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2 year PCR pending and survival tips that worked for me...

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 (dropped my vl to 64,000), 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 -Color treat or perm your hair while txing at your own risk -mine fell out faster and DID 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

P.S. I posted this in Social as well, and thought folks over here would like to see it too. -I had A LOT of questions answered here, and a ton of encouragement when I was txing...Thanks for the support! :) ~MM
8 Responses
1391695 tn?1298143389
Thank you for this, I am printing this out, I am 3a, got VL down from 2.5 mil to 54,000, doing my scopes next week and will be treating soon.
I am scared to death but as ready as possible I guess, thank you for this list, I will need it I'm sure. Bree.
Avatar universal
Remember, this is a disease of DECADES and, any question you are brave enough to ask, there are probably 10 others who are too chicken to do so -so don't hesitate!
It's normal to be scared and worry about "what if", but if you arm yourself with knowledge (learn to read labs, know what is normal and what isn't) and realize that Drs do not know EVERYTHING, you'll do okay. If you have any underlying issues like clinical depression, bad teeth, a grumpy gallbladder, etc., get them stabilized before you start txing because, if you develop an infection while txing, you may have to stop and cannot restart where you left off. The treatment has a way of magnifying underlying conditions...
Make sure you have a good support group and a good liver Dr. Most GI drs don't know enough about hep C tx to be alert for the sides the txing or how to treat them if they happen. Good luck! As you probably know, 3a is pretty responsive to txing...:) ~MM
Avatar universal
Thanks so much my partner is actually 3a geno as well, undectected at week 2 and only 4 injections left.......your tips will be very useful and great to hear you are doing well
1391695 tn?1298143389
It's great to hear from you, a 3A woman who's already done it, and I have your list in my file. I have all my blood tests for past 6 years, I really do like my GI, he's a good caring Dr., I'm ready to start, I have a concern with my recent test Neutrophils at 1.4 and my Platelets at 140, that worries me a bit? before I start tx. I'll ask him about that when I see him next week for my EGD and colonscope. My doc said I am a great candidate, he said he was very OK with my labs, I just want to start to get this over with, I'm really petrified of that first shot.
Thanks for the help, Bree
1201433 tn?1329001237
i am new here, what wonderful advice, and a sense of humor, that is what will get me through this is a good sense of humor! thank you for your post, and good luck on staying SVR. mary ann
179856 tn?1333550962
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.

hahahahahha  :)

179856 tn?1333550962
Hope that made you laugh MaryAnn!
1391695 tn?1298143389
Mary Ann where are you again in your tx?
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