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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13307

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Hi friends!

Thought I could post a bit about my progress.

I'm ending my week 4 and have done my basic blood tests. My liver enzymes are normal - first time in 20 years. Not so happy about some other stuff, a bit too much iron (?), K-Sedimetation high (?), blood in urin (?), S-CK high (??), S-CEA high (??)... getting viral load next week.

Observations:
Sleeping is disturbed (I rarely sleep through night in one piece) but that don't bother me that much, I'm used to it.
This week my heart beat is irregular, I feel a lot of palpitations and VES - not a good feeling at all. It happened also before tx.
No headaches (only once in the 1st week)
My anxiety has not really gone away as I hoped for.
I have hot flashes every day :/
Worst hours for me were some 3-4 hours after taking the pills. Lightheadness or some strange feeling. But last days I didn't feel it that much (anymore?)
Can't really work a lot behind the computer, I start to be more anxious - no worries there because I'm a freelancer and I can adapt.

So all in all, not that good but not that bad either.

Will keep you posted :)
GEN3 for 20+ years
November 2015: Bilirubin 6, AST 0,88, ALT 1,74, gamaGT 0,17, HCV RNA 43800 (previous 478000)
Fibroscan form 4,3 do 6,9 (measuring twice a year)
Started Sof/Dac on 23.2.2016
Week 4: S-Bilirubin: 12, S-Bilirubin dir: 4, AST: 0,30, ALT: 0,36, Gama GT: 0,17, Fibroscan: 4,4, still HCV RNA positive (no VL measured)
Week 8: S-Bilirubin: 8, S-Bilirubin dir: 3, AST: 0,39, ALT: 0,39, GamaGT: 0,14, UND :)
16.5. EOT, everything like it's supposed to be :)
6 month after EOT still UND :)
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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13309

What is your weight?
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Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James

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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13312

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Hi Hope,

Great to hear that your liver functions are back to normal, that's a good sign that the meds are doing their job. Look forward to hearing of your VL results when you get them, I'm sure they will also be good news. :cheer: The other results don't sound directly related to the treatment and you should discuss with a doctor whether they need further investigation so you aren't worrying about them.

It sounds like you are handling any side effects without too many concerns which is good news. :+1: I wouldn't be too worried about any issues not clearing up yet, you have had hep for a long time so it is unlikely that all the symptoms will just disappear immediately. And some may not be totally related but once you get rid of the virus you will be a lot healthier and can then focus on anything that is left.

Wishing you a great VL result. :)
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13317

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Great that you are doing better Hope :)

(and my apologies for not tracking down your thread sooner, I've been trying to catch up here and evidently missed you)


I can vouch for the fact that my lifelong anxiety/depression issues (which Hep can only have exacerbated!) have been lessened noticeably since I've been on tx...and I'm sure you will feel it lift in time too. For your worrying thoughts, I can relate its easy to get into ruminating about all the worst possible outcomes - been there and done that! I can really recommend looking into CBT and mindfulness; it will help to separate yourself from your thoughts and see that that is all they are - and more importantly you don't have to believe every one/take them onboard if they aren't helping you. Just a suggestion anyway :)
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
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Last edit: by zhuk.

Afraid to take the meds due to severe anxiety 6 years 6 months ago #13329

Hello Hope,

The normal LFTs are good. The other things need to be looked at by a doctor - first totally ignoring the fact you have/had Hep C and then considering what if any role the medication might be playing.

Haemochromatosis is an iron overload disease that can hide behind other liver diseases. It usually turns up in women after menopause because the blood loss each month keeps it under control.

Nobody should have blood in their urine so this should be investigated.

The ESR, CK and CEA are all somewhat non specific, but at the end of the day most people sit in the normal range for most tests and if you're tests are outside those ranges it may just be you, but it may also be significant.

Get a good doctor to look at it for you.
YMMV
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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13332

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Thanks everybody, thanks Dr.Freeman!

I have already given this tests to 2 doctors, both assuring me that "it's all not so much outside the range"
I'm sure you have different measures in Australia but here you go:

K-Sedimentation: 18 (less than 15) - probably because some uroinfect (blood in the urine)?
S-CK: 3,20 (less than 2,41)
S- Holesterol: 6,20 (4,0-5,2)
S-LDL Holesterol: 4,1 (2.0 - 3,5)
Iron: 27 (6,6-26)
S-CEA: 5,7 (less than 5)

If you have time to comment on that I would appreciate.
And it's damn hard to get a good GP over here... :/

thanks
Hope
GEN3 for 20+ years
November 2015: Bilirubin 6, AST 0,88, ALT 1,74, gamaGT 0,17, HCV RNA 43800 (previous 478000)
Fibroscan form 4,3 do 6,9 (measuring twice a year)
Started Sof/Dac on 23.2.2016
Week 4: S-Bilirubin: 12, S-Bilirubin dir: 4, AST: 0,30, ALT: 0,36, Gama GT: 0,17, Fibroscan: 4,4, still HCV RNA positive (no VL measured)
Week 8: S-Bilirubin: 8, S-Bilirubin dir: 3, AST: 0,39, ALT: 0,39, GamaGT: 0,14, UND :)
16.5. EOT, everything like it's supposed to be :)
6 month after EOT still UND :)
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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13334

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@Splitdog: 78 kg :) trying to loose some weight :)
GEN3 for 20+ years
November 2015: Bilirubin 6, AST 0,88, ALT 1,74, gamaGT 0,17, HCV RNA 43800 (previous 478000)
Fibroscan form 4,3 do 6,9 (measuring twice a year)
Started Sof/Dac on 23.2.2016
Week 4: S-Bilirubin: 12, S-Bilirubin dir: 4, AST: 0,30, ALT: 0,36, Gama GT: 0,17, Fibroscan: 4,4, still HCV RNA positive (no VL measured)
Week 8: S-Bilirubin: 8, S-Bilirubin dir: 3, AST: 0,39, ALT: 0,39, GamaGT: 0,14, UND :)
16.5. EOT, everything like it's supposed to be :)
6 month after EOT still UND :)

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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13338

A simple explanation for blood in urine in a woman is around period time or urine infection. You want this to go away because if it does not it could be serious.

I would take a watching brief on the others and see where they are at in a month or two or after treatment.

Your cholesterol is a bit high. I would try a ketogenic diet (meats, fats and vegetables with low carbs and see what happens to it)

CEA can be elevated in Ovarian and other cancers but if you read this:

www.ncbi.nlm.nih.gov/pubmed/3148466

You will note that it is a very poor screening test.
YMMV
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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13369

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Today I had an appointment with my hepC doc and I told her I was on generic Sof/Dac. Her first reaction was...well....she was angry and suprised. Her question was how a smart, intelligent woman like me (I'm accepting marriage proposals in my inbox :lol: ) with such a fear of pills could go and purchase pills from India and started taking them.

She said that she's worried about the additives in this pills and long term effects of this additives and this combo. Well couldn't say much about that, but I told her that it was THE TIME for me to do something regarding my hepC and that's it. At the end of conversation she was already a bit calmer . She was like "I don't know what to do with you". And than she said something that suprised ME. "Come in a month, I'll monitor you like you're on regular treatment with us".

I thought it's a nice story so I'm sharing :)

So in a month I'll know my viral load, they took a bunch of blood out of me. Will keep you posted.
GEN3 for 20+ years
November 2015: Bilirubin 6, AST 0,88, ALT 1,74, gamaGT 0,17, HCV RNA 43800 (previous 478000)
Fibroscan form 4,3 do 6,9 (measuring twice a year)
Started Sof/Dac on 23.2.2016
Week 4: S-Bilirubin: 12, S-Bilirubin dir: 4, AST: 0,30, ALT: 0,36, Gama GT: 0,17, Fibroscan: 4,4, still HCV RNA positive (no VL measured)
Week 8: S-Bilirubin: 8, S-Bilirubin dir: 3, AST: 0,39, ALT: 0,39, GamaGT: 0,14, UND :)
16.5. EOT, everything like it's supposed to be :)
6 month after EOT still UND :)
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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13372

I asked your weight because if you were really small, the standard dose will actually be larger for you. But no. Good luck on the VL test. I would like to be there when the Dr sees your results with you. Don't be too smug!! ;)
This email address is being protected from spambots. You need JavaScript enabled to view it.

Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13374

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I love the anecdote about your GP Hope. It reminds me of the receptionist yelling "no no no" into the phone when I rang my liver clinic after doing exactly the same as you to ask if they would still monitor me.
I'm seeing you wafting in wearing a full Indian inspo outfit next appointment and perhaps a little bow on greeting you could even make sure you have a faint smell of curry. I do have a crazy humour when it comes to these shock reactions we deal with then have to water down the "horrified" person, funny how they always come around like Split said haha when you're UND :)
After all these meds are from India shock horror!! I'm UND both bloods and near EOT now so feeling awesome
Wishing you well and getting those other niggles sorted too that it's nothing serious
My bicarb is slightly over on each bloods but I am not thinking about it until EOT see what happens then once the meds have left my body
Blood in urine is so annoying huh I had that heaps in 2014 it was kidney stones and I had a lithotripsy which sorted it.
Good luck for your VL Hope again I love the anecdote about the shocked doc. Gave me a giggle xx
Ariel
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Afraid to take the meds due to severe anxiety 6 years 6 months ago #13380

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Hi Hope,

Not only were you able to organise the medication you need when your doctor couldn't but now you've got her monitoring your treatment......you definitely sound like a very smart, intelligent woman to me. ;) :+1: :lol:
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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Afraid to take the meds due to severe anxiety 6 years 5 months ago #13793

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Hi everybody, approaching half of the treatment, end of week 6.

Don't really have good news:
- my blood in urine resulted in a huge bladder infection (or something like that - the doc isn't sure). At one point I head really terrible aches in the end of stomach, peeing was painfull as hell. I also peed a bunch of bloody filth at the lab - like some kind of trash :/
Since I don't have problems with UTI's otherwise, I kinda think it's the meds. I got antibiotics wich actually don't do me any good, after 3 days of taking them it should be better but it isn't.. My kidney area started to hurt, also my liver area. Don't really know what to think about all this... It also frustrates me that instead of 2 pills a day of Sof/Dac, I have to eat additional 4 of antibiotics...
- my period stopped, I'm having hot flashes, my gynecologist says that I as well might enter a menopause. I'm only 41!!!
-sleeping got a bit better
- heartbeat/palpitation and other stuff is ok for now

Have no idea really how to handle this...anybody here with similar problems???
GEN3 for 20+ years
November 2015: Bilirubin 6, AST 0,88, ALT 1,74, gamaGT 0,17, HCV RNA 43800 (previous 478000)
Fibroscan form 4,3 do 6,9 (measuring twice a year)
Started Sof/Dac on 23.2.2016
Week 4: S-Bilirubin: 12, S-Bilirubin dir: 4, AST: 0,30, ALT: 0,36, Gama GT: 0,17, Fibroscan: 4,4, still HCV RNA positive (no VL measured)
Week 8: S-Bilirubin: 8, S-Bilirubin dir: 3, AST: 0,39, ALT: 0,39, GamaGT: 0,14, UND :)
16.5. EOT, everything like it's supposed to be :)
6 month after EOT still UND :)
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Last edit: by Hope.

Afraid to take the meds due to severe anxiety 6 years 5 months ago #13794

Hi there Hope, I am so sorry to read you are having these troubles. I would see your nearest Dr, GP? and have some more tests? Who treated the bladder infection, can you contact them?

In the 2nd month of treatment, I got a chest infection, it was no fun at all! It took until the 7th (last) day for the antibiotics to do something - My GP warned me of this, don't know if it was because I was on the HepC meds or if it was the antibiotic type/strength. (Amoxicillin) Also, which antibiotics did they prescribe? .Did your Dr say anything about how long they thought it would take to work and / or when to contact them again?

I do think you need professional advise re this, hopefully someone will be along soon., but in the meantime, I suggest you try to get to see someone and just check the urine again etc at least.

Hoping you improve soon, I feel for you #love

lg
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Afraid to take the meds due to severe anxiety 6 years 5 months ago #13800

If you urinary infection is not getting better you are taking the wrong antibiotic.

With an acute UTI - when I do not have culture and sensitivity results - I randomly pick from Amoxil, Keflex and Trimethoprim knowing there is about a 30% resistance rate to each. If it does not work I change, and that is usually before the sensitivity results are back.
YMMV

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