Author Topic: Questions about new treatment (Read 25798 times)

willie g · « **on:** June 04, 2014, 10:06:32 am »

I'm Willie g from NY and I start my Treatment as soon as I see setup guy.I was wondering,are they using the new drug in NY in any cases it sounds rough from Mary see's comments.I am currently on Zoloft,clonopin lamictal temazepam and oxicontin .the first meds are for bipolar etc. The oxi is for multiple pains.I have had numerous surveys due to where I used to work-mental health.it seemed like I was a bouncer there.many injuries from that job and surgery's. My question is .I am in a lot of pain now due to hepc .high levels.if I am having this much pain now WITH THE OXICONTIN will the pain be worse when I start this and because I am already on psych meds will that help or worsen? The for your post marysee and if there's anyone who could answer that please do.the and I pray to the Creator you all do well.Wills g. 59 years of age the again

lporterrn · « **Reply #1 on:** June 04, 2014, 01:34:39 pm »

Hi Willie,
I moved your post to draw attention to it so you can get the response it deserves. Sometimes our questions get lost when we are all conversing with each other.

As to your question,

Quote

I am in a lot of pain now due to hepc .high levels.if I am having this much pain now WITH THE OXICONTIN will the pain be worse when I start this and because I am already on psych meds will that help or worsen?

, the answer is, it depends. First it depends on the hep C medication. If you are going to be taking an interferon-free regimen, such as the new meds in October or one of the current regimens that is for genotype 2/3, or your doc prescribes something off label, then probably not. You may even have improvement from pain since hep C is often implicated as a a direct or indirect cause of pain. Second, it depends on how active you stay. If you can keep moving and do those things that are suggested for pain management that help you stay mobile but don't exacerbate pain, then things might not get worse. Main thing is to be sure all the drugs you are on don't interact with the hep C drugs. If they do, find out how you can take them without interfering with either, such as spacing them at various intervals.
I've known people with debilitating pain who took the hardest of drugs, much harder than the current ones, and they did well. You won't know for sure until you try, but if you try, we are here to help you through.

willie g · « **Reply #2 on:** June 04, 2014, 02:54:59 pm »

thank you Lucinda,is there a special place I should be asking these questions because you stated you moved it to another area?

willie g · « **Reply #3 on:** June 04, 2014, 02:56:39 pm »

oh and one more thing im taking the old drugs not the new one thx

lporterrn · « **Reply #4 on:** June 05, 2014, 12:47:02 am »

Hi Willie - no you asked the question in exactly the right place - I just wanted to be sure it didn't get buried in the other conversation.
And to answer your question, these drugs are fairly new and we don't have lots of side effect info, but at this point, there is no reason to expect you will have an increase in pain.

Mike · « **Reply #5 on:** June 05, 2014, 09:17:10 pm »

Hi Willie,

I have chronic cervical pain and did not experience an increase in pain.

I would note that Interferon and Ribirvin have side effects; but I haven't heard that increases in chronic pain is one of them.

Everyone is a little different; but you should be fine.

Best wishes, Mike

willie g · « **Reply #6 on:** June 05, 2014, 10:13:15 pm »

thx mike for the feedback. very kind wilie

willie g · « **Reply #7 on:** June 05, 2014, 10:27:45 pm »

thx again im all over this new site and am learning ins and outs.i replied in another area where you have written some good stuff willie

Mike · « **Reply #8 on:** June 05, 2014, 10:41:00 pm »

Hi Willie,

What treatment are you going to start and how long is the treatment going to last?

Mike

willie g · « **Reply #9 on:** June 05, 2014, 11:06:35 pm »

hi I see a gentleman(I think hes a gentlemen,hope so) named brian real soon to make sure all insurance stuff is good,which I know is .im sorry,in this business nothing is for sure but anyway doc said if I waited till fall the new drug will come out for ny.see,nothing is for sure.but due to all the pain im having in liver and readings etc.he and I figured lets get on it my kidney area kills me too and funny to say it feels like all the symptoms everyones having On the treatment so im ready to put my tin pants on and rock this thing.sounds like its going Rock me! I know,ive read quite a bit don't worry itll soon be over(minimum of 3 months) plus just think if you didn't do it? yup I understand that one. thx later willie

willie g · « **Reply #10 on:** June 05, 2014, 11:23:20 pm »

those are the two mike he talked about,i have enough problems prnounceing them as well as remembering them and im not good on spelling or putters and when I hit spell check some adds pop up.pain in the arse.lol I don't see many lols and I probably wont have many when I start.but who knows,the Creators been my friend this long and hes not going to stop now.at least that's what I hear in my head lolagain you folks hang in there and you all have my respect. later goodnight and hopefully no bugbites willie g

willie g · « **Reply #11 on:** June 06, 2014, 02:36:11 pm »

I was just wondering now that Dr. says I need to go through treatment and told nurse to get this going and like I have stated before I have to talk to Brian,then I start my treatment .my question is how long generally does it take for them to get back to you and mike I should have asked more questions as you asked me questions about levels,kind of treatment I will be on and how long?i was a little overwhelmed at the time and figured he new what he was doing,which I'm sure he did.i don't even know what ghenotype,exact drugs ill be on etc. but he knows all the melds I'm on and he said its a go.i would suggest to anyone going to hep Dr. to bring pen and paper and ask any questions and ask is there anything I should know?anyway should I wait till I see Brian or will they give me all that info over phone?that might not be possible and they will probably tell me wait to see Brian.right?THxX

I think I learned how to use recheck without popups coming up.Lol

lporterrn · « **Reply #12 on:** June 06, 2014, 02:53:02 pm »

Hi Willie,
Given what you said, I wouldn't plan on starting any time soon. First, you don't know your genotype. Second, you mentioned that you doc brought up the possibility of waiting for the new drugs in the fall. If he recommended that, I hope you consider it. They are worth the wait. They have far fewer side effects, better results, and treatment may be only for 8 weeks (but they may recommend up to 12). If you do wait, then the ball won't get rolling until they are approved (Oct 10), and then it might take up to a month for the insurance to come out.

Waiting is hard. but waiting is a time for action. Use this time to focus on your health. I think of treatment like participating in a sporting event. Training starts now. The stronger and happier we are today, the better we are tomorrow.

willie g · « **Reply #13 on:** June 06, 2014, 05:04:58 pm »

I understand ,but I have all the symptoms of this hep c in my body and the pain is critical plus bad fatigue plus stomach is awful,flu like I never had and I'm on ox icontin 15mg 6 times a day. I don't want to be and before this Iowas only doing 3 I have many injuries and my DR for pain management is one of the best and insurance company tried to stop [comp]and he said no way,I've been on them for six years and that's why I'm trying 3 but this hep c is killing me. I cant function and I'm not a whiner and I've dealt with much pain .7 surgeries just to keep my foot and I wanted them to take it so I could have better quality of life,and many more surgeries other parts of body but...I have dealt with this mentally on a daily basis and it is what it is.enough of that,I'm sorry .to get back to hep Dr. stated I have to tell you about this other option.so I asked what would you do?sadly he said you need to get this done,i am almost sure he said 15millionsomething for one reading which he said was high and that's when I kinda tuned out in disbelief.i mean 15miLLION of anything is bad.right? I hate this decision but I cant lay here anymore and you like he said could be October but that's not positive. what is the latest drugs in NY that is taken with inferno ?just wondering and I should HAVE BROUGHT SOMEBODY WITH ME.WHAT AN AIRHEAD BUT THIS IS ALSO INTEFERING WITH MY MEMORY AND THOUGHTS.SO ITS A CATCH 22. I HAVE BEEN ON PSYCH MEDS FOR YEARS AND EVERYTHING WAS FLOWING GREAT FOR YEARS BUT THIS IS A NIGHTMARE.THANKYOU SO MUCH FOR LISTENING TO ME RAMBLE ON AND ON AND I DID GET AN APPROVAL OF TREATMENT IN MAIL TODAY FROM INSURANCE BUT NO SOVALDI.WHERE ARE THESE FOLKS LIVING TO BE ON IT?THX SO MUCH,YOUR A VERY KIND AND KNOWLEGIBLE LADY AND YOUR STORY WAS WAY WORSE THAN MINE. TAKE CARE AND LET ME KNOW ABOUT THAT LEVEL AND ANY NEW GOOD MEDS THAT HAVE BEEN APPROVED IN NY. HAVE A NICE EVENING.

lporterrn · « **Reply #14 on:** June 06, 2014, 05:38:13 pm »

Hi Willie,
I have been working in this field since 1997, and lived with the virus since 1988. I know hep C better than anything - enough to write 2 books on the subject and to have given more than 100 presentations on it. Before 1988, I lived with debilitating mental illness for more than 20 years. Also, I know what it is like to be scared of hep C. I tell you this so you know that I understand and will give you the facts.
1) Your viral load does not correlate with disease progression. 15 million or 50 million or 500,000 don't tell us anything. Viral load goes up and down, usually up with age. The only way to know what is going on with the liver is with a biopsy or fibroscan.
2) It is a process. I can tell you that worrying doesn't help, but let's face it, worrying is what we do. However, hep C is a slow virus, and decisions rarely need to be made quickly.
3) You can talk to your doc again. Taking someone along is a great idea. You can take notes, or ask if you can record your talk.
4) I have been through 3 treatments. The 3rd worked. Interferon and ribavirin are not the easiest drugs to take. If your doc prescribes Sovaldi and Olysio, then fantastic - most people are doing well. If it is interferon and ribavirin and Sovaldi, and if anxiety, depression, or pain are a concern for you, then you might want to wait 4 more months, assuming your doc gives you the OK.

Are you working with a pain specialist? If not, ask for a referral. You are obviously very strong, or you would not have been able to endure so much, but wouldn't it be great if someone offered you more help for your pain.

Breathe a lot, be present, find joy, and stay in touch. It does get better.

willie g · « **Reply #15 on:** June 09, 2014, 04:07:06 pm »

thank you Lucinda,your comments on my freaking out were write on.write before I got home and read this I said to myself "GO FIND OUT WHAT YOUR READINGS ARE"so I went to Dr. and requested a print out which they gladly gave me.DUGH,,I SHOULD HAVE ASKED FOR ONE BEFORE.anyway here goes for hep b s ab quaint result is 18.6,it states a minimum level should be 10MI/ml mines 18.6MI/ml now for hep c where it says Report Stage it says Final .CV RNA quaint CPR is 7.1 log IOU CV RNA real CPR is 12 million CV RNA quaint inter it says adjudicated e'er CV quaint rt CPR says WSW note so I have to download a enhanced report.. plus yes I have been under treatment for pain management since 1995 have been on Oxycontin for at least 7 years? time flays, so maybe morel. so, there we have it. ill go to that website shortly. 3 Dr.S. I saw today ,head, pain, and hep. not bad for one days work. plus I am going to go to kindle to download your book, plus I heard today new drug approved so I asked receptionist. whats up? she said the Dr. has to go to many seminars on it. did anyone else here it was improved in NY? you might want to check it out. so Lucinda my report sounds OK, right? I see Brian ,the guy that schedules it after insurance check etc. THAX again,your a cool lady and you,,Also,hang in there. WILLIE GENO TYPE 1 IM PRETTY SURE AND HES SKIPING BIOPSIE WHICH I GUESS THEY DO NOW ADAYS? ILL CHECK SITE TO MAKE SURE ITS GENO 1 BUT I SAW IT SOMWHERE,AIRHEADLOL LATER

willie g · « **Reply #16 on:** June 10, 2014, 11:45:12 am »

p found out my genotype is 1. I thought geno type 1 would be the least of all.,but I guess its not.theres 1 2 3 4 .according to what I have read 2 and 3 are the less. the most common in us is 1. oh well, in the beginning there seems like so much to take in but each day you learn more thanks to all you folks and if you don't do your homework and listen to others you wont be informed about your condition.my right side was really hurting last night and still is and when I woke up I had my day planned but I am so fluy feeling and have a headache.i will do some praying and meditate and ill take it from there. im praying for all you folks too.try and have a good day. willie g

willie g · « **Reply #17 on:** June 26, 2014, 01:49:33 am »

hi folks, I have been in the mountains for over a week to get away and think and process my new journey I will be on. so no internet and no tv. just reading[started lucindas daily helpful book.one with the sandles and nice background which I highly recommend.not only is he a good moderater she is also a great writer on this disease and her story is inspiring] so I found out last Friday the insurance company had 36 hours [which is today] to get back to dr. or me about whether I will be covered for new treatment. if not the interferon etc. will be my way I go. I hung around today to hopefully find out but ill be looking and waiting and calling for response. unfortunately I seem to have all the symptoms of pre treatment signs[headaches.pain all the way aroud liver to kidneys and back etc. some folks I find out have no pre warning signs but the fatigue thing.i stayed active also in mountains besides reading and that did help but unfortunately I overdid it so when it was time to build fire I was DONE...BUT THE FIRE WAS NICE AND I SWEAR I THINK EVERYSTAR WAS OUT THAT NIGHT.[EVEN SAW A SHOOTING STAR!] ANYWAY TIME ALONE WAS GREAT.WE ALL NEED THAT AND OF COURCE I CONSTANTLY TALKED TO THE "CREATOR" sometimes worshiping,thanking,and of course cursing n
him at times for silly things I got myself into,like falling down ,hitting head,cursing fire to stay lit and at one point looking up saying "dam ,how much of this shit do you think I can take! but in the end we said goodnight,and I said'THANKYOU, AND WE WILL BE AT IT AGAIN TOMMOROW.well of course he has a since of humor because when TOMMOROW CAME I COULDNT MOVE.LOL SO I DID NOTHING,WHICH WAS FINE.hopefully tomorrow I will know starting date which im lucky because my care givers and Doc. respond like they say they will. not like my lawyers until its cash time.lol but true.hopefully ill have a week to start so I can go back to to nature where I belong. people say I am a two legged animal the way I stay in the woods and I think on a few occasions I have been mistaken for"BIGFOOT" anyway one day one step and sometimes baby steps I find are going to get me thru this. as a man once sang "DONT WORRY,,BE HAPPY. LATER. WILLIE G HI LUCINDA ADIOS

willie g · « **Reply #18 on:** June 26, 2014, 02:12:42 am »

HEY ZEENA, I HOPE I wasn't out of line about my opinon on you wanting glass of wine,i do understand,hell I craved budlite up in the mts. or a good shot of good old moonshine,drinking I now call :THE ALL PURPOSE REMOVER" IT REMOVES FAMILY, HOUSES, MATERIAL SHIT,JOBS, ETC. That has been my experience anyway and yes even thru all that I still crave but I think this is a real wakeup call to me,this hepc geno 1 stuff so pray for me I don't pick up again. a lot of people can have a glass of wine and walk away and maybe your one of them,anyway thx for all your goodposts and have a good weekend. willie g

lporterrn · « **Reply #19 on:** June 26, 2014, 07:57:59 pm »

Hi Willie,
Sorry I jumped in late here. My daughter got married, and I just came back from a family vacation. It sounds like you are right on track (especially the praying, meditating, and nature/stargazing part. Nothing in your labs registers any alarm for me. Waiting and dealing with the medical establishment is an exercise in patience, but sounds like you are doing well despite it. Waiting is best done in the company of others, so glad you are here.
Waiting with you,
Lucinda

willie g · « **Reply #20 on:** July 06, 2014, 02:12:47 am »

hi, WELL GLAD TO HEAR YOU HAD A VACATION AND YOUR DAUGHTERS WEDDING MUST HAVE BEEN NICE. I ONLY HAVE ONE CHILD WHO IS STILL NOT MARRIED,IT WAS TOUGH ENOUGH WHEN SHE MOVED OUT, SUCH A GOOD CHILD. WELL LIKE YOU SAID IN THE BEGINNING THERE SEEMS TO BE NO RUSH ON THE PHARMACUTICAL COMPANY THAT I HAVE TO HAVE APPROVED .THE ONE THAT MAILS THEM. I BELIEVE THAT IS ALL I NEED AND OFF I GO.IM GLAD ABOUT YOUR NOT SEEING ANY BIG FLAGS ABOUT MY LAB READINGS. IT JUST BLOWS MY MIND THAT THE HEADACHES, THE TIREDNESS. CRAMPING AND UNABLE TO LIE ON BOTH SIDES , PLUS I CAN REALLY FEEL THE BULGE IN MY LIVER WHICH I INITIALY WENT TO DR. FOR.IT STARTED OUT FEELING LIKE I WAS ALWAYS LAYING ON SOMETHING ,LIKE MY TSHIRT WAS BUNCHED UP OR SHEETS WERE CRUMPLED, THAT WENT ON FOR 6 OR SEVEN MONTHS AND THEN I STARTED HAVING THE SHARP PAIN WITH IT. THATS WHEN I WENT TO SEE DR. AND FOUND OUT I HAD HEP.GENO 1 ETC. WELL DO TO NO CALL BACK I HEADED FOR THE WOODS AGAIN. I GUESS IM LUCKY I GOT TO TO SOME MORE STUFF WHILE SUMMERS HERE BUT I AM PRETTY SURE AFTER THE HOLIDAY I WILL GET A CALL.JUST ANXIOUS TO START AND STOP HAVING THESE SYMPTOMS I HAVE.I REALLY GET DRAGGED OUT EASILY BUT HEY IM LOSING WEIGHT WHICH IS COOL AND IM PREPARED FOR DISCOMFORT WITH MED BECAUSE I ALREADY DO. NO FUN EITHER WAY. I FINSHED YOUR BOOK WHICH IS THE DAY BY DAY READINGS AND GREAT KNOWLEDGE AND ISPIRATIONAL QUOUTES FROM ALL. I LIKED HELEN KELLERS ONE AND WHEN I READ YOU HAD TO GO THRU THIS THING 3 TIMES I THOUGHT WOW THATS INTENCE . AND TO BE WHERE YOUR AT TODAY WITH YOUR LIFE AND THE CARING AND SHARING YOU SO HUMBLY DO.WELL SEEMS LIKE I HAVE WROTE A SHORT STORY. IVE BEEN GONE FOR ANOTHER WEEK WITHOUT PEOPLE.WEBS , TV ETC. SO WITH THAT THANKS AGAIN AND CONGRATULATIONS ON YOUR DAUGHTERS NEW JOURNEY. WILLIE G

lporterrn · « **Reply #21 on:** July 06, 2014, 04:21:48 pm »

Thanks WIllie - looking forward to being on this journey with you. And thank for the thoughtful feedback on my book.

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Author Topic: Questions about new treatment (Read 25798 times)