Stopping tx.

[katerika]

The votes are in , I am a partial responder and at week 24 still not UND. Just got am e-mail from my Dr. "You can stop tx. However she didn't say if I should wean odf, or go cold turkey. Any input.
Thanks Teri

[merryBe]

so sorry you are having to quit.
I heard the riba doesn't matter....I may be in your boat soon, but because my immune system is very fragile, and spleen is enlerged I'm going to wean off the INF by taking a half a shot for a couple weeks.
Some have suggested this might help the immune system to adjust down, and go through less adjustment stress. Your body basically will have to readjust to making it's own, and much smaller amounts on interferon....so to me a little time for that to happen....it might be wisdom.
If you are young and/or reasonably healthy otherwise, it might not matter...but in my case my spleen might not like the switchback. It's an individual choice.

[merryBe]

www.nlm.nih.gov/services/faqctgov.html

clinicaltrials.gov/

also call your local on the nearest university research hospitals to where you live...
ask for the clinical trials person in the Hep C or Liver/gasterenteroly department, talk to them, get your name on the list.

read the protocols for each trial. For instance, you may only qualify for certain studies if you don't have certain conditions.
I have one condition that is on my record, fibromyalgia, that is no longer accurate and was guess work to begin with on the part of my GP when she refused to acknowledge my pituitary dysfunction.....so if you have any "conditions" in your medical files that are inaccurate or no longer the case, you have to explain.  Getting them to take a wrong diagnosis off your record, is like getting the Pope to go back on his word, no offense meant to catholics...I have tried and tried.

[williamdoe123]

Have not been diagnosed but suspect possible symptoms but want to obtain best insurance for treatment before confirming.  Any suggestions for a good insurance company?

How do you get into or sign up to try to get into one of the clinical trials for new medications?

[katerika]

Thanks, I had my dr consult with Dr. A in Boston and then asked Dr. Chung to review my medical history as well. They both felt stopping was appropriate at this time. Hoping to work on the iNSULIN rESISTANCE. had my last dose of procrit today. Still feel "pukey , achey and tired. Oh dear what if all this yuckyness isn't the meds and it's age! LOL.  Thanks for all your kind thoughts. I am planning on lurking and rooting for SVR for all.
Happy Thanksgiving. I count you all as my Special Blessings.
Ter

[dancegirl54]

So sorry about your tx - there is a lot of hopeful tx coming soon

[wyntre9]

So sorry to hear your news but I admire the way you're handling it, Katerika.

Like Zazza said, at least your are a partial instead of a NON responder and I would think that would give you more opportunities for future TX.

Take care of yourself!

wyntre

[Marl37]

I stopped tx after 11 mts, the last 6 mts which were infergen.  I stopped cold turkey except for the procrit - I had 2 shots left and dr told me to finish those.  Also still on the zanax until I see new dr on 12/7 (seeing hep dr).  I heard it was not easy to stop those cold turkey.

[jmjm530]

I was told to stop all three drugs at once -- Peg, Riba and Procrit. Since the drugs don't leave your system immediately, in that sense there is a built-in weaning process.

I did however choose to take the riba for an additional six days after the last Peg shot per one protocol which I do not think would apply for someone stopping due to lack of viral response.

Of course check with your doctor, because they might have you continue with the Procrit for a week or so if anemia is a problem, although Procrit seems to improve hemoglobin at about the same rate that ribavirin decreases it, so in theory stopping both at the same time should be OK.  YMMV.

All the best,

-- Jim

[frijole]

I too am sorry to hear that treatment has failed.  It does sound that you have a plan in place to resume later. That is good.  As the ribavirin takes a long time to leave your system, you may want to continue taking the procrit for at least the next two weeks to boost the hemoglobin some.  I continued until I was out of Procrit after completing tx - probably 2-3 more injections.  If you are getting weekly CBCs you can gauge it from them.  What is your HGB now?
frijole

[cat33]

I was never aware that you could give your meds. to the Dr. for uninsured patients. To think of all those drugs and money I'v flushed down the comode.
I'll remember that next time I'm left with something I cant handle.  cat33

[merryBe]

sorry to hear this sweetie, but do you live where any trials are being done? because if you could get into a non responder teleprevir trial it might be worth running to it...and staying on what's left of your meds until you get started...which would depend on where you are and how soon the start ups are...
but IF you could get into one, it'd be worth staing on meds for the month it would take to get in.

otherwise you'd lose the ground you have gained.  Of course, some might argue it would be better to have started with the teleprevir but it ain't a perfect world,, and you are trying to regroup while not causing resistance to form.
plus in the trial, you'd at least be getting the SOC, which would help maintain a low viral load.
don't know your particulars so...

your doc has no bedside manners. Jmjm might want to weigh in on the wisdom of cold turkey vs weaning oneself off for less system shock///////????????????????????????????

[jools57]

So sorry to hear the news. take care of yourself, and keep us posted on how you are doing!
Blessings

[FloridaMouse]

Sorry to hear this.  Have they suggested what the next step might be?

Mouse

[zazza]

Sorry to hear the bad news. At least you are a partial responder, maybe adding Telepravir to the mix can do the trick. Have you considered looking for a trial? I seem to remember that your biopsy results suggest you shouldn't wait too long before tx'ing again. Best wishes, Zazza

[GrandmaA]

Sorry to hear about your being a partial responder. Worry doesn't change a thing except deplete your energy - easier said than done. I quit smoking after 8 years. I was down to 4 a day when I quit years ago. There is no way you can take care of everyone else when you are treating. YES, FOCUS ON YOU. God bless.

Hugs,
GrandmaA

[spcecst2]

Hey I'm with ya on the smoking it's a tuff one to crack, be positive-regroup and battle again!!

[katerika]

Thanks for the comments. When you don't reach UND at 16 weeks , you start getting ready for this news. I am also Insulin resistant. So we will work on that and then there will be a better chance for SVR the next time around. I am hopeful and damn happy to stop tx. at this point.
I told the Dr. I now know what to expect and I know I need to train for a marathon. I also need to quite smoking, Maintain a healthy diet and exercise routine. Quit worrying &  taking care of everyone else, they survived when I stayed in bed for a day, Time to focus on me.
Hugs
Teri

[Lonestar823]

Same thing happened to me.  I stopped everything cold turkey.  I remember carrying a three month supply of Peg to my doctor's office in Portsmouth so he could give it to others with no insurance.  It had just been delivered the day before my six months test.  I was heart broken.  Six months later I treated again with Infergen.  It worked and I'm svr.  Don't lose hope.

[spcecst2]

Just stop you'll be fine, sorry to hear about being partial responder! I don't know about procrit stopping never done that! Make emergency call to doctor and get him off the golf course!

[desrt]

You need to get the advice of whoever is Rxing the Procrit about when/how to stop. As far as the Peg and riba, you can just stop. Sorry to hear this.

[katerika]

What about the Procrit, do I just stop that also?