Aa
2 year PCR pending and survival tips for newbies
Howdy Happy Heppers!
Dang, its been a while since I poked my nose in here...I'm Melinda, -I was one one the 2007-08 "treatment groupies" with 3A, Hep C dx in 2005 (dirty needle stick) and a viral load of 465,000. I did seven months of naturopathic txing (Sho-Saiko-To, nutritional support, liver happiness prep, etc.) before I went into tx. At week #4 I was RVR and have been UND since and now I'm waiting on my 2 year post-tx PCR! During tx I hit 8.5 HGB and 26 for HCT while battling interferon-induced thyroiditis (meds helped control the symptoms). No rescue drugs for the anemia, but the Dr tried to take me off tx at 20 weeks. My thyroid levels had "flipped" to hypothyroid at that point (meaning the thyroiditis was over) so I felt the anemia wasn't going to worsen. (Unbeknownst to him, I halved the riba and kept taking the peg for the next 4 weeks -I wasn't going to take any chances just because a Dr was afraid of a potential lawsuit).
So, to all of you newbies, I offer a few MARVELOUS treatment survival tips and advice that worked well for me...
#1 -Don't color treat or perm your hair while txing -it will fall out faster and WILL NOT look better!
#2 For the dry mouth/leather tongue thing at night :Oragel mouth moisturizer gel. -its not expensive, doesn't taste too bad, and because it has a gycerine base, it lasts for hours.
#3 Don't drink just water -drink green tea, fruit juice, popcicles, lemon water (my favorite was ice water with limes in it), d-caf iced coffee, or even hot liquid jello when your tummy is upset and you can't eat).
#4 For dry, itchy skin Aveeno after-bath body oil is very nice. Bath in warm (NOT HOT) water, apply the oil, rinse, and PAT dry...
$5 If your mouth or tongue gets super sore, there is a prescription treatment called "Miracle mouthwash". This is heaven in a bottle for those suffering. -It has nystantin (for thrush/yeast overgrowth) and lidocaine (numbs the soreness, and something else in it)
#6 Get copies of all of your labs and keep them in a binder. Take them to your Dr appts. This way, if you are seeing more than 1 Dr. you have copies just in case they don't. -Additionally, you can track your progress (or digress) and be an advocate for yourself.
#7 Ask questions and argue with your Dr if you think you're being "blown off" -don't just sit and suffer. Drs treat "squeaky wheels"
#8 If you miss a med dose, don't panic. If its riba, missing one dose won't ruin your treatment. It is fat-soluble and stays in your system for weeks. If it's interferon you're late for, take it as soon as you remember. The interferon is "peglated" (meaning the interferon is suspended in PEG -polyethylene glycol) which tries to make it last as long as possible in you body, but after a few days, it poops out (for most about 4 days).
#9 Eat a few tablespoons of ice cream (or something else with a bit of fat in it) with your riba doses. It is easier on your tummy, it is absorbed more evenly, and its a nice way to remind yourself you deserve a teeny bit of pampering! Also, daily vitamin B-complex and folic acid gives your blood building-blocks to fight against anemia.
#10 Pace yourself according to your energy level. Some days you will feel the pigeon, somedays the statue. You may have some you feel like doing house work and grocery-shopping, some days you won't have enough energy to pull your carcass out of bed to pee (but I recommend you do!) A dirty dish will not get any dirtier by sitting on the counter and will be waiting for whenever you do have to energy to address it! Little children are perfectly capable to bringing their turn-out laundry out of their rooms to the washer, and the older ones can sort colors. They make excellent (and willing) minions and are cheap to bribe!
Oh, and last of all...Be alert for IIADD (Interferon-induced attention deficit disorder). You'll notice it when you have an onset of "destinasia" (you go into another room and forget why) or you are busy all day, but can't for the life of you remember what you did...At one point, I actually forgot I was driving while on the freeway! (Not good! -I stopped driving more than a few miles after that until txing was done.) (((((((((((((((HUGZ))))))))))))))) ~MM
Dang, its been a while since I poked my nose in here...I'm Melinda, -I was one one the 2007-08 "treatment groupies" with 3A, Hep C dx in 2005 (dirty needle stick) and a viral load of 465,000. I did seven months of naturopathic txing (Sho-Saiko-To, nutritional support, liver happiness prep, etc.) before I went into tx. At week #4 I was RVR and have been UND since and now I'm waiting on my 2 year post-tx PCR! During tx I hit 8.5 HGB and 26 for HCT while battling interferon-induced thyroiditis (meds helped control the symptoms). No rescue drugs for the anemia, but the Dr tried to take me off tx at 20 weeks. My thyroid levels had "flipped" to hypothyroid at that point (meaning the thyroiditis was over) so I felt the anemia wasn't going to worsen. (Unbeknownst to him, I halved the riba and kept taking the peg for the next 4 weeks -I wasn't going to take any chances just because a Dr was afraid of a potential lawsuit).
So, to all of you newbies, I offer a few MARVELOUS treatment survival tips and advice that worked well for me...
#1 -Don't color treat or perm your hair while txing -it will fall out faster and WILL NOT look better!
#2 For the dry mouth/leather tongue thing at night :Oragel mouth moisturizer gel. -its not expensive, doesn't taste too bad, and because it has a gycerine base, it lasts for hours.
#3 Don't drink just water -drink green tea, fruit juice, popcicles, lemon water (my favorite was ice water with limes in it), d-caf iced coffee, or even hot liquid jello when your tummy is upset and you can't eat).
#4 For dry, itchy skin Aveeno after-bath body oil is very nice. Bath in warm (NOT HOT) water, apply the oil, rinse, and PAT dry...
$5 If your mouth or tongue gets super sore, there is a prescription treatment called "Miracle mouthwash". This is heaven in a bottle for those suffering. -It has nystantin (for thrush/yeast overgrowth) and lidocaine (numbs the soreness, and something else in it)
#6 Get copies of all of your labs and keep them in a binder. Take them to your Dr appts. This way, if you are seeing more than 1 Dr. you have copies just in case they don't. -Additionally, you can track your progress (or digress) and be an advocate for yourself.
#7 Ask questions and argue with your Dr if you think you're being "blown off" -don't just sit and suffer. Drs treat "squeaky wheels"
#8 If you miss a med dose, don't panic. If its riba, missing one dose won't ruin your treatment. It is fat-soluble and stays in your system for weeks. If it's interferon you're late for, take it as soon as you remember. The interferon is "peglated" (meaning the interferon is suspended in PEG -polyethylene glycol) which tries to make it last as long as possible in you body, but after a few days, it poops out (for most about 4 days).
#9 Eat a few tablespoons of ice cream (or something else with a bit of fat in it) with your riba doses. It is easier on your tummy, it is absorbed more evenly, and its a nice way to remind yourself you deserve a teeny bit of pampering! Also, daily vitamin B-complex and folic acid gives your blood building-blocks to fight against anemia.
#10 Pace yourself according to your energy level. Some days you will feel the pigeon, somedays the statue. You may have some you feel like doing house work and grocery-shopping, some days you won't have enough energy to pull your carcass out of bed to pee (but I recommend you do!) A dirty dish will not get any dirtier by sitting on the counter and will be waiting for whenever you do have to energy to address it! Little children are perfectly capable to bringing their turn-out laundry out of their rooms to the washer, and the older ones can sort colors. They make excellent (and willing) minions and are cheap to bribe!
Oh, and last of all...Be alert for IIADD (Interferon-induced attention deficit disorder). You'll notice it when you have an onset of "destinasia" (you go into another room and forget why) or you are busy all day, but can't for the life of you remember what you did...At one point, I actually forgot I was driving while on the freeway! (Not good! -I stopped driving more than a few miles after that until txing was done.) (((((((((((((((HUGZ))))))))))))))) ~MM
My doctor never mentioned taking riba with fat so I probably never did. I found this site at the very end of treatment and was a nervous wreck about the missing the fat, I cleared in spite of my doc.
I honestly never got the "itchies" real bad but neutrogena oil worked great for me.
I did loose what I thought was a lot of hair but it was mainly noticeable to me. I didn't color or perm but I did cut it short.
My commandments are: do what works for you!!
Denise
I honestly never got the "itchies" real bad but neutrogena oil worked great for me.
I did loose what I thought was a lot of hair but it was mainly noticeable to me. I didn't color or perm but I did cut it short.
My commandments are: do what works for you!!
Denise
Thank you for sharing your experience with tx. I'm sure there are a lot of "newbies" that will benefit. Good Luck on your 2 year results!
Sabe :)
Sabe :)
I like #10. During tx I found out that you can get away with mopping once every 24 weeks and the world won't fall apart, lol!!!
Best of luck with the 2 year post PCR results!!!!
Isobella
Yes, we must follow those 10 commandments:)
Trin, my son's hair didn't fall out either, most of it did
but not all. I know other ladies, that say the same as you.
Aveeno doesn't touch the kind of itching some people have
Trin, my son's hair didn't fall out either, most of it did
but not all. I know other ladies, that say the same as you.
Aveeno doesn't touch the kind of itching some people have
And the Lord in His great wisdom sent down tablets to Moses and said thus it is so, follow my 10 Commandments of SOC and all shall be well.
:)
:)
Hi Trin,
Hmm...I guess I was very unlucky then! -I looked like tweety bird! The crazy thing was, when it grew back, it was gray and looked like pubic hair! (Yikes!) (Thank God that all fell out and was replaced with thick normal hair..!) Perhaps I should rephrase it and say "do it your own risk"... LOL~MM
P.S. How are you now? Did you clear? 24 weeks was bad enough, -I can't imagine doing 72...URGH.
Hmm...I guess I was very unlucky then! -I looked like tweety bird! The crazy thing was, when it grew back, it was gray and looked like pubic hair! (Yikes!) (Thank God that all fell out and was replaced with thick normal hair..!) Perhaps I should rephrase it and say "do it your own risk"... LOL~MM
P.S. How are you now? Did you clear? 24 weeks was bad enough, -I can't imagine doing 72...URGH.
Nice of you to put YOUR thoughts to type and I'm sure as individuals each person treating can glean something from your experience. However, I have to disagree with you on #1.
I colored my hair throughout 72 weeks of treatment and it looked fantastic. It didn't fall out any faster and the best thing is it made me feel better about myself too.
Trinity
I colored my hair throughout 72 weeks of treatment and it looked fantastic. It didn't fall out any faster and the best thing is it made me feel better about myself too.
Trinity
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