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Author Topic: because genotype matters, type 2  (Read 13121 times)

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Offline petra

  • Member
  • Posts: 47
because genotype matters, type 2
« on: October 29, 2014, 09:21:08 am »

I was diagnosed with Hep C 2 a few months ago. Have recently started Sovaldi and Ribavirin. Gilead, through their Momentum Program. It is covering "half" of the cost. 12 weeks is about 33 thousand. I am in Canada.
I would appreciate any anecdotal info regarding this treatment or experiences with the disease itself.
I am a 59 year old female, considered slightly underweight, don't smoke [stopped even having a glass of wine after being diagnosed], blood work normal... except of course for the Hep C diagnosis.


User Name: petra
Gender: female
Height: 5' 7" Weight: 118
Diagnosed: June 2014
Infected: unsure of when
geno type: 2
Biopsy Score:no fibro scan or biopsy
Pre treatment: 3.5 million vl, other blood work normal
TX start date: October 17, 2014
Treatment Protocol: 12 weeks of 400mg of Sovaldi and 800 mg of Ribavirin per day
Side Effects: fatigue, itchiness.

Viral load:
3.5 million at start of treatment
18 at 4 weeks
undetected at 6, 8, and 12 weeks.
SVR at 12 weeks after treatment

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: because genotype matters, type 2
« Reply #1 on: October 29, 2014, 11:43:45 am »
I am type 2b and on week 10 of sovaldi and ribavirin.  My biggest complaint is the on and off bouts with itching and the boohoos that come and go easily.  I also had normal bloodwork but for high hepc viral loads over many years.  As time went on (years) fatigue got more and more often, even some memory issues which I at one point contributed to age, but, I think it was hepc related.  Once the fatigue got to the point that it interfered with being able to work and have energy to do things I was ready to treat once sovaldi was approved and out there.

Offline petra

  • Member
  • Posts: 47
Re: because genotype matters, type 2
« Reply #2 on: October 29, 2014, 12:44:35 pm »
Thank you for the reply. The itchiness is happening, and is a concern. At this point it isn't keeping me awake although I am sleeping less. It is certainly down to the ribavirin because I can actually feel it intensifying about 25 minutes after I take my pill, twice a day. I have noticed that my emotions are heightened and I really have be careful to not be abrupt with people. Looking back now at my fogginess, lack of focus, and fatigue, I tend to implicate the disease. Since beginning treatment I have noticed a calming of my bowel function and less joint pain. These were things that I thought were caused, respectively, by emotional stress and relatively hard physical work, neither of which have back off. My viral load was high when I was diagnosed... I haven't any other info yet. About your itchiness... have the bouts increased in "itch" intensity?
User Name: petra
Gender: female
Height: 5' 7" Weight: 118
Diagnosed: June 2014
Infected: unsure of when
geno type: 2
Biopsy Score:no fibro scan or biopsy
Pre treatment: 3.5 million vl, other blood work normal
TX start date: October 17, 2014
Treatment Protocol: 12 weeks of 400mg of Sovaldi and 800 mg of Ribavirin per day
Side Effects: fatigue, itchiness.

Viral load:
3.5 million at start of treatment
18 at 4 weeks
undetected at 6, 8, and 12 weeks.
SVR at 12 weeks after treatment

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: because genotype matters, type 2
« Reply #3 on: October 29, 2014, 02:24:26 pm »
After a few weeks the symptoms will probably increase. Drink plenty of water and it will help with the itchy. I don't take anything for the sleep or anxiety but there are items for that. Perhaps ask your Dr.
Be thankful you are on 12 week, I am on my 18th of 24. After 14 weeks it has become dreadful for me. Ribavirin is not an easy drug.

Offline Bucky

  • Member
  • Posts: 341
Re: because genotype matters, type 2
« Reply #4 on: October 29, 2014, 03:30:04 pm »
Hello my "Itchy" friends,
I had the itchy ankle syndrome (IAS) and I used Benadryl extra strength gel. It is wonderful if you have a localized area. I was prescribed Visteril 25mg but it KOed me so I did not use it again.
Bucky 
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: because genotype matters, type 2
« Reply #5 on: October 29, 2014, 05:54:15 pm »
If you want to use something more natural I have found that washing with natural dead sea salt soap helped immensely.  Afterward I use Aveeno Baby 24 hour moisturizer with colloidal oatmeal.  I use the baby one as it is more natural with nothing in it to aggravate our highly sensitized skin.  I found the itchness got less after 4 weeks and then it started up again on the 9th week.  So I am back to it again lol.....at least I had a few weeks of very little itch and no rashes.  As to the sleeping, it comes and goes.  Some nights I sleep well and others I do not.  I do find that I get tired very easily and will cry if I see or hear of anything sad, serious boohoos for sure.  When I had some spots that really itched and even had some little bumps I used the Aveeno concentrated anti itch lotion.  It is a LIFESAVER, it works GREAT.

Offline Mike

  • Member
  • Posts: 999
Re: because genotype matters, type 2
« Reply #6 on: October 29, 2014, 06:17:34 pm »
Hi Petra,

I treated with PEG and RIBV for 48 weeks about 15 years ago and, although the treatment kicked the crap out of me, I didn't have any issues with itching.

I completed a 12 week course of PEG/RIBV/SOL in April and had some issues with the itch. Since I didn't have any itching issues when I treated with PEG/RIBV 15 years ago, I attributed this (the itch) to the Sovaldi. I didn't use  Benadryl, as it makes me tired and I was experiencing enough fatigue from the treatment.

The treatment worked and I'm now cured of Hep-C.

I never realized how much Hep-C impacted my quality of life until I got rid of the virus. I have a lot more energy, have become a lot more social and the brain fog went away.

Of all the benefits from clearing the virus, the best, at least for me, was getting rid of the Hep-C fog (generally caused by the chronic fatigue).

It's hard to explain; but I have a lot more clarity of thought and mind, and I'm 'quicker on my feet.'

I hope everyone experiences this - that is, clearing this virus which clears the mind.

Best, best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline petra

  • Member
  • Posts: 47
Re: because genotype matters, type 2
« Reply #7 on: October 29, 2014, 06:26:38 pm »
For sure I should be drinking more water. Have to get with the program.
Tomorrow I will stock up on the products that have been suggested. I will have to keep working so I will prepare myself as best I can. Thank you all so much for the advice, it is hard to find any locally. My family doctor admitted to knowing just about nothing about Hep C. The reason I have managed to even be on this treatment has been by educating myself and contacting Gilead directly.
And Mike, good to know that besides preventing liver damage [or more liver damage], getting rid of the virus could mean feeling better generally. Hope is a good thing.
User Name: petra
Gender: female
Height: 5' 7" Weight: 118
Diagnosed: June 2014
Infected: unsure of when
geno type: 2
Biopsy Score:no fibro scan or biopsy
Pre treatment: 3.5 million vl, other blood work normal
TX start date: October 17, 2014
Treatment Protocol: 12 weeks of 400mg of Sovaldi and 800 mg of Ribavirin per day
Side Effects: fatigue, itchiness.

Viral load:
3.5 million at start of treatment
18 at 4 weeks
undetected at 6, 8, and 12 weeks.
SVR at 12 weeks after treatment

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: because genotype matters, type 2
« Reply #8 on: October 29, 2014, 07:19:56 pm »
Tess,
I tried your soap and lotion recipe, it worked for a few weeks, then it did not work anymore. I changed to taking the Sovaldi in the evening, and I am sleeping better now.
Petra,
In my 44 year experience with Hepc and Doctors, is most don't read up on Hepc and prescribe the harshest teatments. Till now the trials are getting more publicized and the hepc patient is more informed. I think Doctors don't like it when a patient has knowledge, at least the ones I saw. I went to a Natuapathic Doctor that was also an MD. She was great, in fact I think female Drs. care more.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: because genotype matters, type 2
« Reply #9 on: October 29, 2014, 07:31:20 pm »
When it felt like it was not working as well I got the concentrated anti itch lotion which is listed for allergic itches and even soothes chicken pox rashes and itches.  I had trouble getting it as only one Publix carried it and it was a little pricey.  I found it and the soaps for half price at Vitacost.com (where I buy whole stuff and have for many years).  As for the Baby moisturizer lotion I use after shower there is a DG  brand that has same ingredients as Aveeno (Dollar Store) for half the price also.
My gastro does not seem to be interested in feedback lately as I never see him, just go in for blood work every 4 weeks.  And he does not check viral load till 4 weeks after compettion - says in his experience and opinion that is when it counts and why should patients pay for the PCR since it it the most expensive one if not necessary.  Oh well, what can I say - lol - its his show.

Offline petra

  • Member
  • Posts: 47
Re: because genotype matters, type 2
« Reply #10 on: November 01, 2014, 10:42:47 am »
The itchiness is backing off but I will be more ready to deal with it's return now that I have some products on hand.
I got a phone call from the nurse practitioner at the liver clinic asking how I was and letting me know that my blood work indicated a low viral load after one week of treatment [I just ended week 2]. It started out high so I'm pleased.
My nearest and dearest have asked if I will have to keep taking the drugs for the full 12 weeks. Of course I explained that one in the affirmative! I know they are worried about the effects of the drugs.
I have to be careful to not cause them undo worry AND, at the same time, learn to accept help when it is needed.
User Name: petra
Gender: female
Height: 5' 7" Weight: 118
Diagnosed: June 2014
Infected: unsure of when
geno type: 2
Biopsy Score:no fibro scan or biopsy
Pre treatment: 3.5 million vl, other blood work normal
TX start date: October 17, 2014
Treatment Protocol: 12 weeks of 400mg of Sovaldi and 800 mg of Ribavirin per day
Side Effects: fatigue, itchiness.

Viral load:
3.5 million at start of treatment
18 at 4 weeks
undetected at 6, 8, and 12 weeks.
SVR at 12 weeks after treatment

Offline Doluska

  • Member
  • Posts: 86
Re: because genotype matters, type 2
« Reply #11 on: November 01, 2014, 06:15:32 pm »
Hi! I started on sovaldi/ Olisio and ribaverin on October 24. This is the strange combination as I can see. People on forum are on sovaldi and one of mentioned above med's. Why my doc decided to put me on 3? He told me that this is hire probability of cure. The biggest problem is that all of us are guinea pigs, there is not enough data and not enough methods of fighting side effects. So.... Here we are helping to each other. I am in Canada and getting the med's was another story. It took me 2 month of fighting, begging, intriguing ( yes, yes!), to get them. We were ready to take loan from the bank, when thankfully got  med's from industrial alliance and as a companionate present from Olisio. It was a big surprise for me to learn that there are side effects! Nobody told me! How about it? I am after 2 open heart surgeries and cancer survivor. What I am talking about? Take good care of yourself, watch doc's like a chock , and be optimistic. We all gonna cure!!!!!!!!

Offline DesertGuy

  • Member
  • Posts: 134
Re: because genotype matters, type 2
« Reply #12 on: November 02, 2014, 06:25:19 am »
We are guinea pigs--undocumented ones. Thru this forum I have learned that in testing, 13 people with my genotype were tested with my treatment. Wow--a whole 13 people. I wonder how many that have finished the treatment this year have been documented. Would the percentages change if they were?

Offline petra

  • Member
  • Posts: 47
Re: because genotype matters, type 2
« Reply #13 on: November 02, 2014, 07:10:48 am »
Hi Doluska, I am in Canada too. My experience getting the drugs was different. I could have gotten more funding through the government but because of my work I had to time my treatment... in other words I was in a hurry, so I opted to go with just the funding from Gilead for the Sovaldi, which cut the cost by half. A few months ago the standard treatment where I am was Sovaldi , Ribavirin and Peginterferon for 6 months for your genotype... which I believe is 1b. With your other medical issues and the rapidly changing medical landscape, I am sure there are conflicting medical opinions about treatment and everyone is playing catch-up.
Hi Desert Guy, we do seem to be on the front lines. Maybe we could start organizing on this forum by genotype to begin with. Since the treatments are genotype specific.
User Name: petra
Gender: female
Height: 5' 7" Weight: 118
Diagnosed: June 2014
Infected: unsure of when
geno type: 2
Biopsy Score:no fibro scan or biopsy
Pre treatment: 3.5 million vl, other blood work normal
TX start date: October 17, 2014
Treatment Protocol: 12 weeks of 400mg of Sovaldi and 800 mg of Ribavirin per day
Side Effects: fatigue, itchiness.

Viral load:
3.5 million at start of treatment
18 at 4 weeks
undetected at 6, 8, and 12 weeks.
SVR at 12 weeks after treatment

Offline Doluska

  • Member
  • Posts: 86
Re: because genotype matters, type 2
« Reply #14 on: November 02, 2014, 08:01:43 am »
Hi Petra! We all in the same boat, I am happy for you, that your start is less complicated, and i am sure that this giving a better chance for healing. The only thing that I know about my treatment - that it somehow experimental, because my doc is professor in university and have research study unit in one of the central hospital. The dose of Ribaverin is not in full, I will get only 3 tab. Instead of 5.  Anyway, it is only 12 weeks from our big and beautiful life!!!! Let's support each other and hope for the best! D

Offline petra

  • Member
  • Posts: 47
Re: because genotype matters, type 2
« Reply #15 on: November 02, 2014, 09:03:42 am »
Doluska, it sounds like you are in good hands. We are certainly close in our treatment start dates! It is comforting to have company on this journey.
User Name: petra
Gender: female
Height: 5' 7" Weight: 118
Diagnosed: June 2014
Infected: unsure of when
geno type: 2
Biopsy Score:no fibro scan or biopsy
Pre treatment: 3.5 million vl, other blood work normal
TX start date: October 17, 2014
Treatment Protocol: 12 weeks of 400mg of Sovaldi and 800 mg of Ribavirin per day
Side Effects: fatigue, itchiness.

Viral load:
3.5 million at start of treatment
18 at 4 weeks
undetected at 6, 8, and 12 weeks.
SVR at 12 weeks after treatment

Offline Doluska

  • Member
  • Posts: 86
Re: because genotype matters, type 2
« Reply #16 on: November 02, 2014, 10:43:37 am »
Oh, totally forgot! I am taking pills after meal, but after taking the med's, I am eating cracker with peanut butter. I got this advice from another forum, and sounds like a good advice. My coordinator advised me to take vit.D and vit. B complex. Vit. D in drops, two drops on the thong every morning. Hope it will be helpful. Good luck! D.

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: because genotype matters, type 2
« Reply #17 on: November 02, 2014, 11:20:21 pm »
I eat some mild cheese when taking the ribavirin and it works well for me.  I just started week 11 of 12 today and will have some blood work later this week.  And then I will have a final blood work 4 weeks after I have finished.  If all goes well my primary doctor will then be the one to check my blood work regularly.

 


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