Mental Health

[louisianawomen]

Does anyone have any suggestions for keeping the mind busy while on the Interferon? This is my 4th round and I seem to be having a little worse touble keeping concentration and insanity in tact this time.

[susan400]

Actually, I've treated so many times because I wanted this Hep C thing out of me!  I'm tired of it making me feel bad 90% of the time.  And I had doctors, at that time that we willing to try whatever, to try and get me in remission.  I started out about 11 years ago with Stage 1 and now I'm up to Stage 3.  I've had this for 22 years.  I'm genotype 1A/1B.  As I said, never cleared.  Also, unfortunately, each biopsy showed no improvement from my treatments. I know some people do get improvement in their livers even when they don't clear, I did not.  I just keeping on being chronic/active and doing it's thing.  So, now, I'm doing nothing.  Praying that God will heal me.  There's nothing else I'm allowed to do.  If God chooses for me to have a Paul-experience than he'll give me the grace to be sufficient.

Susan

[SJL]

I know exactly what you are saying & going through. Everyone keeps telling me it's my age & it happens to us all as we mature. I find this hard to believe presently, as I used to have a very good thought process & follow through. Now, they are both gone. I can watch a Nextel car race, from beginning to end, and tomorrow I won't be able to tell you who won. It seems to be more short-term memory than long term? May I ask why you have treated so many times, except for the obvious? What are your stats, if you don't mind.
Sandy

[susan400]

You asked about side effects.  My brain is not functioning right anymore.  Simple tasks, following simple directions that other people can do with ease, I cannot do.  I sometimes feel like a complete nicen-poop.  I have headaches, which I didn't used to have.  I still don't sleep well at all even with a sleep medication.  Today I set off the alarm at my husband's house (he doesn't live with me) which got me totally upset and caused me to start going on a crying jag about my inability to do these simple tasks.  He was on the phone with me telling me exactly how to disable the alarm in a step by step process and I still managed to set it off.  He had to come racing back home to get there before the police showed up.  The alarm company had already called them before he could get ahold of them. Fortunately, on the 2nd attempt he did catch them in time before they showed up. I tried to put in a simple fluorescent tube in my kitchen light fixture and it broke off in my hand sending pieces of the tube flying all over my kitchen along with my blood spatters, I still don't have a new tube in there, there's just one tube in it at the present. I tried to install the new keyboard on my computer which my husband bought me and couldn't do it, so here it sits. It's just a constant thing, over and over, I'd take up too much space, you get the picture.  Anyhow, it would be all worth it if I could make some sense out of this all, if I had at least cleared once or twice. But, according to the positive side, I guess I could be saying that if I hadn't treated all those times, I could be in cirrhosis by now. That and I am sure the God has kept me from there. Susan

[louisianawomen]

over 20million right now. But that is a low rate right now. Stage 3. I keep having some improvement with tx. Gotta go to Church. We'll start a new thread today.
God Bless All

[Myown]

Amazing! You guys have strength that only God can give. Louisana, you mentioned that you feel bad for feeling bad because of all He's done.  Your testimony of perserverence, courage and continued faith is a testimony of His presence in the midst of the storm.You guys are a testimony for Him with your unwavering faith. These are Job accounts and I know you know the blessings he received after loosing everything. If ever i feel like quitting, once I start, I know I will gather strength just by remembering of how you both pressed through all those times.

My prayers to you and Susan both.

[copyman]

i have not started tx yet but hope to soon. you are a true insperation to me and other newbies, if you can do it 4 times then we should not fear starting our first time. you will be in my prayers. god bless

[susan400]

Hi there. I just finished my 7th round of full treatment about 9-10 weeks ago.  I also did 6 mon. of maintenance therapy in addition to the 7 full rounds. I did the Actimmune, the Pegasys, the Peg-Intron, the regular old original Intron-A and the Infergen.  And different combinations and/or strengths of all the above.  The last round of treatment was my hardest.  On that round I was on double dose of Ribavirin (8 pills a day) and daily Infergen.  I'm having a harder time post treatment this time.  My doctor pulled me off of treatment in my 44th week.  I've never responded i.e. cleared, on any of my treatments.  I did have a partial response to all of them, but no clearance.  Each time, my LFT's dropped and my viral load came down.  But, even with doing 18 mon. one time on double dosing with Peg-Intron + daily regular Intron-A, I still did not clear.  When I was pulled off on the last time, my doctor told me no more treatments with just interferons and Riba. He said with somebody like me that I'd probably need 3 or possibly 4 different meds in order to clear. In other words, Interferon, Riba, a protease inhibitor and some other med, some other type of inhibitor I think he said.  I have a double genotype of 1A plus 1B.  NYgirl who comes on here, also has that genotype.  I think that there is a 3rd person who has that genotype, too.  I'm borderline cirrhosis, have not yet crossed the threshold, so that's a positive.  I'm not giving up. There's always hope with all the new things coming out. And I'm also trusting God for his healing.  But, for me, treatment is having to take a back burner for a good bit of time. I don't think I can even think about treatment again right now because I'm so much trying to get over the last one.  I totally understand how you feel with feeling discouraged and wanting to quit your treatment.  But, if you can hang in there, you may be helping your liver from progressing in severity.  Just try to take one day at a time. That's all any of us can do. Take care.
Susan

[SJL]

Louisiana & Susan-I am wondering what your biopsy read? (stats). I am 63, female, and have done 100 total weeks. (48-Peg-Intron & riba, 52 daily infergen & Riba.) I responded & then relapsed both times. I have also done 6 mths. of Pegasys maintainence. My VL is presently at 1,600,000. I have been left with terrible sides, Neuropathy & Cryoglobulin. Have either one of you experienced any lasting effects. I have decided no more treatment. But when the numbers progressively continue to rise, I don't know what I'll do. 1B, grade 3, stage 4, with beginning cirrohosis.
My thoughts & prayers are with you both,
Sandy

[louisianawomen]

Thanks, I need all the prayers I can get. I'll be sure and offer up one for you also. I think about what he went through for us and sometime I feel bad for feeling bad. But this isn't one of those days.

[Penelope1911]

OH MY!!! I don't know what to say...I am so sorry you are going through this. Weekends are slow around here, but I know there are so many others that could really give you the support you deserve, I know quite a few around here that are on 2+ times and they could really give you some good advice and support. You will be in a special prayer tonight Lousisianawomen. mkeela.

[louisianawomen]

4th time on tx. and right now I don't feel it is worth it. I've done the PegIntron, Infergen and Actimmune. Back on the PegIntron this time again. I can't seem to handle anything but the alpha interferons. Tried ye ole combining interferons also and couldn't do it. It seemed to get my viral loads down on the PegIntron and I'm hoping this time I can stay on it long enought to sustain. But it does help to know people like you are out there to give some support. I'm only on week two this trip and I'm already considering WHY. Just wanting support for the agressiveness and mood swings. Yep I'm on AD and sleeping meds and arthritis meds and pain meds and blah blah blah but nothing seems to help the old mind floating. I'm 54 and was hoping this wouldn't happen for another 20 years anyway. But super super thanks for caring and I'll take any advice I can get.

[Penelope1911]

Do you mean your fourth time doing tx? Or your fourth "shot"?

Im so sorry to hear that you are having troubles mentally. I know how that feels. I begin seeing a therepist this week so maybe that will help. Are you on ADs? I guess I am not quite sure where you are at. I am on my fifth week right now, and the loneliness is getting pretty bad along with the moodiness, the lonliness is due because I feel no one around here understands...and they don't.Mental "tracking" (remembering) etc. is WAY off.

I hope you feel better soon and also hope you weren't saying that this is your 4th time doing tx...how terrible. Post your stats back and maybe someone can help with better advice.
Blessings to you, and remember this is all worth it in the end. Mkeela.