bad news for me

[susy50]

Thank you everyone on here for your support but i had an awful weekend , despite my UND result on thursday i was taken off treatment because all my levels dropped so badly on friday i am still in hospital so i think that helped if i wasnt i could of died. My blood pressure was 78/50 which was really low and my heart was just too weak to withstand this tx anymore.My skin went jaundice on saturday very very yellow and i have fluid in the lungs also with an infection in my left lung:( .Has anyone on here had to stop tx before?and if so what is the next step ?what can i do?As of last night i am feeling better and my pottassium and sodium levels are slowly raising now that i have been off treatment for 4 days.

[susy50]

aww thanks chris ya i enjoy reading hectors posts that for sure he is ver knowlegeable ,Im also hoping i can start teatment again too ,i guess you are right i rather be blind then keep dealing with this dam disease .Right now i can just hope for a better quality of life and to get out of the hospital .thanks for the uplifting words bye

[ChrisDDD]

I am so sorry to hear about your having to stop treatment.  I had to stop at week 9 of Infergen and Ribavirin back in 2005 because I had developed retinal hemorrhaging.  Desperate to get back on treatment, I told a nurse I was willing to lose my eyesight to get rid of this STUPID *_#?) virus!!  She seemed shocked!  I took them pages and pages of professional web sites as well as patient web sites of people developing even severe eye problems during treatment but were allowed to continue to treat, and they cleared!  And their eyesight returned to normal!  My doctors said they had patients who had gone blind during treatment and their eyesight did not come back.  My file at the hospital where I was screening is 4 inches thick from where I categorized viral loads, liver biopsy, on and on and on.

Well, here I am 7 years later still waiting to get treatment, because a few months later during screening me for the VX-950 trial I was so hoping to get into, an irregular heartbeat was discovered and I had had a mild stroke.  Now I won't ever be allowed to get into any trials, even oral-only, until they are FDA-approved.  Meanwhile I've developed this umbilical hernia.  I'm 57, so if I treat in 5 years, I'll be 62.  I'll bet something else happens between now and then.  Who knows?  I'm so grateful to Hector on this web site who shares his experience and he encouraged me, and now I feel somewhat lucky about my quality of life.

I really, really hope you're going to be okay.  Do let us know.  We're the best here.  I'll think good thoughts for you.

[susy50]

I was UND after 4 weeks and had to stop at week 5 so ya pretty devastating they said i cannot continue bacause my heart was so weak .I got a bllod transfusion today cause my hemoglobin was 6.7 im so exhausted so if i dont write back quickly forgive me but thanks for all the info i will see what else my doc thinks i can do right now they are looking at a transplant instaed

[working dog]

i wasn't thinking of her going back on triple...but continuing soc if her health gets good enough in time...there have been some folks that have had to stop riba for two weeks...although its just a thought...i don't know how long she's been und or if her doctor will let her go back on tx...i was so freaked out when i had to stop riba for 10 days...my doctor really wanted to get me back on as soon asap....his team and i were very nervous about this as the first week without riba past and my symptoms were too bad to get back on tx..finally on the 11th day i was able to continue..i think some of the people tx are just very sensitive to drugs and need to adjust things during tx to continue..i would hate to see someone throw away what they have started..especially if they have gotten to und with triple...billy

[Advocate1955]

I am not a doctor, but I don't think you can go back on triple therapy again since you've been off treatment for four days.  Once you've stopped Incivek, you can't start it again, and once you've taken Incivek, you can't take Victrellis (the other triple therapy med).  It sounds like you are not well enough to be treating right now anyway.  Your health is the number one priority, so take care of yourself, get well, and get out of the hospital, and follow up with your hepatologist as soon as you can.  I would also suggest that you call his office tomorrow and make sure that they know that you were hospitalized so that they can get your hospital records to help figure out what happened.  When they are able to determine why you became so ill, your hepatologist will be better able to determine a course of treating your Hep C in the future, when you are well.
Keep us posted.  You are in our thoughts.
Advocate1955

[working dog]

are you sure you can't start up tx again? maybe a riba break? i did twice to stay on tx...are you on just the riba and interferon? and what week are you in? this is too bad....but maybe you can start up again in a week...i stopped tx at 19 weeks because of eye problems...i think i'm und after almost 4 months post tx...new blood work soon...some people are very sensitive to tx ..others not too bad of ..good luck....billy

[crossroadsec]

So sry to hear ur news. I hope they cam get u on a regime of diet n Rx that will let ur body recoup. You'll be ready next time. Xo Karen :)

[frijole]

susy50
i am sorry for your bad news.  It just sounds like your system cannot handle these tx drugs.  I hope there are some solutions coming soon

[micheall]

Soor for what happened to you.I to went to the hospital with71/40 bp,rash and anaphylaxia.Got 3 units of blood and recovered and sent home after 3 days.Had to stop triple tx.Followup showed UND.I was on tx for 11 weeks.I had after effects after tx because I didn't continue with drinking lots of water and juices.My dr tells me other drugs are in the near future(18 mos).Time to take care of yourself and being with family and friends.After effects were temporary for me.Take care.MIKE

[ninjamonkey]

Wishing you the best

[candyce1953]

Well Suzie trust in your hepatologist and speak with cardioligist about your heart to see what did it
You're in my prayers
Live candy

[Ironpony]

I'm glad you are feeling a little more energy now that the medicine is getting out of your system. One day at a time....I'm glad you have a supportive family by your side. Late nights sitting there thinking definitely take advantage of this site! You have friend's here and we are rooting for you:)

[susy50]

oh thanks laura for the support ya i am lucky to have a great family but i still get lonely later in the day when everyone leaves and i just start thinking ,well when i can stay up i was at points when i was sleeping 18 hrs a day but that was on tx it seems to be going away already .I have an excellent dr he is always looking for the next thing to do he is great .

[susy50]

well I had all the issues that you said you had with potassium and electrolytes Im not to sure if it was just a reaction to the treatment but what i was told as the main reason was that my heart was too weak i have never really had any big issues with my heart but the last year they found a hole in it im not sure if that has anything to do with it but i think the liver cirrhosis and hep c is starting to affect my other organs too

[Ironpony]

Oh Susy:( I am so glad you were in the hospital when this happened! Thank god you were so closely monitered.
Yes definitely right now just focus on getting better from this as mentioned above. You still have so many poisons in your body that you do not want affecting your state of mind...thinking too much about the next step right now is just not a good time. Have your doctor make all of the decisions right now until your levels are normal and you are healthy mind spirit and body. I know this is hard especially after getting that UND result:( but it sounds like the tx is more dangerous to you right now than the hep c. Your doctor sounds very good I think he will keep you safe. I hope you have family and/or friends supporting you through this. I am here anytime if you need to vent or just need some support. My phone notifies me as soon as I get a message and I'm up till 1 am taking Incivek every evening so if it's late and you need someone to talk to I'm here.
Get some rest, I'm sending positive energy and prayers your way!
Laura

[candyce1953]

Sorry you are going thru this and in the hospital

I have never tx, have hep c 41 yrs, grade stage 2/2

I am afraid to tx because I was hospitalized with fluid around my
Ungs last year with low blood pressure like yours and electro let's severely off, they said pneumonia, but it wasnt
I think mine was autoimmune or endocrine related and getting tested now

I was severely dehydrated needed tons of I've fluids and because of that the blood pressure was very low and potassium etc were also off

I just wondered what did the tell you cause all of your symptoms

Was it a reaction to the medication
Or dehydration

Or do you have autoimmune or other issues?

[pooh55811]

I am so sorry to hear of all of the problems you are having and I am sorry you ad to stop treatment. It sounds like you were very, very ill.

Hopefully others with more experience and knowledge will respond. My only suggestion is to discuss your next steps with your hepatologist (or treating doctor).

I wish you the very best and hope things will work out for you.

[crigger]

Sorry things have not gone well.  Hang in there!  

[susy50]

Thank you im just trying to wrap my head around this slowly but ya im already getting a bit of energy back and they have got the fluid out of my lungs so i can breath again too .oh god bad weekend

[1oftheclub222]

So sorry to hear this Susy...take some time to recover and feel better before you make any decisions...first things first, get your self better...sending out positive thoughts