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Hep C Discussion Forum -> New Members Area -> Hi Y'all - starting the triple treat on Wednesday
Post Info TOPIC: Hi Y'all - starting the triple treat on Wednesday
Dillo


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RE: Hi Y'all - starting the triple treat on Wednesday
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Hi Kelly,

I hope you got to see your Doctor today. I had the rash pop up on my ankles, arms back and about the other places yours did. It was usually worse on the weekend after doing my Friday night dart contest (Pegasys). I was working in a cold environment though and I know the cooler air (like outside at 30 to 50 deg) helped a lot.

When mine started to get worse of course it was on the weekend too and I called the GI on call and got about the same response. Nothing... not too concerned.  I use Aveeno daily moisturizer or a local cheaper brand moisturizer that has the same ingredients since I began treatment. I went through my usual treatment with my bath moisturizer then coating the spots with my skin lotion.

By Sunday I still had it but it wasn't as dark or well organized and I felt better about it. Later on Sunday afternoon low and behold the GI on call called me back and said I could use some Hydro-cortisone cream and or benadril which was basically  what I was calling to ask him before since I knew I wouldn't get anything much stronger until seeing the Doctor.

On Monday my NP called no less than 4 times to get me in to see the Doctor (I was sleeping after my Incivek). They looked at it and got me a appointment right away with a dermatologist who biopsied the rash, determined it was medicine related, and put me on some Triamcinolone Acetonide .1% cream. It took a while but it got it under control. It would still pop up in different locations but within a day or so with the cream, moisturizer, and bath wash, it would still be there but not as bad.

This was the treatment my Hepa Doctor had previously discussed with me.

The rash persisted but stayed under control until my 12 weeks of Incivek were over.

Hope you got to see someone about it today.

I am on the 15th week of 24 week treatment. Today they told me to stop my riba until they can take a day or two to try to get my red blood cells back up with procript. I think it was a 2.6. I had been getting them about every two weeks. Then they let it ride without a shot for about 4 weeks. I think I should have gotten another shot at my 12th week my RBC were at 3.14 or something (still not nothing to write home to mom about...but I'm not the Doctor)

 

I have been trying out the powdered Wheat Grass. I had heard it might help bring your RBC's up but obviously that is B.S. seeing where mine are.

I say trying it out because I am cautious as to using too much of it and besides it doesn't add to the taste of my fresh fruit smoothie. hmm

MY juicer isn't anything fancy and I usually juice something like carrots, tomatoes, apples. Save the juice and add it into a smoothie with frozen berries, nannas, mango, or peaches.

Reminds me of the old days with a daiquiri or fruity 'rita....which I obviously don't get to treat myself with anymorebiggrin

 



__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

Kellie


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oh man Jerry, what a horrible weekend. The tele rash on both elbows got worse. The rest of my body felt like it was going to break out at any time any where. yikes, the atarax stopped working, along with the Tea tree cream i've been using. I've been using a desonide cream .5%this stopped working too for this one. I called the drs. on Saturday morning - after 4 calls with no response, I finally get a dr. that has no clue as to who I am or what I'm going through. Here's an excerpt of the letter I sent to my main dr yesterday -

Hi Nurse Practitioner A,

My weekend sx was out of control with 2 severe rashes teleprevir on both elbows, others starting again on my buttocks (r&l) and the thighs once again. I did have much burning over the rest of my body. It felt as though the rash was trying to pop out all over. I took a whole Atarax and 1 Zyrtec in the AM.

 I also have been using the desconide 2x a day cream (which has stopped working as well as both the Atarax and Zyrtec). I have also been using the Atarax for anxiety and itch. This has stopped working well for the anxiety. The itch it still controls ok.

 The response from the after hours clinic team has been on the frustration scale of 1-10, a 25. I called my first call at 1030 Sat morning and asked for a call back from the dr. on call. I waited an hour with no response.  called back again with no response. I called again with no response. Finally at 1:30 pm they connected me to the GI on call, who knew absolutely nothing about my case. I had to explain again for the 4th time this day what was going on with me.  I simply wanted to know if I could take another 1/2 of Zyrtec to try and get this thing under control. She again did not really know how to answer this and I made my own personal decision on the phone with her to to this.

I can handle most of the anxiety with this treatment naturally, but when the rashes are unresponsive to conventional treatment and I'm not sleeping and when I feel as though I'm not being understood and listened to, it shot my anxiety level up to a new high. I took the other half of Zyrtec with no response. I think part of the lack of response of the Zyrtec and Atarax was that I was crazy with anxiety about feeling left out to dry and fend for myself on the weekend.

I do wish after the 3rd no response call they could have called you.

Later on in the afternoon I was at my wits ends with the anxiety from the itchness. I had to call again in the evening to the same doc. I discussed needing something stronger for the anxiety such as Xanax.

I had to tell her my own story AGAIN which was really hard because I was close to hitting the ceiling from have from the redness and burning, and craziness of wanting to tear my skin off.
Not feeling listened to and not understood.

She had to ask me all the HCV  medications and amounts I'm taking which lets me know she does not have a file of my medical history,or a clue of who I am.

She said she would have to wait until Sunday to call Dr. Pakros. I explained that I haven't even seen DR. Pakros and it may be a better idea to call you. She said she knows best who to call. She neither told me when to expect a call back on Sunday or how long I would have to wait.

Saturday night was HELL.

Once again not being heard.....It is 11:30 a.m. Sunday, with no call back. My life is on hold today again........ The poor quality of my life this weekend, I feel could have unavoidable.

I do believe and greatly desire to finish this treatment with the correct control of the side effects.

This weekend is a big F-.

On Monday I'd like to discuss contingency weekend plans for patients along myself going through this treatment. This is a weak area for this program.

During the week, you guys are responsive and great but honestly we're out in the cold on the weekends.

I'll be calling Monday first thing to come in and chat with you in person about this and let you take a look at the moderate to severe rash on my arms."

So that's the letter - I really feel like kicking some a$# when I go in. I know, I know angry medicine head....

Any of my fellow travelers, feel free use to you any portion of this letter to your doctor if you have had this kind of experience on the weekends. This needs to change...

So Jer - wheatgrass, hmmmm.... fresh or powdered? I've got a big ol' Champion Juicer - which I should be using every day. Shame on me for letting it get dusty.

Thank you for the shout out J - I really appreciate it.  So how far along are you again?



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Dillo


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Hi Kelley, I love my smoothies too. Lately been trying some wheatgrass in mine. Lots of people get a rash but only about 1% get one that might take you off treatment. As long as your Doctor is checking it might be ok. I had them most of the time on Incivek but not too bad until 10th - 12th week. Now not much rash but still itch like crazy. I have switched from moisturizer to a warm bath with moisturizing bath wash. What seems to work is just to pat dry and leave it on instead of rinsing off. Take care it's a long road but worth it!

__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

Kellie


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Hi Jerry,

14 lovely grams of fat per tablespoon - So I do about a 1 1/2 tablespoons. Sometimes I accidentally pour in a bit more to my smoothie. No worries. It seems to do the trick - I have a feeling I'm absorbing this well. The first 2 weeks I did whole milk yogurt, cheese. So much saturated. (I'm a vegetarian too). I figure I might as well try and do something healthy while I'm on this chemical ****tail. I'm sorry to say I've got a bad rash on both my elbows (?!) now. So I think maybe the rashes might be worse without the oil? I'd rather not find out at this point. I'm going to be in the dark for the most part this summer. I didn't figure on the rashes so quickly. Oh well....I do hope this helps Jerry. Take care,

aww

Kel



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Kellie


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Tanks, Biggyb for the acknowledgment - yes, if you can do it and you're still here and alive and relativity sane, then I can do it too.

aww



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Biggyb


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Kellie, i used to do that at about 12 weeks and think no way can i put up with this for 48 weeks, but here i am almost to week 44, One day at a time girlfriend.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Dillo


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Hi Kellie,

My  first 3 to 4 weeks of telapriver were the easiest. I thought I could take on the world. 

I have slowed down quite a bit since then lol.

How many teaspoons etc. do you have to mix with food with your "Udo's Oil to come up with your 20gms of fat for each meal?

I tried to look up a Nutritional Facts for it but couldn't find any.



-- Edited by Dillo on Friday 17th of May 2013 01:10:14 AM

__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

Kellie


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Hi again all,

My heart is warmed with all the welcomes - whew it's been the hardest 4 weeks of my life - the sx started the first week really bad - rash especially. My wonderful NP said that was a good thing  hmm -  At week 2 I was sitting on the edge of my bed wondering if I could do 24 more weeks of this. -  I had less than 42 vl at day 13. I'm waiting for my 4 wk results today. I'll check in again a lot sooner. Most days I feel as if I have 3 feet of cotton wrapped around my head - foggy and emotional. I'm using "Udo's Oil" as my fat and it's working fabulous for me. I think monounsaturated is the way to go. I'm thinking it's keeping the skin and migraine issues at bay. As an added plus I think I'm getting smarter - I'm actually thinking about becoming a contestant on Jeopardy biggrin lol hugs, Kel

 



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
ucbgal


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kellie,

     i'm new to this as well and recently joined the board. my treatment will begin in 1mo. and i wish you only the best. be strong and brave!

sandy,ucbgal



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Bloomster


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Welcome Kellie - lots of info and great people to be found on the forum.



__________________

My husband had genotype 1a, 46yo, started triple therapy (peg/rib/vic) 23rd July 2012, VL prior to treatment 14 million, UNDET 12, 24 weeks, EOT 24th June 2013, EOT +1.5 weeks UNDET, EOT +12 weeks & EOT +27 weeks UNDET; SVR January 2014
Matt Chris


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Hello Kellie and welcome

You will find the forum members are willing and ready to help with all things HCV and show great care in the process.

Hoping you find your way

Matt

image.jpg

 



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
tomyboy


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Joining everyone in welcoming you to the forum.  This is the best forum and full of supportive people willing to give you support and information.  Good luck in your treatment and wishing you much success. 



__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Biggyb


Guru

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Welcome Kellie.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
edmed


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hey Kellie welcome to forum. hope your treatment goes well with few to no side affects. keep up the fight and never give up.

 

 

 

51 yr old geno type 1a, started 3/1/13 triple therapy vl 7.9, wk 4 det vl 3.3mil



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Dillo


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Hi Kellie.

I'm late to the party but wanted to welcome you. This is a great forum with a lot of good people and information.

Most are more experienced than I and everyone is is helpful.

If you have any questions just ask.



__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

JIme


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Hey Kellie, welcome to the best place to be for people like us.

Good luck!

__________________

jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
Cinnamon Girl


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Hi and welcome, Kellie! smile  You`ve found a good place for support and info here, when do you start?  All the best of luck to you, hope it goes well.  Feel free to join in the discussions, and if you have any questions just ask.  ~ Jill

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Kellie


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Incivik. I'll be doing it one day at a time thank goodness. Thank you for the welcome.

 



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
mallani


Guru

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Posts: 3398
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Hi Kellie,

Welcome to the Forum. As you're Geno 1, I presume you'll be doing triple therapy with Victrelis or Incivek. We have plenty of Members on both so feel free to ask any questions.

Good luck and I hope your side effects are few. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Kellie


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Hey, just saying hey. Got all my medicine last Thursday (which is a whole lotta meds) in a big non marked brown paper bag.  Kinda comical... biggrin  I hope to be able to get support and give it too. My biography has the details of my hcv history. Nice to meet you all!



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
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