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Author Topic: More and More Fatigued! What's going on.....?  (Read 11503 times)

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Offline JackN

  • Member
  • Posts: 52
More and More Fatigued! What's going on.....?
« on: April 25, 2016, 06:22:49 pm »
Hello Fellow Warriors

Two months after treatment and more fatigued now than ever. I contacted the GI, and asked if I could have a repeat Fibroscan plus I know I have two spots on my liver (septated cyst and hemangioma per MRI) plus any bloodwork to see if I have acquired liver damage during or after treatment. (Really grasping for straws).  Doc says we will discuss but it can take one to two years to feel the effect of being cured after treatment. WTH?  I felt waaaaay better before.

Labs all over the place. High MCV, Low Absolute Lymphocytes. Seeing a hematologist who now doesn't think it's my blood causing fatigue although there was talk of lymphoma so now being referred to rhuematolgy (September is first available Appt.

Now I see have to hematology every three months.......

My sense of smell is out of this world.

I'm so tired of being tired. Spending a lot of time just lying around w NO STAMINA.

anyone else????
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: More and More Fatigued! What's going on.....?
« Reply #1 on: April 26, 2016, 12:47:20 am »
I was in that boat for many months post-treatment, I regret to say. And I am not out of the woods yet, but I am much better now that I am 9 months post-treatment., However, fatigue and low energy are still problems. For the first 2-3 months post-tx I was often bedridden with high fever, drenching night sweats and extreme fatigue. was checked for many things, but no indication of foreign infection. My iron has been extremely low all these months and will not rebound no matter how much iron I consume via supplements and food sources. So that is worrisome, and I believe is tied into this whole post-treatment syndrome. Have you had your serum ferritin level checked? Could be another piece of the puzzle.

Healing does take time. That's what I keep telling myself. But I also now think something else is going on in my body - something that may not be so good.

Do keep us posted.

best,
kim
« Last Edit: April 26, 2016, 02:45:04 am by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline JackN

  • Member
  • Posts: 52
Re: More and More Fatigued! What's going on.....?
« Reply #2 on: April 26, 2016, 08:30:24 am »
Thanks Kim

I will ask doc to check ferritin too.  If I knew I was going to feel this bad, I may not have taken the harvoni. At least I had quality of life before.  In 6-9 months it (fatigue) may magically disappear and all is well (at least I hope so), and then I will be happy I took the harvoni. Or like you, it may very well be something entirely different brewing in my body.   Will stay in touch.  Hope you regain energy too!!!!
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: More and More Fatigued! What's going on.....?
« Reply #3 on: April 26, 2016, 10:36:58 am »
Hey JackN,

  I seem to be in the same boat. Made to SVR24 , Labs seem to be O.K.. Get My copy tomorrow to look over. Mid afternoon gets really rough. Evenings suck big time. No energy to the point where I get bitched at for laying around all the time at home. Work is pretty tough but muddling through. The smallest task seems to sap all of My energy. Saturday mornings been sleeping in until 9:00-10:00AM. Highly unusual for Me. Usually up before 7:00AM. Sundays not so bad. Lots of joint pain and My headaches have come back also.  Low grade fever , discomfort in the liver area , and lower G.I. issues every 10-14 days to boot. Moods and aggression have been off the chart as well.
 Oh well, at least the Dragon has not been resurrected and is still in his crypt. Here is hoping we get to feeling better soon.

  TO YOUNG TO RETIRE , AND TO OLD TO GIVE A CRAP. THAT IS LIFE ON THE CRAZY TRAIN WE CALL LIFE. WHAT'S NEXT ? ??? :-\ BRING IT ON!!! ;) ;) ;)
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline JackN

  • Member
  • Posts: 52
Re: More and More Fatigued! What's going on.....?
« Reply #4 on: April 26, 2016, 11:26:06 am »
Hi Slats

Called for my recent CT (seeing hematology also now) for M spike and benign lung nodules. Hematology said stable ct BUT I read I now have a NEW thickening of the anterior pericardium.  Whaaaat?  That's a stable CT. I think not. Now I guess I need to call a cardiologist. Might be a very good explanation for the extreme fatigue, who knows. And did harvoni cause it?  Didn't have it before I started per a cat scan in October.  I don't know how to feel now. Losing faith in doctors as I type.
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: More and More Fatigued! What's going on.....?
« Reply #5 on: April 26, 2016, 11:48:05 am »
  If the Drs.' can't find anything , they want to do an MRI next. YIPPEE. That should cost a bundle. Sure wish they could have done it last year. Looks like my HSA account is gonna get wiped out again and then some. Another round of labs next month comes first. I told them that I needed a shunt installed since they take so much blood so often. Well at least You have been getting some feedback from Your team. I think the world of mine , but lately all I have been getting is shrugs and do some more tests.
 Here We go spin the wheel and try Your luck!
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline JackN

  • Member
  • Posts: 52
Re: More and More Fatigued! What's going on.....?
« Reply #6 on: April 26, 2016, 12:34:12 pm »
Yep, but I don't give up easy. Lol (well not really laughing). I can be aggressive. Already faxed report to PCP and called a cardiologist I saw a couple years ago for fatigue and had a stress test I passed.

I have to admit, this is getting to me though. I honestly thought I was going to feel like a new person after eradication of HCV.

3 lung nodules, 2 liver spots (benign so they say), kidney cyst, now this thickening of (can't even recall medical terminology - in previous post above), m spike, mild cryogloblinS, few more small issues.  Just disheartening :( to feel like I have to be Sooo proactive and move the medical system along rather than curl up and.....
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: More and More Fatigued! What's going on.....?
« Reply #7 on: April 26, 2016, 01:00:57 pm »
Jack, keep up the fight, our healthcare system here in the US leaves an awful lot to be desired.  FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline JackN

  • Member
  • Posts: 52
Re: More and More Fatigued! What's going on.....?
« Reply #8 on: April 26, 2016, 01:41:03 pm »
Thanks FT

liver doc has arranged for me to come in sooner now (too). Maybe a repeat MRI for liver spots and another fibroscan, of course bloodwork. Seeing doctor and PA this time. Thought, definitely, cardio should be next too. Thank goodness I still have my wits to arrange all these appts expeditiously.

PCP Thursday.  All outings seem to head to doctors so far this year but I'm still grateful and thankful. Trying to stay positive.

Process of elimination for debilitating fatigue in my mind - hematology/oncology, autoimmune, liver or heart. Have all four doctors plus pcp lined up.

Thanks for allowing me to vent. Only we warriors can truly understand our magnitude of issues.
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: More and More Fatigued! What's going on.....?
« Reply #9 on: April 26, 2016, 01:47:16 pm »
Jack, thoughts and prayers are with you to get this figured out very soon.  And vent away -- we fellow warriors are uniquely qualified to understand what you're going thru! Keep your positive attitude, it usually helps -- FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: More and More Fatigued! What's going on.....?
« Reply #10 on: April 26, 2016, 01:57:21 pm »
There is also the possibility that Epstein-Barr virus became activated. Did you ever have mono in your life? That is being discussed on this thread: http://forums.hepmag.com/index.php?topic=4115

There are blood tests that can be done to see if EB virus is active in your body.

good luck!

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline kimharvest

  • Member
  • Posts: 35
  • Fighting to Get Back my Life - GT 3a
    • Vital Wonders
Re: More and More Fatigued! What's going on.....?
« Reply #11 on: April 26, 2016, 02:25:56 pm »
Definitely have the four Epstein Barr Virus tests done. I was feeling so fatigued after my hepc cure and saw an article from the Medical Medium about the EBV I asked to be tested for that. My viral loads were high! They say EBV starts Hepc and a lot more. How it survived after 4 months of the hepc cure I don't know but it broke out unbeknown to me, with a vengeance. it is mono but can become chronic too. Good luck!
kimharvest
"Eat healthy food and drink pure water for a healthy life."
GT 3a  15,000,000 VL.
Started Sovaldi/Ribavirin 1/26/15 for 24 weeks.
Doctor Office Dropped me on 5/8/15 at 14 weeks;
Finished 4 months total, two months short.
I do not recommend Grand Junction Gastro!
Not Detected at 3, 6 & 12 months.

Offline JackN

  • Member
  • Posts: 52
Re: More and More Fatigued! What's going on.....?
« Reply #12 on: April 26, 2016, 02:57:17 pm »
Thanks Kim.
I don't remember having mono but will certainly ask pcp Thursday for testing. Tks :)
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline JackN

  • Member
  • Posts: 52
Re: More and More Fatigued! What's going on.....?
« Reply #13 on: April 26, 2016, 04:38:37 pm »
Well, I have cardiology appt tomorrow (different doc but same practice as cardiologist before).  Called nurse line and they were able to see ct report from hematology.  No referral needed praise the Lord.

Also found an error on ct report. One nodule did grow 1mm.

People please get reports and review, and then re review.  This has been a full medical fight the system day!  But I'm still here and thankful.
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline kimharvest

  • Member
  • Posts: 35
  • Fighting to Get Back my Life - GT 3a
    • Vital Wonders
Re: More and More Fatigued! What's going on.....?
« Reply #14 on: April 26, 2016, 05:10:33 pm »
I never had it either that I knew of! Just chicken pox. But my fatigue was so great after going thru 4 months of sov/riba, something had to be behind it. The mono test isn't good enough either. Must be the EBV tests. Just a heads up, may have nothing to do with you, but EBV seems to be behind hepc, they seem to go hand in hand. Best of luck!
kimharvest
"Eat healthy food and drink pure water for a healthy life."
GT 3a  15,000,000 VL.
Started Sovaldi/Ribavirin 1/26/15 for 24 weeks.
Doctor Office Dropped me on 5/8/15 at 14 weeks;
Finished 4 months total, two months short.
I do not recommend Grand Junction Gastro!
Not Detected at 3, 6 & 12 months.

Offline JackN

  • Member
  • Posts: 52
Re: More and More Fatigued! What's going on.....?
« Reply #15 on: April 26, 2016, 05:18:13 pm »
Yes I had chicken pox. For sure I will request that that. Thank you :)
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline Forest dweller

  • Member
  • Posts: 27
Re: More and More Fatigued! What's going on.....?
« Reply #16 on: April 28, 2016, 02:12:41 pm »
Hello Jackn and everyone,
I haven't been on forum for awhile..was feeling great, getting a lot of work done, but am sagging now.  It's week 10 Harvoni of 12 week regime.  Is this normal?? Tired again.  Haven't got my results from 8 week RNA TEST yet,  I'm very stressed.  I keep reading the relapse posts and worry I will relapse too! Such a depressing event for those people.  Bree's positivity was great to read I must admit.
Also, I was wondering if there were any 1b geno's out ther that did Harvoni and did t relapse???
Again, I am 1b, had over 6 million virus's
F2-3
Down to 1 million at 4 week
Now feeling yucky again.

Offline JackN

  • Member
  • Posts: 52
Re: More and More Fatigued! What's going on.....?
« Reply #17 on: April 29, 2016, 01:12:54 pm »
Forest Dweller

I was slow to clear the virus, and fatigued throughout treatment.

Post treatment 4 week check still showed virus was NONDETECTED. I go in two weeks for my 8 week testing.  I was 1a.  I literally rested for three months during treatment, ate well, and stayed at home away from the winter viruses and flu, and read a lot.

Again, hang in there. This group is wonderful support system!

1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline Bestmomy

  • Member
  • Posts: 8
Re: More and More Fatigued! What's going on.....?
« Reply #18 on: June 11, 2016, 10:24:49 pm »
Forest Dweller,
How are you doing??
As a 1b myself. I didn't bounce back quickly after treatment ended.   32 weeks post treatment of 12 weeks treatment  as you,  still undetected and was told I was cured.
But I am struggling.  Starting out with no liver damage ,  but fatigue and out of range liver tests.  I logged in to research others that may be suffering with depression post treatment. I hate to claim this and feel guilty. My immune system seems stressed from treatment also, skin hive flares never experienced.  Now I'm reading people are showing relapse after a year clear,  and I'm wondering if the depression is really fear of relapse.
The folks on this forum are so nice and helpful and positive.  I need all the support I can get right now and hope to give back more soon.  I am so sorry to hear of anyone who relapses at any time and hope you cure soon.








Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: More and More Fatigued! What's going on.....?
« Reply #19 on: June 12, 2016, 11:42:30 am »
Yes Kim

A toxic situation you are in.  Those things have great influence on our physical and spiritual well being and go deep.  Maybe we can all get cabins on wheels and meet in the woods.  This family will treat you right  ;)
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline brie41

  • Member
  • Posts: 191
Re: More and More Fatigued! What's going on.....?
« Reply #20 on: June 12, 2016, 02:42:38 pm »
I can really relate with so many of you and the funky symptoms we are having post treatment.  I certainly felt better before, but hopefully it will be worth it in the end.  I only read one post from Audrey who relapsed after her 6 month svr.  It is only 1%, but a big deal if you are that 1%!  I am ready to call my Doctor and having some tests run very soon.  Good luck everyone!!  Brie
Diagnosed  HCV, 1A 2006
Viral load 6 million
Ast/Alt always in the 20's
F0-F1, never changed
Treatment naive, started 8 week Harvoni 3/15/16
4 and 8 week labs undetected
6 week eot labs undetected
13 week eot UNDETECTED!

 


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