Home › Forums › Main Forum › Patient Stories › Hep C and Me
- This topic has 54 replies, 25 voices, and was last updated 8 years, 5 months ago by Sven.
-
AuthorPosts
-
11 January 2016 at 9:20 am #8637
Hi .
I live in Sydney and contracted Hep C – your guess as good as mine.
I had bad heart burn back in mid 2013 and to cut a short story shorter I ended up having my gallbladder removed. A month after the operation I was still experiencing discomfort so my GP put me down for a full blood test which showed I not only had Celiac disease but Hep C. Further blood work showed I had Geno Type 1a. I registered at the Liver Clinic at Nepean Hospital Kingswood who wanted to start me on triple phase: Peg-interferon, Ribavirin and Boceprvir which I refused after a favourable Fibroscan, hoping for something less harsh and with a better chance of success in the form of all orals. So for the next two years I ventured back and forth to the liver clinic waiting for orals whilst slowly getting more ill. First to go was my digestive system after being diagnosed with Ulcerative Colitis, then reflux, then bile reflux which had me throwing up in a ,most painful manner on a weekly basis.
Then by chance I came across an article about Greg Jefferys and how he went to India to purchase an oral treatment. Guided by his success I ended up purchasing generic harvoni from a compounding pharmacist at Kingswood for $2300 (12 weeks supply)
Diagnosed Hep C 2013
Geno Type: 1a
Treatment: Naïve
Cirrhosis
F4
2015 GGT 227 AST 79 ALT 89 Platelets 88
2016 Treatment Generic Harvoni Finished 29 March 2016
GGT 30 AST 19 ALP 67 Platelets 91
Qualitative Test Results April 12
Hepatitis C NAT (NA): Not Detected
P.C.R Test for Hep C 4th July: Negative
Virus Free
stewart.henstock@hotmail.com11 January 2016 at 9:28 am #8639Well good luck, man!
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. 3,300,000Started 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. James11 January 2016 at 9:46 am #8644Good Luck Stew! I just received my parcel of magic pills a couple of hours ago!
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50H11 January 2016 at 9:56 am #8648Welcome Stew,
Great to hear you found the generic trail. How far into treatment are you? Or are you just about to start?
Hey Chejai, fantastic news!
Look forward to hearing both your progresses.
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
11 January 2016 at 11:57 am #8668Thankyou!
I have been on Sofosbuvir and Ledipasvir – 2 tablets – for a week now and have noticed no side effects except that my bile reflux has become a lot worst. I have been taking Nexium with the Harvoni and have to take Ursofalk – Ursodeoxychloic acid – twice a day to help with the bile reflux..
It seems to be working to some degree – just don’t know how it will affect the potency of the Harvoni – if at all
I still feel very fatigued and wake during the night with burning sensations, heart palpitations and abdomen pain. I would be lucky to get 4 hours sleep a night.
Diagnosed Hep C 2013
Geno Type: 1a
Treatment: Naïve
Cirrhosis
F4
2015 GGT 227 AST 79 ALT 89 Platelets 88
2016 Treatment Generic Harvoni Finished 29 March 2016
GGT 30 AST 19 ALP 67 Platelets 91
Qualitative Test Results April 12
Hepatitis C NAT (NA): Not Detected
P.C.R Test for Hep C 4th July: Negative
Virus Free
stewart.henstock@hotmail.com11 January 2016 at 12:17 pm #8669Hi Stew-H
I am onto my 9th week of Sof/Led. Only side effect was insomnia which has eased over time. I vaguely remember reading somewhere on the Forum or on the list of medicines that may interact that you shouldn’t be take meds for indigestion/reflux too close to the time you take your Sof/Led. I am no expert of course so hopefully someone else can confirm this for you one way or another. I take Pariet for heartburn/indigestion and take it in the morning and my Sof/Led at night around 8.30pm.
Good luck with your treatment. You will find a lot of support on this Forum.
Cheers Lynne
YMMV
11 January 2016 at 12:20 pm #8671Hi Stew, great to hear you have started treatment. Are you being supervised by your GP during treatment as these symptoms sound pretty severe?
M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!11 January 2016 at 12:51 pm #8674Hi Stew,
There is a Drug Interactions Calculator linked in this thread http://fixhepc.com/forum/drug-interactions/110-please-check-for-medication-interactions.html
Enter your Sofosbuvir/Ledipasvir combo then ‘next’ and select from the alphabetical listing of other drugs. Nexium is listed as Esomeprazole and the other is just listed as Ursodeoxycholic acid. I just ran those through it and there does seem to be some potential (orange) issues in each case (although they appear manageable) that you should discuss with your doctor or the liver clinic. Sorry, on iPad so difficult to post the report.
Hope this helps.
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
11 January 2016 at 2:53 pm #8683Hi Stew, I have stomach ulcers which have flared up considerably since commencing treatment, it was manageable after upping my dose of nexium ..then I added in ribavirin and ulcer discomfort became severe, the stomach ulcers just didn’t like that stuff at all, I stopped the ribavirin but it’s been a struggle getting my ulcers to a pre ribavirin manageable level, I’ve had to readjust my diet so the foods I’m eating are all low acidic, I had to trundle out a fold up bed and have set it up at a 45 degree angle so the Acid doesn’t rise too much when I sleep, anyways I’m on sof/dac but your on harvoni, I know that ledipasvir needs stomach acid, so you should at least be taking the Meds when your nexium dose is at its weakest?, anyways maybe Dr Freeman can advise when exactly you should stagger the DAA’s and the nexium. GL 2 U
Sean
GT 3, F3, Contracted 1993 Tx Naive
V/L 1,267,000 AST 67 ALT 65 6/10/15
commence Sof/Dac (Mesochem) 6/11/15
AST ALT normal 24/11 *
*V/L UNDETECTED 24/11*11 January 2016 at 3:48 pm #8685I have been taking Nexium with the Harvoni
Don’t do that.
Ledipasvir needs stomach acid for absorption and you will compromise treatment success with it by taking Nexium
Depending on what else you take you might be better off stopping the Ledipasvir, and changing it to Daclatasvir which does not have this issue.
YMMV
11 January 2016 at 6:54 pm #8689Good luck Stew. Hoping your symptons & sides improve and wishing you all the very best for a successful outcome.
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 HepC11 January 2016 at 7:58 pm #8692Great Stew!!
Congratulations from up north.
We are both Greg and James success stories.
What makes fixhepc different than all those “other” forums, is that the waiting here is generally for the medicine to arrive.
That is how it should be.
Good Luck!
Mike
Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtxG 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 2411 January 2016 at 8:12 pm #8694Hi Stew
I always get a buzz when I see people getting on treatment.
Congratulations!
SVR 24
11 January 2016 at 8:14 pm #8695Yay Chejai
Bring on the slayin!
SVR 24
12 January 2016 at 12:57 am #8721 -
AuthorPosts
- You must be logged in to reply to this topic.