Started New Treatment

[Swisher]

Thanks good ideas on the Rice Krispy treats. Thanks-Swish

[ole44]

good luck buddy third time here to hope it the charm

[Cali]

Glad to see you're heading into battle again Swish...I wish you the very best!  Minimal sides and SVR!

Cali

[Swisher]

Hey guys Started triple on Thursday. Felt wiped out a bit been having some issues with sleeping I'm sleeping but giddery it seems.  I am taking vertis with food but seems to leave a really bad after taste even after multiple bottles of water. But over all so far so good I guess. I go in to the DR for Labs in 2 weeks to see the process will give you a update then. Currently my time line is 8 4pm and 12pm and been working pretty well with that schedule. Hope all is well with you guys thanks for all the continued support.

-Swish

P.S Did any of you guys ever have dry mouth alot on this drug?? notice that alot even with drinking water all the time just curious.

[banarep]

I did the other drug, but I do remember reading about the bad after taste with boceprevir.

[TakkiC]

Swish:

Had the dry mouth to some extent. I always had water with me, which was a must during prolonged speaking. 

Food, water, candy, mints, etc. will temporarily subdue the nasty taste (dysguesia), but for me, it would come right back. Although it seemed like some chemical was being secreted into my mouth, I think it was actually a distortion of the sense of taste, i.e. it can't be washed down. It was omnipresent during the beginning, but I became less aware of it over time.

As the result of these taste issues, coffee lost it's appeal and spicy food seemed overwhelmingly spicy. I became drawn to sugary and rich foods. I was frequently unsure whether I had brushed my teeth before leaving the house in the morning.

During my pretreatment research, I read about the dysguesia and underestimated its impact. Compared to everything else, it's a rather tame side effect. Nevertheless, it could be quite annoying when combined with the minor nausea I had experienced most mornings and the breathlessness caused by anemia.

The good news about dysguesia is that it goes away immediately when you stop taking the drug 

Best wishes on your treatment. The PI's are extremely effective. Expect success!

 

[Janet L]

Sending the best to you Swish!  Dry mouth?  I have severe dry mouth!  I was on Incivik and developed Thrush which my PA gave me meds for.  After I finished the Incivik it went away for a bit and now after I started the Procrit it is back with a vengeance and also the Thrush is coming back.  Not even sure what drug is causing it but it does not get relieve from water, even though I drink it constantly.  I am rinsing with Biotene for dental care and sooth with Popsicles.

[Nookster]

Hey Swish,

With me the fowl taste subsided after a week or two although once and awhile when you burp you'll get that nasty taste.   Like TakkiC said, spicy food and salty food is 10 times as spicy and salty.  So I've ended that and like Janet L say's and I can't say this enough, especially in my case in regards to dry mounth,  Biotene, Biotene, Biotene mouthwash all the time, and they make the toothpaste too.  Man, its been invalueable.

[shelibelle]

Hey swish,

I do my tenth shot tonight.. not really any sides until I started the victrellis..  Best thing for the ick and dry mouth.... brush after every meal with a soft toothbrush, and swish with water throughout the day.. I know some ppl who get sores in their mouth, so take care of it right away. 

Drown yourself with fluids.  Whenever I fall behind, my sides incerease.  I take Gatorade and mix it with water, because straight water tastes like crap.  Orange juice is too tangy... so i water it down too..

I take my meds at 9, 5 and 1... so i know i only risk sleeping through the 1am dose.   I eat breakfast after my kids leave for school, and always aim dinner for 5 -530... it makes it easier to not forget your meds... (brain fog)

nothing tastes good at 1am... so i started drinking an ensure, or meal replacement shake with the 1am dose.  It seems to be working best for me... other foods were too sugary, too spicy, too hard to choke down.... and believe me... eat enough.  When I dont.. its like I breathe the medicine out after.. my throat will even burn... and the ensure is easy to go back to sleep after drinking... doesnt wire me up.  Besides, i could use the extra nutrients. 

and this week is the first week that i can manage a cup of coffee again (up to almost a half cup)  yayyy    I used to LOVE coffee...

Take care, and nip the sx in the bud if they show their ugly face.....

sheli

[ScaredyCat]

I feel for you all.  The drug I took also caused some taste changes.  I started drinking coffee with soy coffee creamer - I always liked it black (working in offices -couldn't stand dirty milk/sugar cups).  I got so addicted to the creamer I called it "coffee crack".  Once off the meds - I couldn't stand the taste of that crack -even the smell of it on Mr Scaredy's breath made me feel ill. I still cant stand to stir his coffee (he still uses it) then stir mine -rinse the spoon.

Keep up with the dry mouth -I had two or three little cavities even though I used a water pik every night and brushed all the time.

Good luck.
 
ScaredyCat

[Swisher]

shelibelle, yeah so your just a bit ahead of me. I'm on 7th shot today 2nd week on triple.  Yeah I've been doing pretty good on the schedule which is 8 4 12 but I have been off a few times by a hour but still in the window of 9 hours. But believe as long as we are not 2 hours before next dose we take the current dose as scheduled but I haven't gotten to far off on my schedule only 2x this week was at 9 1/2 hours on schedule but think it will be fine.

Glad your doing well on it so far. Just have to see how it goes from here go in next week for labs to see what all the drug is doing. Where your  labs pretty good your first report? Believe there looking for kidney function and other things mainly and your count levels.

-Swish

[shelibelle]

Hey Swish,

My labs are slowly taking a dip.  Platelets are low, wbc really low.  Even my sugar is starting to tank.   Overall,  I still feel ok though.  Not exactly ambitious, but still ticking.  I've only been late dosing once... by about 2 hours or so... and when I did take my meds, it sent me right to bed... blahhh

My liver functions are back to normal.  Its about the only thing on my labs not in the red.   And viral load - undetected 4 and 8 weeks so far.   These meds work!  Keep in touch. 
Sheli

[HepCMom]

Good luck! I'm thinking about starting round 3 also. I have an appointment at the end of the month to see if the time is right. Way to go on round three. Keep us updated about the new med you start on week 5. Keep positive and we will all be thinking of you.

[Swisher]

shelibelle, You where right. Went from 800k Viral load to 8k in 2weeks on the triple. Not to shabby aye :p. So hopefully will be clear by next labs we are hoping but so far so good. My labs where fine but everything is taking a dive on the general lab works but they are watching it.

HepCMom congrats on getting back in there on round 3 also. This triple does work. Wasn't a believer till I saw my labs this last week. This coming week is my 8th shot 3rd week on triple. currently plan is 24 weeks on triple / 48 weeks normal treatment rib / peg.

-Swish

[kathryn]

I'm newly diagnosed..just had live biopsy...inflammation a 2 and scarring a 1 to 2.  Doctor recommends treatment, but not ready. At what level, do I need to make the jump?  Do you  know anyone who didn't do the treatment?  Also, would like to wait for something in the future without the interferon.  Lots of questions..can you help.
Kathy