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Post Info TOPIC: Does treatment alter your genes?


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Observer wrote:

Obs, when I was growing up, my grandparents had oatmeal milk in the fridge all the time but it was sooooo sweet; it was yummy

What a bummer to be so allergic to soy cross contamination no Most of my allergies are dust and pollen and some foods that only cause stomach upset. I used to get rosacea flares from foods but now it's mostly if I get too overheated.  I guess we are "high maintenance" , but worth it

, yep, kamut is expensive wheat! I get the corn puffs on amazon for snacks , but at 5-6 dollars a bag i ration them. "Vitacost" has a lot of my special foods a lot cheaper including the corn puffs so next time I make an order I'll get a few bags.

[Arrowhead Mills Cereal, Puffed Corn, 6 oz.]

That is so sad about your daughters migraines, I hope it's not as bad now. Yea, it's good to have that early warning aura.

I do like eggs but don't eat them because I don't like to cook them , and...... they aren't very satisfying to me unless they're mixed in with potatoes and cheese ; Somewhere along the line my stomach got sensitive to potatoes after eating them boiled almost daily, I switched to pasta and all is well. I'll try potatoes again sometime. [with eggs and cheese ]

5


 

 

 



-- Edited by 5-1-18 on Monday 27th of September 2021 05:52:15 PM

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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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5  it does sound like you are having oat milk with your watery oatmeal..awesome!  I love oatmeal and now that youve mentioned itand the winter rains have started in BC it might be time to have some soon  

with my soy allergy  I cant eat anything that has been ground up in a factory because of cross contamination  so the only cold  cereal I can eat are puffysI mostly eat puffed rice (with a wee drizzle of honey) but sometimes puffed wheat or even  kamut  (which just seems  like an expensive wheat to me ). I used to be able to get puffed corn but havent seen it for years now for whatever reason    Too bad.it was yum 

migraines disbelief   one of my daughters had them as a young teen hormonal the Drs said. I believe we got  rid of them with feverfew . Like yourshers were also light related.she would often spend days in a dark room suffering 

the aura does sound interestingand Its great that you get a warning and can deal with it before it gets too painful 

When I feel one coming I take an Advil and my sweetie gives me a back and neck massage and luckily I dont get them much 

 

do you eat eggs? 



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4 years.... successful dragon slayer 



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Yes, the ALLBRAN is yummy but I only eat about a quarter cup layered with quarter cup of puff wheat and a 2 TBS of watery oatmeal with the almond milk and I add a little britta water to it. I like the liquid from the watery oatmeal [home made oatmilk :) ] Also with 5 almonds.
 
I can't eat walnuts either, I don't remember why , I can eat peanut butter once in awhile with no problems
I've stuck with the tums, more or less depending on the stomach upset; and a simethicone gel cap if things are too much for the tums to handle; mostly gas is my problem these days or eating too much.... baking soda has too much sodium for my body.
I don't use fake sugar either, I do love honey though.
 
I used to eat Havarti alot, I might try some again and some edam again....but I get the most from the sharp cheddar.
 
Those family dinners sound like fun
 
I hear ya about the allergy/sinus woes.....seems like my whole life I've had it. Now that I take about 3/4ths of a claritin daily I'm ok.....and I have to wear a mask to work or walk outdoors, also if I'm changing sheets,vacuuming,dusting, cleaning out closets etc, etc, etc...or I get a little asthma;  and now to the store! Oh well, at least I was no stranger to the mask.
 
I'm glad you figured out what triggers your migraines, it sure helps. Mine are triggered by light mostly, my first one was at work in the casino and the aura lasted 20 min, it was so cool.hahaahhaha, but scary till I realized what it must be [I had read about the migraine aura one time and by golly it fit to a T ]. They let me go home and the headache developed when I got home and I could drive myself home since the aura was gone. One advil calmed it down to tolerable.  I actually had one when I was in 8th grade that lasted 3 days, but no aura and maybe it was sinus....hmmm..
Now I see the aura right away and don't let it play out even if it is cool , I close my eyes in a dark place and sit still and it goes away.
 
I love dates! I was gonna get some 'date paste' for toast but grinding them with water is a good idea! I don't eat chinese due to the fat and sodium , I doubt they use olive oil :(  . But I do the same thing as you, I modify and substitute till I get the friendly version of any other foods I can't eat.
 
I can eat the same menu basically day in and day out.... maybe switching up a few things, but life is so much easier for me that way cause I cook in batches and freeze stuff.
 
Hope your day is fun today 
5

 

 



-- Edited by 5-1-18 on Sunday 26th of September 2021 06:27:01 PM

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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Im sorry to hear the psyllium didnt help you but all in all, you sound like you know your body and your limitation/triggers/fixes pretty well.

The allbran is probably pretty yummy too

I cant eat nuts..except oddly peanuts and walnuts.so I didnt get into the almond milk (one of my daughters loves it) I have also heard that oat milk is really light and deliciousIm glad you found the almond works for you

 

 I occasionally get heartburna spoonful of baking soda in water helps.. I really like Gaviscone (not sure how to spell it) butthe fruit ones use that awful fake sugar..aspartame or something..I get nasty headaches from that so I avoid it unless my tummy is really burning 

I love sharp cheddar tooand Asiago is another real winner. I love havarti and edam, and Brie sometimes tooI guess I love most cheesesthe only one that doesnt love me back is the blues (like Gorgonzola)  I cant eat the mold in them anymore 

one of our familys favourite lazy dinners used to be sliced apples, grapes,  a huge variety of cheeses and some cold cuts with homemade crustinis, and homemade hot pickled peppers (my kids all take after me in the spice ing department biggrin

sinus blahhhh I have finally found an antihistamine tincture that works for me I have choked on histamine for so many yearstried every spray and syrup and yadda yadda from the Drs ..to no avail so it is such a joy to be able to stop choking and having my nose runnnnnnnnnnnnnnn  

Migraines eeeeggggg awful awful things arent they?  I had them for years before I was diagnosed with HCV I didnt know what they were for yearsI called them my *sick* headaches cause I was terribly nauseated with them I rarely get them anymore and they are usually triggered by something Ive eaten

my list of allergins  has grown pretty vast.. 

I miss a few of the forbiddens but am pretty inventive about finding/making alternatives..like hoisin sauceI havent eaten real Chinese food for over 20 years but I just started making this sauce with dates and water (grinded into paste) and coconut aminos (fake soy) and some spices and hey presto my culinary  trained son says its better than bottledand now I can eat chicken mushu in a lettuce leaf yummm

 



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Hi Obs,

It sounds like you are having fun with your chilis

I love sharp cheddar and mozzerella; also the mixed  shredded cheddars that include vermont white cheddar from sargento I think. Lucerne also has one but I like the sargento better.

I tried the pysillium and it actually plugged me up more blankstare, prunes were working but made my stomach hurt so I did some research that led me to the allbran and whole wheat.

My stomach still gets sour now and then but nothing like the pain I was in last year. I don't really have heartburn anymore or acid reflux in my throat so I am thankful for that.

I still drink tons of water, one cup after another all day; I slow down a few hrs before bedtime tho

I can't eat spicy or drink coffee still but I use powdered carob with a splash of almond milk for my morning drink.

I tried goat cheese once and it tasted too salty to my taste.

I'm sorry to hear about your feet and wish that wasn't a side effect of the DAA's. 

I have slowly built up my stamina and strength and now am able to exercise daily as well as do projects and chores...even doing a little yard work to help out Mr since he is out there all day on his good days.

I still have sinus/allergy that I use claritin and salt nose spray ; but the good news is I haven't had a sinus infection since the casino cut me loose......I'll never go into one again

The hardest part for Mr is that no one wanted to hear about the "long term side effects" of the Harvoni. The doctors just don't care, but what can they do anyway except prescribe more drugs with more side effects.

Oh, I bought some aloe vera to try for when my stomach gets sour, and some coconut water but have not been brave enough to try them yet.

Thank-you for joining in and sharing here, it helps so much still to hear other people's journey with all of this.

I also have had 4 migraines since right after tx, since that first one tho the others have been mild...I start to see the aura and I close my eyes and sit in the dark for ten or so minutes and they don't get bad; I take a childs chewable Ibuprofen and I feel ok. The pills hurt my stomach so one day I decide to experiment and I was thrilled to find I can at least get some pain relief if I need it

Have fun with your chili's

5

 



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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So glad you can have your cake and eat it too, 5  

I probably mentioned it years ago, but one of the most amazing things I have ever found for constipation,ibs, diarrhea and all things gut related is psyllium husksa spoonful in apple or orange juice  (or water) and gulp it down (it goes glumpy so I only use a small amount of liquid) 

I know you seem to have your diet figured out but thought Id mention it.

that sucks about your Mrs nerve painI can relate though on a very minor level compared to what it sounds like he is suffering I  too am convinced it was an effect of my DDA but like you/him I feel with being stage 4 its better then alternative

mine is mostly in my feet sometimes even the weight of the blanket causes enough pain to wake me. Nervous system responds well to magnesium glycinate ..I take it every night before bed , also there are Qigong exercises/breathing  specially to help with the nervous system like 5/10 minutes a day can make a difference , also massage is good for nervous system 

 

What cheese do you eat for your weekly cheese? My sister was a cheese maker at a specialty goat cheese place, they make beautiful cheeses with lemons or chilli or flowers on them-my favourite is the chilli 'biggrin

 

speaking of chillisIve started harvesting all my beauties. Long cayennes, Anaheims hot dehydrated today grind to a  sprinkling powder tomorrow  (my sweetie doesnt love spicy spiced food so I add it at the table)

 



-- Edited by Observer on Thursday 23rd of September 2021 04:17:52 AM

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Hi Iris,

He wakes up in pain when he sleeps at night, horrible nerve pain in his legs and arms. After naps he is stiff and in pain. He does have spine issues but the nerve thing all started when he was on treatment [the nerve pain].

He's had mri's and xrays and blood tests, he was prescribed "lyrica" but is afraid to try it. He takes vicoprofen at night and aspirin in the day. 

No one has been able to diagnose beyond "muskleoskeletal" autoimmune disease and also spine problems. It's so sad. He is active on most days but on some days he just sleeps a lot, which at 72 isn't too bad. But waking up with nerves on fire is scary and ongoing.

The doc gave him steroid shots in his lower back and neck muscles and that made things worse. Once he had an epidural, years ago, and that seemed to help for awhile but he never went back for more.

We try to remember that he prob would have chirosis by now if not for tx...

 

I have always been able to eat bread and pasta but when I exchanged the white for the whole wheat my gut quit hurting and the constipation stopped. After the gallbladder came out I had some constipation then in May 2020 it got really bad and that's when my stomach felt like it was dying inside me.

Now I don't have pain and am regular again. Between the lack of gallbladder and stress it all went haywire; I'm so thankful the wheat is giving my guts what they need to operate well. I eat lots of fruit and veggies too and skinless chicken. 

I also get to eat white cake again , and I can eat cheese once a week with no problems. However I can not eat any other dairy without pain! I use almond milk.

I never used to be able to eat whole wheat before this cos it made the IBS flare, now it's my stomach's friend.

I do take a simethicone pill a few times a week and a cpl tums almost daily for gas but way fewer than I did since starting on ALLBRAN cereal and whole wheat pasta or pita. I eat small servings of most foods on most days.

I wish other members had stuck around to discuss this type of thing etc but it is what it is.

Take care and good luck. 

5

PS: sourdough bread has too much sodium in it for my body :( , but I do love it.



-



-- Edited by 5-1-18 on Thursday 23rd of September 2021 02:25:03 AM

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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Hey 5!, ya the gluten thing worked for me for awhile then now not so much. Sourdough bread seems to be tolerable, have you tried that?

What exactly is happening with hubs? 

Last couple days I have been having horrible nerve pain in my legs. Makes me wonder.

bb, 



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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hey Iris, how's it going?

As the days turn into years  I believe that Harvoni did cause some long term problems for my Mr.. He is in pain day and night most days. And it really did start with the tx of Harvoni.

I haven't wanted to believe it but it's just so coincidental. Of course we both realize he  was close to F4 so the tx did save his life...but still this is painful to watch.

I don't suppose there's any way to prove it or anything we can do but I have come to believe it was the tx that  caused his problems to flare up.

I hope you are doing better.

My stomach seems to have taken a good turn since I added All-Bran cereal and whole wheat pasta and pita......go figure, everyone is anti-gluten and it has made a big impact on my GI tract wellness.

5



-- Edited by 5-1-18 on Saturday 18th of September 2021 05:14:35 AM

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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Thanks for your insight as always Tig, much appreciated smile

I do have my 3 year coming up, and an ultrasound doesn't sound out of the ordinary even though they were telling me I wouldn't need testing any more of any kind, that doesn't sound right to me, but they will put up with me and see me if I want to see them. Although my last appointment was by phone last year, I will have to call and make arrangements for the US before my appointment. Should be in October, maybe I better call Monday! LOL I'm going on vacation on Wed! going to stay in a caldera wink Smoke from the fires near Tahoe have been making California Un-breathable....of course rain would be the best scenario, lets keep that moisture on the east side of the Sierras where the fire is and away from the east side where we'll be camping!

Please stay safe all you folks in the flood Zone! Ida looks like a mean B.

Blessings, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

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That was an interesting read, Iris. There were several additional articles listed at the end of this one as well. I understand why information like this could be unsettling, but we have a considerable amount of knowledge on the effectiveness of the DAA arsenal. My takeaway from this relatively small study group is, the incidence of HCC following successful DAA therapy is relatively rare. The study group also had cirrhosis, you didn't. The changes cirrhosis imparts on your liver can be profound, especially those with uncompensated cirrhosis. The risks, according to this article, appear to be possible, but minimal. The non-cirrhotic, treated with DAAs, doesn't appear to be something the professional community considered problematic, or likely. If you remember, all cirrhotics are instructed to have some form of hepatic imaging, every six months to watch for HCC. Aside from required screening, the LFT's generally go bonkers anytime something goes wrong. A hepatologist, or gastroenterologist, will most certainly be aware of this possibility, and monitor it. If you're no longer seeing a hepatologist, or GE, then present your concerns at your next appointment with your GP, or Internist. If you desire a form of imaging, an ultrasound is an easy and accurate test. Considering these professional reports, you shouldn't have any problem getting your insurance to authorize it. I encourage everyone with HBV/HCV to have periodic screenings to compare to their baseline imaging anyway.

Don't forget how difficult it was for you and others to get the DAA treatments. I went through the Interferon, Riba and NS3/4 drug, Victrelis. It was ugly and seven months of hell. It also took me another year to recover from it. There's a reason they stopped using that protocol, it was brutal. I was so sick from the treatment alone. I tried to get into a study with Harvoni, but was denied. We all eventually succeeded, but I was envious of all that got the DAAs! I will continue to encourage people to seek treatment with them. They continue to be very effective and if Big Pharm/FDA were worried they were a risk of causing HCC, they would've pulled them off the market.

I believe you are in a much better place without HCV. Had you not achieved SVR, or treated at all, the risk of HCC would be much higher anyway. Your overall health would be suffering as well. Remember all the extra-hepatic manifestations caused by unchecked HCV? I know you made the right decision!



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I found this, don't know whether to be discouraged or what but first could anyone translate the conclusion into laymen's terms for me? This is boggling my adhd brain. TY, Iris

source: Intrahepatic immune changes after hepatitis c virus eradication by direct-acting antiviral therapy - PubMed (nih.gov)

 

 In conclusion, removal of HCV infection after DAA-based therapy results only in a down-regulation of interferon-stimulated genes in non-tumoral tissues from patients with cirrhosis who develop HCC. These minor changes in the liver immune microenvironment are unlikely to favour HCC occurrence or recurrence after DAA-induced SVR.

 



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Yea Katy, it sure does! I use the strait leaf on occasion,  but it sometimes has a fragrance that can be a little unpleasant.

Strait leaf saved me once when I stepped on a charcoal briquette that somehow jumped out of the fire pit. The burning pain was intense and that lasted for days, but I would peel back one side of the aloe and place the juicy side onto the wound and hold it in place with a sock. INSTANT relief!! It was right on the arch and I think the scaring was minimal due to the aloe. I walked around with that squishy thing for weeks but it was the only was to avoid the pain.

Yea aloe!

Hey Obs! So we were shopping at different health food stores together! LOL biggrin

The herbal thing is confounding, I know some products don't even have real herb in it. Like lavender for instance,  I can snif out a fake lavender at 10 paces! Blech! 

Tig! aww Glad that shower thing was a hit. I think my cartridge needs replacing, but yea the shower nozzel spray is the BEST, I feel cheated when I have to use a shower other than my own evileye.

Bb, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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I always use Aloe, every time I went to the beach or when I got exposed to the sun, it soothes my skin. I use this aloe gel that I get from a Korean store. 



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Ya Iris, I know what you mean...its gone into mainstream stores... I too used to buy it in health food stores back when organic food was considered hippydippy kooky...now they sell organic food at walmart (I hear at least ..never having been in one haha) 
I also like the peppermint one best but essential oils are dangerous for dogs so I just buy the plain one for me and my doggy ...avoid the tea tree oil one at all costs though

there arent enough proper/strict regulations on a lot of stuff that is sold in Canada and the US. Germany regulates their herbal products... But here all the company has to do is dip the herb in water or whatever and sell it as a natural, green, miracle cure. 

Im super glad the Aloe is helping 

Tig  biggrin



-- Edited by Observer on Sunday 15th of August 2021 04:30:09 AM

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Iris,

We are still enjoying the Aroma Sense Vitamin C shower head and cartridges! Your recommendation was spot on. The shower head by itself has the best spray pattern and force of any that came before it. With just my wife and I, a cartridge will last a long time. Thanks again for the tip!

PS: Maybe it will alter my genes, too! wink 



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64 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 7+ years!

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Yea biggrin best stuff in the world! I never tried the tea tree flavor, only peppermint, rose and lavender I like the peppermint by far the best, and only the liquid, maybe I should try a bar, seems the liquid one runs off my hand sending it down the drain! The plain scent one reminds me of the liquid soap that was dispensed in elementary school. You can find it many mainstream stores these days but when I was first using it you could only find it at a health food store. Better get out there Katy! You'll be hooked wink

https://www.drbronner.com/

 

The aloe is working well so far, at least what hairs I do have,hmm the stuff makes it real shiny. biggrin

Bb, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Observer wrote:

Hey Iris,

thats good to know you have used dr. Bronners for as long as I have I love the peppermint one but have switched to the unscented one ... I use it for my dog, and also use it for my hair. The bars are the only hand/body soap I will use (unscented) 

I had a frightening toxic reaction to the tea tree oil one.
 I avoid the scented anything and everything in general.

I sure hope the aloe helped your head? 

Katy; Im not sure if Oprah was ranting about it, but I could imagine she might...its a very versatile and great soap.


 I must have to try that soap, like right now. 



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Hey Iris,

thats good to know you have used dr. Bronners for as long as I have I love the peppermint one but have switched to the unscented one ... I use it for my dog, and also use it for my hair. The bars are the only hand/body soap I will use (unscented) 

I had a frightening toxic reaction to the tea tree oil one.
 I avoid the scented anything and everything in general.

I sure hope the aloe helped your head? 

Katy; Im not sure if Oprah was ranting about it, but I could imagine she might...its a very versatile and great soap.



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Is that the soap of Dr. Bronners? that one time Oprah said "probably the finest soap in the universe  and she was obsessed with it? 



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Hey Obs, I forgot to say I have been using that Bronners soap since the late seventies, I love it being biodegradable and the minty freshness is great but I have rarely used it on my head because it leaves my hair real dull. I haven't tried it lately though so I'll give it a try!

at this point I feel I thrown about everything at it.

BB, Iris 



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That's good to know to hear some good news from you, Iris. Also, I think it's time for you to look for a new dermatologist. Blessings always, Iris. Have a nice day and enjoy life! ;)



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5!!! so funny you mention aloe vera as I had just got back from the grocery with some. I had a bottle of the stuff I had forgot at my moms about a month ago and it does feel soothing, although I have yet to see it restore any hair. 

Thanks for fixing that link Tig, now I guess the only way to know if its seborrheic dermatitis or lichen planus is to get a biopsy. Just seems so weird that this would show up right at the end of treatment. Which make me wonder how much of the damage done to our innards by the years extrahepatic conditions are irreversible. The other thing that's weird is it is just at the base of my skull, which seems nerve related in some way.

Hey Observer! I really understand that quandary, but I figured some amazing drugs have come down the pike in recent years, we can squelch AIDS conceivably cure HCV and so many other diseases. Do you know if there is much research into reactions for compromised peoples? I have a friend on the fence becasue of a bleeding issue, so she is hesitant. I just wish we know more. I guess more will reveal itself as time passes. I did get sick though with the second jab.

So back to the hair, Hoping the aloe helps.... seems the rose hydrosol is very helpful and I smell great. Also patchouli oil is supposed to help too so I'll try a dab of that as well every now and then. It helps real well with the dry cracking I get on my hands sometimes. Boy, I really smell great!

BB, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)



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Hi Iris,

Glad to hear you had your jab and didnt react to it.
Im feeling reluctant to get it because I have such a wonky immune system, autoimmune issues, and allergic reactions, neurological problems.. I am scared to get it but Im also scared to get the disease so Im in a quandary  

Anyhoo, Ive a friend with pretty bad and very painful eczema (not a hep C person) and I saw her yesterday and asked how her hands/ arms were and she was very excited to tell me she just started using a new soap and they are healing...like within a few days they are healing

Its called dr bronners..she is using the peppermint one...its a Castile soap, I think the company is run by the grandson of the guy that used to sell it and his fervid religious beliefs as one of those travelling wagon medicine man. 

my sister and I have been using that soap since we were teens (so almost 40 years ) Its pretty versatile, we have used it for everything from laundry to teeth brushing to shampoo...so maybe that would help you (at least with the itching) 

 



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Iris,

Im sorry that link was broken, but was able to post the article in a pdf format. This goes deeper into the subject of HCV extra hepatic manifestations. i hope it brings some additional insight and answers a few questions for you.



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Iris, I'm happy to hear you did well with the shot.

Have you tried aloe vera on your scalp for soothing? Just a thought.

I hope this clears up for you

5



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Hey 5 smile, you're probably right about all the long term damage, I was multiplying those little effers for almost 40 years and sadly (eh-hem) I guess age is something to consider aww, It's confounding when your brain thinks like a spring chicken but the energy output and body wrinkles tell different! hmm.

I'm better from the shot and frankly it was a major weight off my brain, I'm so happy to have been able to meet in person with my people/group and I don't have to be so freaked out about having to run errands. The mask doesn't really bother me when visiting stores, and I have always wore one when in the stores even when they had eased up. I did worry about how the shot might affect us who have had treatment. So far so good!

@Katy yeah, been to the dermatologist many many many times, Think it might be time to find a new one. My guy went to be a dr without borders about 3 years ago and the rest of the staff seems clueless even though there are like 3 dermatologists there, Maybe they're in training. I don't know.

Hi Tig, Thanks, that is frightening to hear about the newer DAA's being less helpful in the long term with regards to HCC, course that was my biggest fear with the HCV. Do you think we will need booster treatments? ANywho...can't read your link, it is not working. Can you fix it? thanks..

so ...I've added rose hydrosol to my hair/scalp treatments, even if it doesn't work it smells great!! I bet it's internal... like all the topical in the world isn't going to help. 

I want to try lemon water, maybe my ph is all off. Why do lemons have to be so expensive?

Blessings, Iris

 

 



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60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

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Hi Iris,

I’m sorry these issues are affecting you. We all hope(d) to witness a complete elimination of the health challenges we all faced. I’m convinced that many of us have achieved good progress, but there seems to be a lot of lingering problems and questions. There is no question, our immune systems were adversely affected, some more than others. The extra-hepatic manifestations caused a number of issues, some more difficult than others. There are professional articles that discuss the gene related changes occurring during treatment by the old drugs, Peg/RBV/+NS3/4 Inhibitors and the latest DAA’s. As I understand, from reading several articles, most changes revert following EOT/SVR. There is evidence that DAA’s provide less long term protection against HCC in patients with cirrhosis than the old treatments, but SVR isn’t impacted. That should encourage people with cirrhosis to stay current with their annual ultrasounds. The extra hepatic manifestations often linger.

Here‘s one article that goes into some detail. There are many others. 

Xtra Hepatic Manifestations



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This is something interesting. Thank you for sharing, please keep us posted about this. Also, have you reached some specialists? 



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I have not had anything going on after tx that would cause me to think this.

Also, for a long time, my Mr. thought he had got an autoimmune disease from tx. With tons of testing we have concluded he is just getting old. His RA factor was high way before tx began. 

Tx may have caused things to flare up but was not the cause. Only after MRI's did he find out all the stuff going on in his spine/bones that are the main factor for all his pain; so that is age and injury related.

IMO, just having HepC for all those years probably did more damage than any of us could imagine.

In my own body I always have stomach issues :( . I've always had indigestion but never before like I do now... I can manage it well enough and don't want to go have invasive tests done because I won't be taking those acid reflux meds. I do well with 3 tums a day and a simethicone capsule a few times a week along with only eating what my stomach likes. My hope is that it's my body trying to live without a gallbladder , but it's been gone almost 2yrs now and this didn't start up till may2020 , 6months after it came out and that was when the whole country shut down due to covid. 

I am still afraid to take the covid shot; I worry I will have side effects that cause more problems. We don't go out except to grocery stores and doctors. We double mask all the time and are thankful the masks are back even though sad for the spike.

For us , the tx didn't seem to bring on anything that wasn't already there, but I am so sorry to hear you are going through this Iris. Maybe you are allergic to something you eat or use..... I have lots of allergies.

Keep us posted on this Iris, also........ did you recover from the covid shot and get the second one? Hope that didn't make your hair fall out :(

5

 



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Ever since about 2 or so months after my treatment I started getting a itchy scalp. It has progressed and gotten worse since then, and I'm coming up on my 3 year blood draw so it has been going on for nearly 3 years now. It has made my hair fall out to the point you can see my scalp a few inches beyond my hairline. And it just isn't growing back. So I've been looking up the reasons of this sudden eczema that isn't going away and one reason is if your genes were altered. 

I feel like I tried many remedies, the derm gave me an Rx shampoo and a cream that did little and I felt I was saturating my self with more chemicals. Stuck with it for months though. So I've also tried cider vinegar rinses as well as some topical applications with cotton. That helps initially but then a day or two later it flairs up. I also tried a variety of essential oils mixed with witch hazel that makes my scalp feel better temporarily, also tried rosemary sometimes applied directly which is supposed to be a great hair restorer...that doesn't seem to help at all. I have even tried a few rounds of Biotin.

The derm said I could try Rogain (For men, because it's stronger?) but crap, I heard that is also hard on the body.

my bottom line question is newer DAA's gene altering?

thanks, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

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