lead ballon

Heading towards shot 4. So far there have been few side effects from treatment. The worst being feeling as if my mind and body have been enclosed in a lead ballon what I am sure everyone means by brain fog.

Also just as an aside I find I am really hungry which i was not expecting since we read so mucy about weight loss here. Still trying to work out a little yoga mostly just a couple of times a week although last night I was not able to finish the class I still felt better afterwords.

If I have any question it is this as any one noticed how they feel durning tx in relatiionship to eating.

Any thoughts on how to help the brain fog lift? If the fog has started already should I be expecting it to stick around through out treatment get better get worse?

[amommy]

Glad to hear that overall the sides are being kind to you!  I too have been VERY hungry on tx.  I think something is wacked out with my blood sugars though.  I CONSTANTLY have to be eating in order to not feel terrible.  It isn't what I expected at ALL. I definitely could stand to lose a lot of weight, and I was hoping that would be one benefit of tx!  
About the brainfog.  I have no clue how to make it better!  Hoping that once tx is over it won't be long before my brain works, at least a little bit, again.  
Hang in there! :)

[Dale_Ray]

You're lucky that your appetite is holding. Mine shut down and I had to force feed myself for 12 weeks and nothing had flavor. As far as the brainfog I am on week 19 and its about the same as week one. Just not as quick as I was and personality has gone to pot. Good luck to you and hope the ballon gets lighter. Dale

[NYgirl]

Things will begin to iron out for you after a while - right now your body is going through a major attack, it's not used to you pushing in poison into it like you are you know?

Brain fog is one thing - do you know your HEMOGLOBIN because to ME it sounds like you are really getting anemic. When I had the problem my head...I couldn't pick it up, I kept fainting and my brain literally felt like it HURT inside my brain - I mean it was painful for REAL.

Brain fog is just a sense of confusion or forgetting things and being a bit "foggy".  If you are having serious things MORE than that well - around week 4 was the week my hemo dropped drastically and that was what that was. NOTHING to do with brain fog.

Do you know what your hemo is at right now when was the last time you were tested are you being tested WEEKLY right now you sure should!

[timedog]

Was just tested on Monday for white blood cell count dr. was afraid it had dropped to much to quickly, but results where good they had returned to normal. wouldn't be seeing dr or getting tested again for a couple of weeks jewish holiday and all that.

Brain fog is not as bad as nygirl described just a fog that kind of reminds me of what it would be like to be in maxwell smarts cone of silence (oops showing my age here).

The two things that seem to help are working on task that are both physiical and somewhat menatly challenging.

The other is where I force my self to socialize.

Have to confess here I am not up on all my various numbers, never been my thing, I pretty much have put my trust in my Dr to date. Which brings me to my next question/point after my first check in with him week two of tx my numbers where going in the right direction his big concern was that my whiteblood cells had dropped (mentioned earlier in this post) he posited a therory that since the treatment was working the right thing to do would be to lower my pegasinterfeon dossage to help the white blood cell count. As it turns out it was not necessary just wondering others thoughts on this.

[NYgirl]

That's the correct point - it sounds like a blood oxygen shortness is why it makes you think of the hemo.  Regular brain fog is a ROYAL pain but it's mostly just forgetfulness - I too am wondering what timedog's hgb really is at in this.

I've been working the whole time and just got moved "over" my boss is tired of having a stupid idiot tired woman with brain fog working for him (we just don't get along at ALL) but I do know...there are things that I forget, I can't help it it IS the brain fog!

[timedog]

Sorry to hear that nygirl obviously a big concern for me as well work that is. Since I weren't born rich and have a daughter going to college next year alimony and a mortage as well I have no choice but too work and work in a pretty challenging atmpospher. Soooo the report on all the sides expcecially brain fog concerns me greatly, I am stupid enough as it is couldn't stand to be too much stupider.

[Mister beagle bailey]

Hi,

I agree with NY girl that drs. do and can make mistakes.  Can't tell you how many times over the years it has happened to me and people I know.

I 'm also from the school of Jim along with NY Girl. Smile Deb things will get at work too.  :)

          Beagle

[GoofyDad]

Ribavirin can act as a stimulant, accelerating our metabolisms. I sometimes I ate more than normal, sometimes less. Overall, I'd say my caloric intake probably ticked up a bit, while physical activity plumetted. I lost about 7-10 lbs over 6 mos. Often I was hungry and not hungry at the same time. Very strange.

My hepatology clinic doesn't seem to feel a dose reduction is the end of the world. Most literature seems to agree. Of course full meds are the ideal, especially in the early weeks, but as I said, they don't freak out about a reduction. At the same time, they are very agressive with support drugs, and will let blood counts go lower than many other Docs would.

Best of luck to you.

[timedog]

ok i give up what is the school of JIM

[Mister beagle bailey]

Jim goes by the name JMJM on the forum and is where Deb and I learned alot about paper work, etc.  He's also where I go if I need answers to some thing.  All on here are very knowledgable and helpful. But we all ask Jim.  Guess it's just the way it is.  Hope this help.

     Beagle

[NYgirl]

Jim is jmjm who is a very progressively educated member of our forum who absolutely saved my life when I joinned - any important question was answered. Jim told me about the "weight based vs. manufacturer based" dosage differences in Ribavirin and because of him I looked in to it myself and although my doctor had only put me on the 800 Riba day I chose and asked to be upped to the Manufacturer recommended 1,000. I believe in my heart every little bit helps - I have had a hard time for my weight taking the meds of a 200 pound man but it has paid off.

As a geno1A and geno 1B I wanted to go after this virus VERY aggressively.  I would rather do this HARD the first time and get rid of it rather than have it a bit easier and have to do it AGAIN another time.

Jim really pushed the envelope taking the Riba (I think at one point he was on 1600 or more) a day and he had to pay for it physically big time but, he does have SVR going on so to ME that is what matters.

So school of Jim I guess would mean a very aggressive fighter of the disease (who tends to get carried away LOL)

[Dale_Ray]

My whites dropped severely at four to five weeks. Doctor placed me on Nupogen shot 24 hours after Pegasys shot. Everything I've heard and read says to not reduce amount of medications if at all possible. Not sure if that is correct or not but I've told my doctor whatever we do I didn't want my meds reduced. This is my last try with these meds and I want to give them a chance. Reducing will reduce their chance of success. Personal theory. Dale

[NYgirl]

Cant really give honest advice on WBCs and stuff without knowing where you are on any of it but the Neupogen should iron it out FAST.

I don't trust just my doctor and prefer to have the numbers and figure out for MYSELF what is going on. Too many doctors have made too many mistakes. I believe that educating ourselves and being reponsible with our own treatment decisions and not trusting blindly - makes a HUGE difference in the outcome.

but then again...I'm from the school of "Jim" :)

[NYgirl]

We never ever ever want to reduce meds except as a LAST alternative - Dale is 100% right on that. Otherwise doing half treatment gives you so much harder a chance at SVR it's not worth it perhaps. The meds are set at what they ARE figuring us the BEST chance at UND possible - cutting them down seriously hurts that chance especially in the first 12 weeks.

Kind of surprised your doctor isn't aware of that fact. The first 12 are crucial to you - don't drop unless you are dying please!

[Algernon]

I'm fairly thin and worried about weight loss.  But my appetite has been good with no weight loss at all.  In the first few weeks, I sometimes forgot if I ate or not (so my appetite and brain must've taken a hit).

Everyone's different (the mantra) but my brain fog got better after about week 6-7 (now at week 14 and feel only a little stupid--like I would with a bad cold).  I think the worst of my fog came with the anemia--be sure to stay on top of that.  I had the IQ of a snail during the anemia.

[timedog]

As I said I will not be lowering meds because white blood cells returned to normal. What I said was the Dr. expressed a current therory that if the med's are doing their job at the current level that they ay continue to do their job at a lower level.

Anyway no worries for now as everything is status quo for the moment.  By the way I totally respect those of you who are able to take full control of your tx. It is just not how have ever done anything in my life. Righty or wrongly I tend to put my effort into finding experts I can trust and going from there. Not that I don't want to be informed, hence i am here. But hey that's what makes horse racing.

[felinesrme]

Glad to hear that you are doing well on Tx (treatment).  I completely understand about the brain fog, I too feel like I am in a tunnel or room that sounds bounce off the walls.  Can be very nerve wracking.  Find that if I concentrate on one task at a time, the job gets done.  You may want to mention to your dr or nurse about these symptoms and possibly have the HGB checked, this is where the red blood cells carry oxygen to the body and organs and if the HGB is down that would effect the brain function too.

Always keep copies of your labs, and medical records.

All the best to you and keep us posted on your journey.

[Mister beagle bailey]

he who (some times gets carried away)  LOL

Beagle:)

[NYgirl]

hahahahahaha you.  me. jim. cando everybody LOL

We are those type people when we do something.....we do it BIG TIME hahahaha.

Man I am still over the MOON at your GREAT news.  It really helped me get through yesterday.  People who decide not to treat...how sad they won't get that FEELING...it is honestly one of the greatest in the world.

Almost as good as a dog kiss or a fudgeicle!

[roaming]

just curious - is this considered chemo therapy? I think so. I have told people that hubby is on chemo and of course they think cancer. When they say that, I say no but it is to stop that. He is 3/3, which scares us. No choice in therapy we feel. What is the difference between procrit and neuprogen?

[Mister beagle bailey]

I know what you mean that they'll never know the feeling of being Undetectable.  It' a great feeling as we both know.

How is work today?  I guess you didn't read my e-mail lasy night.  I talked about your job, etc.

Thank you for always being there for me durning this wild ride, it's people like you and the rest that made it so much easier to handle.

Beagle :)

[cajunlady]

That was GREAT.  So, So true.  Thanks for posting this; I am sure many of us can relate to that.  I am lucky to remember my name of some days.  I am sure everyone here will enjoy this one.

cajun

[can-do-man]

hows one of my favorite gals here today. Did you see where im going to be fisheress new pool boy? Tough job, but somebody's got to do it and do it and do it.

[can-do-man]

That was a good one. Only thing is i know now i've always had brain fog.

[NYgirl]

You know i just realized I stutter, stutter huh?  ;-)

I did read my emails and wrote back this morning ;-P

So Fisheress huh?  Hum I don't want to be getting jealous or anything but nobody has offered to be MY Cabana boy?  I'll get her.......oh yes I will......little piggie! hahahahaha

I am SO GLAD it's treatment night tonight! SO GLAD! It means YAY kick some virus but (not that there are any IN there but) and I don't have to see my boss tomorrow!  What's worse the virus or him? HOnestly I really think he is - at least the virus kills you quietly hahahaha.



Bailey - you are SVR.  You know it I know it let's call it what it is and well.....you've already killed them all off and they ain't coming back. I think your LOW hemo did it - your secret killing machine! They couldn't grow with no oxygen right?  YAY!

[can-do-man]

have you already forgot? since you have to go nude this summer i'll be there to block the sun for you. Another tough job. But my gals come first here.

[Mister beagle bailey]

Didn't think about with low oxygen not allowing the virus to multiply.

I think your losing it. I didn't get any mail from you today.  LOL

Beagle

[NYgirl]

I did - I sent it on this stupid webmail from work it's probably sitting in there somehow. I'll be home all weekend so be prepared to be clobbered with them LOL.

I can't even believe it they just fired TWO PEOPLE here out of no where - hard workers, really hard.  This one lady just came out crying I felt so BAD I know how it is - that's like man oh MAN.  So between the low oxygen and stress I maybe wrote to myself? I'll have to check my inbox hahahaha.

[Mister beagle bailey]

Wow, they fired 2 and they were hard workers.  I feel bad for them, but glad it wasn't you.  

Maybe you did sent it to your self, LOL.

Talk to you later.

Beagle :)

[dyce]

Thanks for your experiences, I'm goin to pcp tuesday and he is going to have a cbc drawn that day , so that will be a 12 day spread from the last blood draw. Then I'll have another draw on the 13th which is 9 days later , so that will keep me under the 2 week spread a few days. I hope to hold up , so far I'm keeping the fingers crossed.

Dyce

[fishdoc]

Hey BB. I do shot 8 in about an hour, I'm a 1A so I have 40 mo to go, et tu?  

Azgirl, shot 8, and I am starting to lose hair.  Even worse, pit hair, leg hair, seems to be growing like weeds.  I turned 50, I'm going retro.  see how long it gets... whole new type of combover....I spent the week in a motel, and please G. let it be the lighting, but I am like yellowish green?  I know I'm from southern new mexico, near the big crash site, but jeesh... mottley ugly, reddish blotches, straight from the x-files.  Thank god I don't feel as bad as I look.

[GoofyDad]

I keep tellin' Forsee her butt's gonna be hairier than a briar patch, but does she believe? Hell no! Fishy, would you pls tell her she's gonna be bent over pullin' weeds in that city slicker veggie patch and they're gonna think Link from the Mod Squad has made a come back? Maybe she'll listen to you.

If I had her address I'd send her the new EpiApe shag remover.

[fishdoc]

Jeez thanks a lot.... hair migrates downward with gravity... hmmm.  Big question, JmJm, others, how long does it take to LOOK normal again?

[can-do-man]

blabs.....how long does it take to LOOK normal again?

You had to look normal to begin with. Does that answer it for you? Glad you made it home safe, take care, and keep your shoes on

[roaming]

thank you for your replies from water thread.
bloc - i thought you may have been closer to him so that is why i wondered what you meant about feeling better.
Beagle - he just did you 2 week blood test in the morning. So we don't know where he is yet; but it sounds like you dropped quick too. He does autobody repair which is pretty physical and he already feels drained. I asked him again about the spinning last night and it sounds like he was extremely lighted headed to the point of scary. He says he has been lighted all week. Only 2nd shot.
Nygirl - he doesn't smell anything. He tastes it. As soon as he as the shot. Is that what you mean?
Thank you all for your comments. I have read some of the messages to him tonight. He is not sit and read messages person but so far did not mind me reading to him. (hopefully no rage because I will be here). Please don't get upset with me posting questions for something I am not experiencing. I will continue to try to get him here even if he dictates.

[roaming]

thank you for your replies from water thread.
bloc - i thought you may have been closer to him so that is why i wondered what you meant about feeling better.
Beagle - he just did you 2 week blood test in the morning. So we don't know where he is yet; but it sounds like you dropped quick too. He does autobody repair which is pretty physical and he already feels drained. I asked him again about the spinning last night and it sounds like he was extremely lighted headed to the point of scary. He says he has been lighted all week. Only 2nd shot.
Nygirl - he doesn't smell anything. He tastes it. As soon as he as the shot. Is that what you mean?
Thank you all for your comments. I have read some of the messages to him tonight. He is not sit and read messages person but so far did not mind me reading to him. (hopefully no rage because I will be here). Please don't get upset with me posting questions for something I am not experiencing. I will continue to try to get him here even if he dictates.

[Mister beagle bailey]

It's not a problem with you posting for your hubby.  All are welcome here and we will help when ever possible.  Do get the HGB tested, reading what you just posted about him being light headed all week and feels like he's spinning makes me think HGB is low or dropping to fast.  Almost all who treat get anemia from the riba.

Hope you both have a good night,

Beagle

[MissMiss]

Ran across this and thought of all us brain fog victoms.  Enjoy.

My forgetter's getting better,
But my rememberer is broke
To you that may seem funny
But, to me, that is no joke

For when I'm "here" I'm wondering
If I really should be "there"
And, when I try to think it through,
I haven't got a prayer!

Oft times I walk into a room,
Say "what am I here for?"
I wrack my brain, but all in vain!
A zero, is my score

At times I put something away
Where it is safe, but, Gee!
The person it is safest from
Is, generally, me!

When shopping I may see someone,
Say! "Hi" and have a chat,
Then, when the person walks away
I ask myself, "who was that?"

Yes, my forgetter's getting better
While my rememberer is broke,
And it's driving me plumb crazy
And that isn't any joke.

CAN YOU RELATE???

[PKCO]

Dr Jamie Mandac and colleagues from New York reviewed the literature to assess the current evidence.

The team noted with prospective studies that up to 15% of patients with Hepatitis C receiving interferon-alpha develop clinical thyroid disease.

Up to 40% are reported to develop thyroid antibodies.

The team observed that some of these complications may result in discontinuation of interferon therapy.

Interferon induced thyroiditis is a major clinical problem for patients receiving interferon therapy, and can be classified as autoimmune and non-autoimmune.

Autoimmune interferon induced thyroiditis may manifest by the development of thyroid antibodies without clinical disease, and autoimmune thyrotoxicosis.

Non-autoimmune interferon induced thyroiditis can manifest as destructive thyroiditis or as hypothyroidism with negative thyroid antibodies.

The researchers found that early detection and therapy of these conditions is important in order to avoid complications such as cardiac arrhythmias.

It is not clear which factors contribute to the susceptibility to interferon induced thyroiditis.

However, the team studied recent evidence, which suggests that genetic factors, gender, and Hepatitis C virus infection may play a role.

In contrast, viral genotype and therapeutic regimen were not found to influence susceptibility to interferon induced thyroiditis.

Dr Mandac's team concludes,

[dyce]

Good mornin fishy, I've been busy this week and didn't get to talk to ya for a while. How did shot 8 go there? I did 5 last nite at 5'30 and it's 542 am and I feel ok but the peg seems to hit me the hardest on sun and mon after doin it on fri.

How are you, Dyce