pills, I definitely feel like myself again. Which is in a way a disappointment I guess as having this beast my entire life, I thought maybe I'd feel different "without it" ... but then again I don't know if I'm still "without it" yet.  Unfortunately the way my job is, all the work I was doing during my treatment is starting to come up for "reviews" and I'm seeing with clarity how foggy my mind actually was then. Mistakes I would never normally make. I'm so thankful that I had told my manager I was going through treatment as he's been very understanding about the mistakes and such.

I went to the lab today for my EOT+12 viral load and LFT's.  I had to beg my liver doctor for a CBC too due to that pesky white blood cell count thing that plagued me. He wanted me to follow up with my PCP or the Oncologist again for that but I would have had to make an appointment and go in to see either of them just to write the lab order.  So I had to promise him that if my WBC is still elevated I will go back to the PCP to see what's up. I'm hoping that my position on it being related to treatment will be proven and it will be back to normal!

Hope all is well.



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 



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yeppers,  I feel overwhelmed too. I know I've got major life changes going on, but this is different. I'm more sullen. Lately I've been waking up very depressed and grumpy.

Even with the great nutrition and consistent exercise, I can be quite morose now. I don't remember being this dark before tx....The trade off was worth it but gee, will the happy kellie return?? All I can say is hang in there, what else is there to do?



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HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!



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suziq, I am almost 5 month post tx and I am feeling so much better, but I understand about being different post tx.  I agree, I also thing the Riba changed my personally.  I have my energy back, but I don't have the zest for life that I did before tx and I don't want to deal with life drama.

You sound as though you have your share of life's drama.  I always thought life got easier the older you got...less stress...not so.  I feel overwhelmed.

I also will include you in my prayers.  Good luck with everything.



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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!



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Suziq,

You have such a "full plate" of life's problems, I shall include you in my prayers.

I look at my own plate and it's so empty in comparison, I shall count my blessings a little more carefully.

 

-Tim



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 



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yes caryn. I feel really like crap too.. 7/17 was last of the pills..  tummy upset. headaches.. oh well.. hopefully will go away soon.

 

suziQ, prayers for you. Hang tough.. God loves us all.. I will be thinking bout u!!!



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 



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Tig56 wrote:
 I'm hoping that this will be a recovery that improves with age.

Tig


 I'm convinced the only thing that improves with age is wine....and I can't even have that anymore!

no

 



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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suziq wrote:

I felt pretty good just after treatment except for stomach pain.  Although it is more intermittent, it has not gone away.  I sleep less during the day.  I have had so much personal stress since the end of treatment--daughter lost her partner to COPD and she had no income--my house burned down without insurance--two rental properties stopped paying and I am process of eviction (one of tenants has had 2 drug arrests recently--I did not know he is a drug dealer)--the house I foreclosed on and am living in has no interior walls and little plumbing--$4000 back RE taxes on foreclosed house--just a lot in a very short period of time.

Just as soon as I was finally rid of Hep C, life came out and hit me in the face. 

I do have less fatigue, but I am truly annoyed with the stomach pain.  I had two scans during treatment to see why.  Nothing found except that my spleen has gone back down to normal.  I really think the oral meds can be hard on the stomach for some people.  Didn't have stomach pain before treatment. 

I am grateful that I no longer have Hep C, but it really didn't affect me much except for fatigue and occasional side discomfort.  I had no clue that I had cirrhosis.  I am sure that in time there would have been complications from cirrhosis.

I do think the ribavirin changed me some.  I get angry much more quickly than before.  That started about 4 weeks into treatment and has not really subsided.  But who knows--maybe brain fog just got in the way of my noticing things.

Just very glad that Hep C is no longer something I need to deal with.  I scratched it off my "to do" list 

SuziQ    


 That is a lot of stress Suzi!  Hang in there!  I guess I need to just do the wait and see for a little while, it sounds like there are a lot of people that are experiencing after effects.  I will see my doctor in 3 weeks and if this has not subsided then I guess I can go from there. Thanks!



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!



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I felt pretty good just after treatment except for stomach pain.  Although it is more intermittent, it has not gone away.  I sleep less during the day.  I have had so much personal stress since the end of treatment--daughter lost her partner to COPD and she had no income--my house burned down without insurance--two rental properties stopped paying and I am process of eviction (one of tenants has had 2 drug arrests recently--I did not know he is a drug dealer)--the house I foreclosed on and am living in has no interior walls and little plumbing--$4000 back RE taxes on foreclosed house--just a lot in a very short period of time.

Just as soon as I was finally rid of Hep C, life came out and hit me in the face. 

I do have less fatigue, but I am truly annoyed with the stomach pain.  I had two scans during treatment to see why.  Nothing found except that my spleen has gone back down to normal.  I really think the oral meds can be hard on the stomach for some people.  Didn't have stomach pain before treatment. 

I am grateful that I no longer have Hep C, but it really didn't affect me much except for fatigue and occasional side discomfort.  I had no clue that I had cirrhosis.  I am sure that in time there would have been complications from cirrhosis.

I do think the ribavirin changed me some.  I get angry much more quickly than before.  That started about 4 weeks into treatment and has not really subsided.  But who knows--maybe brain fog just got in the way of my noticing things.

Just very glad that Hep C is no longer something I need to deal with.  I scratched it off my "to do" list 

SuziQ    



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Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR



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Thank you all for the replies! I have an appt. with a family doctor tomorrow because I have tennis elbow. I have had to take so much aleve for the pain (I kept it to only two a day, and skipped some days and used tylenol) so between that and the heartburn that is why I suspect maybe an ulcer. Who knows, maybe I just caught a bug or something. I'm just ready to feel better!!!! 

I hope everyone continues to improve!!! 

Tig, is your positive attitude for sale??? I need some of that!



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!



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I still feel fatigued many days and still have some depression. Other than those, I'm not having any residual side effects. I read that RIBA can take up to 6 months to completely leave the body, depending on how long one takes it. I never really felt I'll from the hep c but sure did from tx. But I've been lucky, though I have had the disease at least 30 years, I have no damage to the liver except some enlargement. I go for an ultrasound this month and will see if that's improved. Glad tx is over and hope to feel 100% me again soon. 



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genotype 2 completed sovaldi and ribavirin on 6/4/14. SVR on 12/3/14



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Caryn wrote:

I'm just wondering how everyone is feeling post treatment. I have not been feeling so well. I had horrible heartburn during treatment and was tested for an ulcer at my 10 week labs, but everything was fine. I still have horrible heartburn, upset stomach, fatigue and just a general unwell feeling. Anyone else that has completed treatment still feeling blah? 


 I guess you could expect after years of infection for the body to go in shock when there is nothing there anymore. I'm not suprised that some bodies go into overdrive for a while, its used to over-working with the viruses. Give it time to recover and try not to think about it. Sometimes symptoms are stress related and nothing to do with treatment but are actually real symptoms I guess also time will tell.

I was not on treatment long enough to have any long term affects so I felt mostly relief and back to normal the next day.  Hoping you feel better soon.



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Genotype: 3b

VL.ïż½over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 



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Hi Caryn.

If your EOT is 6/29/14 its probably a little to early to feel a major difference. I know Roxie and I both had terrible heartburn with our txs and I still get it even 6 weeks EOT. The riba will takes a while to leave your system. I'm just now able to expose myself to sun for extended periods. Even tho I'm starting to gain strength and some endurance, I still have periods of fatigue.

Good luck with recovery.

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jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.

Tig


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Hi Caryn,

I'm working on my 8th month EOT and understand how you're feeling, I think. I had a real surge of motivation and activity at the end of tx and have seen a real improvement in my blood work as well. But I'm noticing a real problem with the blahs, have lost the motivation and am suffering from joint and spine pain. Not having the gastric symptoms you're describing though. I'm hoping that this will be a recovery that improves with age. I know that many of the complications some have discussed during treatment seem to improve over time. I know that it takes some several months to "shed the meds" and return to the condition we hope for. I'm hoping I'm just being overly anxious for everything to get back to what I want life to be. I'm going to try and give myself a bit of a break and not expect it to happen overnight! We've got a lot to be thankful for and I haven't lost sight of that. A positive attitude does help and I've got to remind myself that a little patience does too. We'll get there.... Have faith!

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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I'm just wondering how everyone is feeling post treatment. I have not been feeling so well. I had horrible heartburn during treatment and was tested for an ulcer at my 10 week labs, but everything was fine. I still have horrible heartburn, upset stomach, fatigue and just a general unwell feeling. Anyone else that has completed treatment still feeling blah? 



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!

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