Having second thoughts

[researchmonkey326]

I'm sure that I am not alone in having second thoughts about starting tx.  Since 2007 when I was dx, I was totally against the SOC and did not want to put that stuff in me.  I was asymptomatic, had enzyme levels in the 40's and vl that usually hovered around 2mil or below.  I was not sick- at all- and believed that I would die with this, not of it.  Then I went for my yearly checkup in February and somehow by March I'm in a clinical trial.  Every night I come home and wonder how I got myself into this.  I can't think straight, I'm manic most of the time, feel like I could snap at any given moment, and I  think that I'm a completely different person than I was a month ago.  I feel weird and uncomfortable and my life revolves around taking meds instead of the things that I used to enjoy and I know there is a chance it will get worse.  I have had very good response to the drugs with vl down to 43 by 2nd week.  Monday is the big Week 4 bloodwork which will really tell if I am responding.  Does anyone know what might happen physically if I am UND after four weeks and decide to withdraw?  Is it like antibiotics when if you don't take the full course, the infection can come back worse?  Could taking four weeks of these drugs and stopping do more harm than continuing with them? That hardly seems possible since it feels so toxic at this point. Does anyone know of any data about this?  Thanks for any input/feedback.
Debra

[babs824]

great! with that amt of sobriety it is surely less of a concern. hopefully u can take it once a week or less so u dont become dependent. congrats on your sobriety. best of luck, babs 824

[researchmonkey326]

No, I don't think you are rabid AA - I have lots of friends in varying degrees of rabidity and lots of relapsed friends too so I know what it takes.  I really thought that after a week or so I would be feeling better and each day that passes after my shot I do improve (took just one today) and then it is shot time and it starts over.  This week was the worse so I have been concerned too.  When I was using, I don't think these things even existed so I don't have any experience with them.  They don't give me any buzz at all, just seem to calm that thing going on inside of me which I find so hard to explain.  I'll talk to the doctor about alternatives.  It's been over 25 yrs since I was a doper and 20 since I drank so believe me I don't want to risk all of that.  I'll do some research before I see the doc on Monday - really having hope about my week 4 labs results.

[Interfurgen]

it's just to close to my flavor drugs Barbs they gave me zanax at first the first 60 pills i did fine then i took 30 in 4 days have not touch any again please be very careful please!!

[babs824]

i was very concerned too that your put u on a benzodiazepine too. these can cause big probs coming off of them. for an addict even worse. as a sober addict for more than 2 decades i would no more take such meds daily than i would take 3 oz whiskey. for a brief time closely monitored maybe. i think i was given some for a week when i got breast cancer. after that herb tea. i do take effexor which has been a godsend for 7 years. i doubled the dose during tx (this worked great) and spoke to doc today about stepping down by50%. i wonder if your antidepressant could be increased. there is little chance of abusing or having the type of withdraw symptoms u would have with zanax. please dont think of me as rabid AA. i have seen too many folks relapse by using such meds. all the best, babs

[researchmonkey326]

Thanks for your concern.  I do understand that Xanax is addictive and with my history, a precarious option.  My doctor and I discussed my using it short term (which is what it is made for anyway) and my usage is being monitored by her.  Now that I have been taking it for about ten days and I see that it is probably not the most effective solution, have put it on the agenda for my Monday visit.  Truthfully though, if I do not have something to calm this down, I don't know how I will be able to continue tx.  You know how they say everyone reacts differently to the drugs - well, this apparently is my thorn right now.  I hope it eases up on its own but in the meantime I have to function at work without snapping out every two minutes.  If someone has other options that I can discuss with my doctor, I'm all ears. Good reality check, though, Hector.

[HectorSF]

Not to be a downer...just a question...
Why has your doctor prescribed Xanax? Xanax is an addictive drug and should not be prescribed to persons with a history of alcohol or drug abuse.
" Xanax is what I am using now but seem to need more all the time just to feel close to "normal". "

From drugs.com
http://www.drugs.com/xanax.html

"Important information about Xanax

Do not use this medication if you are allergic to Xanax or to other benzodiazepines, such as chlordiazepoxide (Librium), clorazepate (Tranxene), diazepam (Valium), lorazepam (Ativan), or oxazepam (Serax). This medication can cause birth defects in an unborn baby. Do not use Xanax if you are pregnant.

Before taking Xanax, tell your doctor if you have any breathing problems, glaucoma, kidney or liver disease, or a history of depression, suicidal thoughts, or addiction to drugs or alcohol.

Do not drink alcohol while taking Xanax. This medication can increase the effects of alcohol.

Xanax may be habit-forming and should be used only by the person it was prescribed for. Xanax should never be shared with another person, especially someone who has a history of drug abuse or addiction. Keep the medication in a secure place where others cannot get to it.
........"

Best of luck with your treatment!
Hectorsf

[Trish77]

Congrats.  That's the spirit.  You also get to do something nice for yourself.  Part of getting through treatment is being somewhat selfish.  You are primarily responsible for yourself and it only makes it harder to depend (operative word being depend) on others who may not be able to come through for you despite best intentions.  So while it's good not to neglect others if you can help it, you do have to be focused on paying alot of attention to yourself so that you can deal with each day as it comes, towards getting yourself to the finish line.  Do what you need to, to make this work.  You're on a mission. :)  

As for anxiety, irritiation, whatnot..I'm not much help there. I didn't take any meds, I'm very nervous about anything that could be mind or mood altering, so I used strategies. Just kept  doing whatever I could manage that added value to my life to keep my mental outlook healthy, resting when I could and limiting contact with people when I was too irritable to trust myself to treat them properly.  I'm sure I did more damage than I'm aware of, I didn't think I was all that irritable while on treatment but my daughter corrected that notion pdq.

Post your 4 week results when you get them, please.  Based on your 2 week results, there should be cause for celebration. :)

[paen53]

That's the attitude!! You're going to do just fine.

It's good to be mindful that these feelings can occur on tx. I can relate to the "mania". A couple months in and I got the notion that this was the perfect time to change jobs and move to another city. Really - it sounded perfectly reasonable to me at the time. I got close enough to slapping down a hefty down payment on an adorable bungalow that I just had to have. Cringing at the thought of it.......

Rule of thumb, give yourself at least a week before you act on any impulses -  or a day at least. - my thoughts anyway. Talk to someone about them, be it here on the board or a trusted family member or friend. As far as meds, after some trial and error, I found that Celexa worked well for me, with an occasional Ativan later in tx. Ativan really worked well for me in the worst of times, but I was aware that it could have some dependency issues, so used it sparingly.

Hang in there and remember each day is one more closer to your goal.  Pam

[EyesofBlue55]

You will be fine-Ya One Day at a TIme !!!!! have a good day !!!!! ;=) !!!! cindy

[researchmonkey326]

Woke up with a completely different attitude today - at least for now.  I have been given an incredible gift and need to look at it for what it is.  Many years ago, when I faced the thought of life without drugs and alcohol, it was overwhelming and seemed like an impossible challenge - I needed to focus on the moment rather than next week, month, or year and just get through each day on its own.  Truth be told at this point, I feel better now than I ever did when I woke up an active addict. So today I will take my meds, work on learning how to focus past this fog, and do something nice for someone else.  Thank you all for your encouragement and clear headed points of view.  I would still like to hear what others have used successfully for the anxiety/agitation/irritability.  Xanax is what I am using now but seem to need more all the time just to feel close to "normal".  

[orphanedhawk]

Some people have quit and cleared, others have not.
The thing is, when you feel really down, remind yourself that it won't last. That's how I got through tx.

[undersiege]

I put off tx for 7years because my GI Doc said HCV would not kill me but all I did was think about it.So I said to Heck with it Attack,Attack,Attack!!!. I'm week 10 into 24 and glad I did it.

[Interfurgen]

sorry I just depress my self at least your car was at home people in my little church are now just talking to me i did something close I lost my car at walmart because i thought i had park it at safeway down the street look for a few hours then got mad at my wife for wonder what took me so long getting home

[Interfurgen]

no I did not. the antidepression meds made it worst the only thing that help was a pych doc and findly zoloft!  there was days I layed on the couch with the front door open from morining until late at night eyes watering and saying Ishould get and eat somethething my pups dogs would come and go then as night can on they would lay on the floor by me It was as if they knew. I think I did not shut the door because if I died they could get out. But I'm still glad I did tx and would do it all over

[willbb]

Well, I know for sure that I will still be taking this stuff tomorrow so one day at a time is right.

  Say that everyday and you will be good to go :)     good luck....Will

[researchmonkey326]

Thanks for all the quick responses.  First of all, don't get me wrong - I am very grateful to be in this study.  I'm at Emory and more exemplary care you cannot get so you are right, Trish.  I am a little discouraged not unrealistic about my life on these drugs - believe me I have plenty of experience with life on drugs .  I guess i just didn't expect the sx to be so  mental/unnerving/irritating but more physical.  What would be worse would for it to be both.  Right now, the physical issues are minimal

Willbb - thanks for the encouragement.  Yes, I am being monitored closely and the clinic has been responsive to my every need/request.  I am taking Xanax but we are working at getting the dosage right or maybe we will be trying something else if this mania/irritabilty does not ease up.

interfugen -did you find any relief for the mania/craziness?  I think that if i could get this agitation to calm down, I would be able to handle everything else better.


babs824 - I have been on WelbutrinXL for about five years and it has been pretty effective for my depression - this is something different though- almost symptomatic of bi-polar disorder.  I really hate it.  It is good to hope that maybe this will change - even if it is replaced with something else.

Well, I know for sure that I will still be taking this stuff tomorrow so one day at a time is right.

On the lighter side - my brain fog - I left my car outside running two nights in a row for who knows how long because I forgot to put it in the garage.  

[paen53]

Like the others have stated, you're having a GREAT response - and if I remember correctly, minimal sides? Your life does revolve around the meds right now, that's true, but you have a terrific chance of beating this thing once and for all, otherwise it'll be hanging over your head for a long time to come.

Sounds like the riba may be starting to do a number on you, with the anxiety and all, but this too shall pass. If it means taking a day at a time, do that. Sometimes it may be an hour at a time, but if you keep the goal in focus and decide in your heart, you're going to do it, you will get to the other side. If you find that the anxiety is overwhelming, talk to your Dr. about something to take the edge off. It's not being weak, quite the contrary, it's being proactive to stay in the game.

And know that many of us have been in your shoes - and lived to tell about it. :-) You are not alone.........Hang tight and stay focused, Pam

[babs824]

the side effects for most have an emotional, mental component. this can cause ones perspective to be more negative than usual. i wonder if a low dose antidepressant would help. i am not sure if u can start a new med during trial...i sure think u should hang in as long as humanly possible and hopefully to end of trial. sx vary alot and may be entirely different in a few weeks. i am soo grateful to have finished. i believe nearly everyone has second thoughts during and after tx. dont let fear derail you. keep posting and take one day at a time, best, babs824

[Interfurgen]

I also had all the side ecf manic my wife rename me that I went 12 weeks no respones but stopping no! I am still having some sides ecf and wonder what I did to me self I AM TOTATLY HAPPY THAT I FINISHING TX I 'm even proud of it

[Boobert]

The bonus for you is that you've had a remarkable response so far.  To stop at 4 weeks if you're UND is to throw away the golden ticket everyone looks for in treatment, that 4 week UND - RVR - let alone throwing away an very high potential of cure.  Stopping treatment at 4 weeks is like handing it back and yes, you'd almost certainly undo everything you've achieved by stopping at 4 weeks.  You're also fortunate to be in a trial where the care is usually exemplary, testing is far more frequent and the medication is free. It's not always so easy to get into a trial let alone a good trial.  So perhaps you need to make some mental adjustments and realize your life HAS and WILL change for the duration and it goes with the territory.  It's actually a very short time in a life compared to the ROI you'll get out of it.   Good luck with coming to terms with it, which is what you seem to need to do.

Trish said it all. You would be throwing away the golden ticket, Please hang in there it is such a short time in life to get through. Take 1 day at a time and you will get through this but please don't give in where your at now. You will do this!!

[Trish77]

" I can't think straight, I'm manic most of the time, feel like I could snap at any given moment, and I  think that I'm a completely different person than I was a month ago.  I feel weird and uncomfortable and my life revolves around taking meds instead of the things that I used to enjoy and I know there is a chance it will get worse. "

Well, your life actually does revolve around taking meds for the time you're on treatment.  You need to take them regularly and your mission in life for the time being is to do whatever it takes to get through treatment successfully and to make the most of this time.  You did start this aiming for a cure, yes?  That requires a certain amount of dedication to the treatment process.  You need to be thinking your way through treatment for the duration.  Every day can throw something new at you.  To expect your life to stay the same while on drugs of a very serious nature is, frankly, unrealistic.   It doesn't sound to me like you're mentally in the game yet.  You can change that, however.

The bonus for you is that you've had a remarkable response so far.  To stop at 4 weeks if you're UND is to throw away the golden ticket everyone looks for in treatment, that 4 week UND - RVR - let alone throwing away an very high potential of cure.  Stopping treatment at 4 weeks is like handing it back and yes, you'd almost certainly undo everything you've achieved by stopping at 4 weeks.  You're also fortunate to be in a trial where the care is usually exemplary, testing is far more frequent and the medication is free. It's not always so easy to get into a trial let alone a good trial.  So perhaps you need to make some mental adjustments and realize your life HAS and WILL change for the duration and it goes with the territory.  It's actually a very short time in a life compared to the ROI you'll get out of it.   Good luck with coming to terms with it, which is what you seem to need to do.

[willbb]

Debra...sorry to hear about the rough time you seem to be having in your trial,however it sounds like you are having a great  response. Are they not monitoring you in the trial and giving you anything to relieve some of what you are feeling.
With such a good response and a very good chance to beat this....i it would be a shame if you were to stop now,and yes the virus will certainly return after just this short amount of time
If you are having  this good of a response I believe also in the trial you are in you may be able to stop at 16 weeks .is that correct?   Keep talking to us here and lets see if this can work out for you.

[Fnzol]

it feels so toxic

It is toxic.  That's how it works.  You have to decide how bad you want it, and whether you can stick it out.  Good luck to you, from one who had about all of the side effects known to man or animal.