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One for the ladies in the house. 8 years 4 months ago #8946

Dear FFox, Please have your plan B ready to go, just in case.
I was warehoused and labelled 'mild' in the UK health system,
PlanB became Plan A and now I'm 2 weeks in and feeling so much better.
Not only that, I'm feeling cheerful, yes cheerful :cheer:
You read it right ;-)
This is a gift in itself after all the stress this virus causes,
It takes its toll.

Good luck with the PBS and keep your PlanB at the ready, just in case.

LG
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 HepC

One for the ladies in the house. 8 years 4 months ago #8953

Thats wonderful to hear LG. It's so nice to watch all the lovely people on here getting better!
I learn so much from you all. So many wise and kind souls here.

I think I need a plan B and a plan C.
There are two possible snafus...one, they delay the listing....the other, my specialists refuses to prescribe straight away because I'm "mild".
Or both, in a worst case.
But on the whole I am in a very fortunate position in every respect, being here in Australia.
So I shouldn't stress about it.
It's annoying though to put yourself back "in their hands" once you had psyched yourself up to take control.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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One for the ladies in the house. 8 years 4 months ago #8955

Hi ladies

I have had an email back from my specialist she recommends for dry scaly skin: fatty cream as a moisturizer and use aqueous cream as a soap substitute.

Many of the symptoms that have been described by are typical of PIS "Post Interferon Syndrome" ....Yes it has a name.

www.mayoclinic.org/drugs-supplements/int...effects/drg-20071328

Bloody dirty poison its unbelievable that its still being used today.
SVR 24
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One for the ladies in the house. 8 years 3 months ago #9033

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Hi girls, and welcome Flying Fox, Plan B is a great Plan yes, smart move. No point suffering any longer , and I hope the PBS moves quickly for you... #flower
Tina, that list of peg/inf is for real..I was in hospital and tubed up blah blah it really is a shocker. No looking back! Almost into week two of these wonder meds thanks to James and Greg..LG you have just passed your two week birthday yew!
I asked my local nurse about skin dehydration sx today because I am peeved my fantastic surfie girl arms (and after rebuilding post peg/inf I deserve to be proud) are looking really dried out at only week 2 sof/led grrrrr ..the nurse was extremely empathetic and she suggested Aveeno which has already popped up here, maybe Coral or Tina suggested it. :+1: :+1: :+1:

Last night I did not have any sweating, hopefully now out the other side of the initial 'getting used to tx' stuff, but I have thought up a contingency plan for the first few weeks if anyone else gets the sweats initially on the new meds... #love

I pop a few fresh T shirts beside the bed along with the mandatory two water bottles (no spilling that glass of water in the night if I use a bottle) and instead of having to get up and grope around for a fresh top in the night I now can just reach over and grab a fresh T and chuck the wet one across my room and zzzzz again. This is a gross topic but I hope that it helps somebody else to have a more comfortable night. It works for me.

I am loving the new clarity of mind that yes is real :cheer:

I have been thinking, wouldn't it be nice if the Hep orgs produced a little pamphlet or handbook devoted for women xxxx
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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One for the ladies in the house. 8 years 3 months ago #9041

I have been thinking, wouldn't it be nice if the Hep orgs produced a little pamphlet or handbook devoted for women


Good idea Ariel, HepC Trust? (if you visit?)
I'm sure an online downloadable one wouldn't cost much money, if any?

Hey, maybe we ladies can put one together and upload it on here, why wait?
Anyone have the time?
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 HepC
The following user(s) said Thank You: Ariel

One for the ladies in the house. 8 years 3 months ago #9060

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Hi All,

just a quick recommendation for the dry hair, and possibly skin. The Elemis frangipani Monoi oil is a beautiful product ( don't work for the company etc) it's not cheap but you only need a little bit. It's solid at room temperature, so you need to pop the bottle in warm water. But a few drops on your hair after shampooing and then rinse off with your conditioner. Makes the hair feel lovely for a couple of days I find. ( Also makes my skin feel really soft after a few drops in the bath. However I'm not sure if it would irritate existing skin conditions, but I think they use natural ingredients, so worth checking. I get mine on QVC. Anyone else used it?

Debs #love
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected
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One for the ladies in the house. 8 years 3 months ago #9113

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Debs, I'm going to try to get & try that product "Elemis franfipani Monoi oil", never heard of that before.Thank you.
I do think the Aveeno is very good.
I used it all through my horrible interferin tx's, it helped a bit.

My hair's still dry a lot of the time though, so am going to try to find the one you recommend , so thanks for that.

Hey Ariel,
I so agree with you about the dreadful Peg/ifn, , and to think my son's specialist wouldn't even consider even listening to me about the generic orals....BUT....DID want to push that poison Ifn on my boy.. :blink: .. makes me so mad. :angry:

Good luck Flying Fox. What state are you in? I'm in Sydney & my neighbour feeds the bats, see a lot around here.
x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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One for the ladies in the house. 8 years 3 months ago #9118

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Hi girls and thanks for the tips this is great #love I saw my cool as super empathetic GP this morning and showed him my dry arms and knees he was surprised how fast they've dried out, and he told me it will repair itself post tx, also my regular full on exercise being on hold for the last two weeks was going to dump my seratonin levels hence me feeling glum so I just went for a surf and feel heaps better. Yep a surf, crazy but it's my gymnasium.

I'm definitely turning the corner of settling into being on the DAAs yay
I noticed much more cognisance each 'takeoff' GOOD :+1:

I'm also keen on this "Elemis frangipani Monoi oil" wonder if it's online, must do a search. Yes CJ dry hair is a biggie post peg/inf and actually I lost conservatively 2/3 of my lion like mane and was left with a mullet do of frizzle as I mentioned earlier.
So far sof/led hasn't changed my hair thank gawd!
Re the idea of a little womens happy HCV pamphlet or handbook when we have all our ideas and sx tricks I am fine to do something to produce it but would like to collab
Are we agreeing that's a gap in the support tools for us? This forum is the only place I know where the initiative was taken and we started on our hormones, childbirth and have gone from there in our wisdom and sharing

I always think many heads are better than one
We need to have anything checked by a health professional too probs if we do put something together
Oral hygiene is one I would dearly love other ladies to discuss because I have swollen gums etc and there must be some knowledge better than this betadine mouth stuff I am using
Splashes x
Ariel
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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One for the ladies in the house. 8 years 3 months ago #9119

Thanks CJ! I am in Brisbane...lots of bats here...I have my own little colony out the back...though I don't feed them. I'd like to :D
But they keep themselves to themselves. Sadly, most queenslanders aren't very bat friendly. :/
Maybe once I've sorted this disease I'll become a bat carer.

Ariel, I can provide some advice on the gum treatment and dental things in general. One reason I decided to wait for the PBS is because I'm already spending so much money trying to save my teeth and gums. I'm sure it's all related to the hep and my digestive problems...anyway...big life savers for that are
1. Oil pulling with coconut oil.
2. Clove Oil ( try the Indian shops)...medicinal grade....mix it with a carrier oil...it's quite strong...but awesome both for healing and for pain.
3. Strong himalayan salt mouth rinses.
4. Tea Tree Oil (again quite strong), and Peppermint Oil.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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One for the ladies in the house. 8 years 3 months ago #9121

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"Ariel, I can provide some advice on the gum treatment and dental things in general. One reason I decided to wait for the PBS is because I'm already spending so much money trying to save my teeth and gums. I'm sure it's all related to the hep and my digestive problems...anyway...big life savers for that are
1. Oil pulling with coconut oil.
2. Clove Oil ( try the Indian shops)...medicinal grade....mix it with a carrier oil...it's quite strong...but awesome both for healing and for pain.
3. Strong himalayan salt mouth rinses.
4. Tea Tree Oil (again quite strong), and Peppermint Oil.[/quote]

Thanks babe! I have some black lava salt here from the Big Island Hawaii I wonder if that will do where did you find the himalayan salt?
Thanks so much for these tips my teeth are sore as
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18

One for the ladies in the house. 8 years 3 months ago #9124

Any good natural salt will do to make a salt rinse. Just need about a teaspoon full in a small cup of warm water, or really as much salt as you can get to dissolve.
Thats good as a general mouth wash, but if you want to draw infection out from your teeth and gums then I do recommend the oil pulling. I mix clove oil and peppermint with a tablespoon good coconut oil and swish that for twenty minutes a day. When you spit it out spit into the bin and rinse well, tooth brush, more salt water.
Or you can just mix the clove oil half and half with olive oil and use it to numb your gums, and teeth. Its a powerful local anaesthetic and reputed to heal cavities.
I know this all sounds like a pain in the ass, and it is, but gum disease is worse, and if I don't do all that it really kicks in.
Be interesting to compare teeth stories some time with you all, and digestion stories. Long term Hep stuff...
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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One for the ladies in the house. 8 years 3 months ago #9125

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teeth and gums.... mine are shot. in fact teeth, what teeth pretty much. 3 weeks into the first round of treatment on the old non peg barbaric interferon/riba in 99, I woke up one morning and all my front teeth were loose- never had been at all. went to get help/advice, they pulled them out, right then.I was 36. asked to get the drug company to pay for the treatment or some help, they said I couldn't prove it was related. we have a med/dental school here, and one really good gum specialist. went to him, he made it clear while I had my mouth full of his hands it was probably some personal moral failing of mine, as he had tested positive for HCV antibodies but because he was a far superior person with stronger will, he had been able to clear it himself. Not keen on them at all now. My hair fell out both times on int/rib too, at least thinned drastically, and when I just did 4 weeks riba this time was coming out again, but has stopped now. But one big difference for us women to the guys I have found- the whole horror of monthly periods, infectious blood escaping into the world somehow- really different way for us to have to deal with normal women stuff, my body has been my family's enemy.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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One for the ladies in the house. 8 years 3 months ago #9126

Wow ladies there are so many good things that have been suggested here and totally agree with LG that its valuable information for all that are about to begin treatment who are tx naïve - and those who are treatment experienced in recovery mode after Peg/Int and are now embarking on treatment with DAA's.

Oil pulling has been well recognised for hundreds of years and is proven effective in the management of gum disease (in particular with coconut oil as it has antibacterial properties).

I recall with clarity when I first found out I had HCV and finding out about PegIN and Riba I was terrified beyond belief and I don't think I would of been able to remain working in my current role. I don't think I've meet or talked to anyone who has done it that hasn't had any long term detrimental side effects as a result.. #flower

P.S I'm definitely going to hunt down this Elemis frangipani Monoi oil - it sounds friggin AH Mazing!
SVR 24
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One for the ladies in the house. 8 years 3 months ago #9131

I wonder how much knowing I had the infection for all this time has influenced my decision not to have kids. Probably a bit, although I've never had any significant doubts about that anyway.
It's certainly made life easier in many ways. I don't have to worry about infecting anyone, or supporting a family with low level chronic ill health. Knowing about it for a long time made me reform my life style early on and it meant I was never sick enough to seriously consider interferon...thank the goddess!
My GP still offered me interferon in the mid 2000s...even though my LFTs were fine. I hear they thought they had a better chance with the healthy ones! Vampires!
Ugh!
The whole last twenty years of treatment for probably millions of patients is basically genocide.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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One for the ladies in the house. 8 years 3 months ago #9132

flyingfox66 wrote: I wonder how much knowing I had the infection for all this time has influenced my decision not to have kids. Probably a bit, although I've never had any significant doubts about that anyway.
It's certainly made life easier in many ways. I don't have to worry about infecting anyone, or supporting a family with low level chronic ill health. Knowing about it for a long time made me reform my life style early on and it meant I was never sick enough to seriously consider interferon...thank the goddess!
My GP still offered me interferon in the mid 2000s...even though my LFTs were fine. I hear they thought they had a better chance with the healthy ones! Vampires!
Ugh!
The whole last twenty years of treatment for probably millions of patients is basically genocide.


Hey FF TOTALLY can relate here - I chose not to have children because of HCV but now since I'm on the road to killing this cockroach of a virus my thoughts of having a baby are returning - or maybe its just the hormones singing......??
Just need to find me a good man now lol :P ;)
SVR 24
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