Saw my Doc yesterday , got a new drug....

Hey ya'll.
I saw my Hep Doc yesterday about my dropping hgb levels. I had dropped a little further , down to 11.2 from a base line of 16 five weeks ago.I started Procrit a week ago and the doc said that because this drop wasn't as dramitic as the previous drops ,maybe my first shot was already helping to level the hgb off.( I didn't tell him I screwed the first shot up , some things are best left unsaid) , anyway.. We had discussed the serious Brain Fog that has been houding me and how it has really started to effect my work (engineer). He gave me a prescription for Modafinil (Provogil) and said that he was trying to work it into tx whever it seemed appropriate. I took the first one this morning and so far I have noticed that I am having a more pleasant than usual morning of work , still tired as h*ll ,but awake and possible thinking clearer. Here is a link to information about the med.I would really like to know what some of ya'll think about using a drug like this during tx.

http://www.modafinil.com/

[Dale_Ray]

Thanks for sharing the info and glad the skies are clearing this morning for you. I hope it holds up without any other problems. Good luck to you. Dale

[friole]

Your doc sounds great.  Procrit before you crashed hard and now a brain fog drug.  I have never heard of it but that was my one criteria to stay on tx- I would not lose my profession over this tx.  Brain fog would be the one thing to make me stop.  Fortunately it has never been bad (at least not worse than always)

[jmjm530]

My hepatologist routinely prescribes Provigil for treatment related fatigue. Unfortunately, I couldn't take it because of some gastro problems I was experiencing.

Some recent study articles on the Projects In Knowledge web site discuss at length the two-part approach in treating interferon-induced psychological symptons.. The gist of it is that
the two common symptons -- fatigue and depression -- cannot often be treated by the same drug. Therefore a stimulant such as Provigil may be prescribed for the fatigue and an SSRI anti-depressant like Lexapro may be prescribed for the depression.

Not sure how this relates to Provigil, but many of the stimulant drugs such as Ritalin are somewhat addictive with the usual consequences of requiring higher doses and withdrawal issues. Something you may want to discuss with your doctor, but still if it keeps you working, sounds like it's definitely worth a try.

-- Jim

[jmjm530]

Here's the article by Dr. Andrew Miller I had remembered. There's also a webcast if you'd rather watch/listen. He uses slightly different terminology than in my last post and also mentions different drugs but the gist is the same and the drugs mentioned I believe in the same category.

http://www.projectsinknowledge.com/Init/G/1700/1700-TxReporter.pdf

[NYgirl]

Wait a little while and the Procrit will work. Remember it takes WEEKS to "kick in" as it has to help your body and it's a long process for the bone marrow to begin to grow new RBC's or however it does it.  It's not like a shot of a stimulant that will just make you feel better - it has a big job to do, so it takes a while.

I personally was leery of the Provigil. I am on an AD and a sleeping medication already - and that is enough addictive medication to already have to go through withdrawl (withdrawal) from later.

While the lethargy is HORRIBLE - I just consider it a side and unless it was like when I had the drastic hgb drop I need to stay away. I already have too many meds on board. I wonder all the time if any of them actually have any effect on the Int/Riba - I was convinced at one point that the Epogen was going to ruin my chance at SVR for some reason LOL.

It's great you have a very proactive doctor but try and remember with addictive meds...the more is not always the merrier. As an ex hard core addict I had to learn that the hard way and going through withdrawl (withdrawal) is ALWAYS something I think of LOL = never wanna do it again in my LIFE! :)

[doglover28]

Hi NYGirl,

I just want you to know you are one of the most positive people on here.  What is the key to staying so upbeat?  I need to know. The rest of you are pretty upbeat as well.  

[52TELE]

Hi nyg, I wanted to tell you how sorry about your friend dying. It all  a little sadder when the person has a talent that can touch other peoples lives... It seems that there is an inordinate number of musicians that contract HCV. Its really like a period at the end of the sex,drugs and rock n roll lifestyle.

The pharmacolgy I have read about the Provigil indicates that in 14 day tests , zero withdrawal symptoms were noted but that test patients with narcolepsy got sleepy again. I really dont think this is the wonder drug of the future , but I tucked my shirt in this morning for the first time in a while.

Take care ,


"it's still not weird enough for me"
Hunter thompson

[NYgirl]

If we knew now what we thought we knew then....or some such thing you know? When I was in my 20s I KNEW i KNEW everything...now in the 40s have to pay for all that knowledge ;) I mean who was I hurting with all my partying! Leave me alone I'm not hurting anyone!!! LOL Now I found out exactly "who" I hurt duh duh duh!

Thank you for the kind words re my friend Frank. He just couldn't stop and he REALLY paid the price. He was the nicest man in the world and the only person he ever hurt turned out to be himself. It makes me realize how lucky we are in here!

If the Provigil works for you go for it! Me...I'm too much the addict probably would never want to get rid of the extra "boost" of energy. That would be too hard for me to do!

It's funny given my history but now the concept of putting any "drug" in me that I DONT need kills me! Although I smoke so look what a liar I am with all those drugs being inhaled! And why do I not worry about THAT hurting my chance of SVR??

When my hgb went from 15 - 9 in ten days that hurt and I could have used it then...but honestly I don't think it would have helped I was just too sick. Fainting isn't feeling "bad" you know it's like a heart attack the world just stops bam!

My hgb is 11 now and I feel fine. In time most of us get used to the lower oxygen levels in our blood and are able to function pretty well.  I come to work every day and HATE that I have to but...if I saved all the money I spent in the 80s/90s I probably wouldn't have to.

Again WHO was it I hurt? LOL me...the idiot.

Hope if it's shot night you have an easy one!  :)

Debby

[NYgirl]

Boy oh boy you haven't heard me on a bad day then huh LOL!  I can be the WORST complainner of the BUNCH!  :)

I consider myself really lucky. I mean I HATE treatment and this disease but all in all...if I had to use up the "I have a disease ticket" I'm just glad it's one that progresses so slowly, that didn't hurt my family or ex-partners, is hard to almost impossible to transmit and I didn't even know I HAD until a ramdom blood test pulled up very high liver enzymes!

It does help me a lot of I remember those things you know?

Plus...finding this forum and not feeling so ALONE anymore (I felt so contaminated and embarrassed when I first found out, then I found the people in here were so loving and nice and kind and great people) and when I saw the quality of THEM I said wow it's OK...these people will help me!

And you knoow Doglover - the people in here WILL do anything they can to help you for REAL.

So remember - when you get down to try and think of the pluses.

My own personal plus is....day after shot night I give myself "day of rest" day where I lay in bed, eat ice cream and watch tv. That seems to carry me through the ENTIRE week cause it's like a mini vacation!  :)  Something I've NEVER gotten to do or enjoy since I was a kid!  A DAY OF REST WAHOO~! :)

Find some things that are a REAL TREAT to you and enjoy them.  My personal one is Fudgicles.  And tv. And then  live LARGE and feel so happy that it cannot translate on to the board!   :)

Debby
Best of luck with everything! Keep on posting it's a good way to make friends and keep yourself occupied with the good things! And the more you learn...the better you can fight these stupid sucker virus' and kick them in the head!!!!!!!!!!!!!!!!!!!!!!


:)

ps I'm a doglover too. My dog is "Bailey".   :)

[can-do-man]

ny girl says.......My dog is "Bailey"........ Now was that very nice? i mean beagle barks a little but to call him a dog, His hgb is low and his daughter don't feed him real food.

[can-do-man]

nygirl says.....So remember - when you get down to try and think of the pluses.

Care to explain that a little more? And don't ignore me.

[doglover28]

I remember when I first posted and you replyed about how you found out during a routine physical just like me.  Thank god I went for a physcial.  I called my daughter's doctor and told them I can't wait until the 23rd of May to get her blood work done. (That's when her physcial is).  They are going to do it on Tuesday May 2nd.  I was having a meltdown earlier. I went on a 14 mile bike ride through the woods and just cried. I was so mad at myself for being stupid in my youth. Speaking of riding, I didn't eh Five Boro tour in NYC last year.  I would like to do it this year. It's next weekend. I'm trying to get someone to ride up with me.  It was fun!  It's 42 miles through all the boroughs.
I have three dogs.  They are rescues. Rat Terrier, Min Pin, and Beagle/Chuiaua (SP) mix.  
I'm sorry to hear about your friends passing.
Pam

[doglover28]

The post above was to you.  Forgot to put your name in the comment box.
Yeah, I visualize those slimy little virus $&*(@#Ds drowning in all the water I drink.  There day will come

[fishdoc]

Provigil, please keep us informed!!  I hate feeling like I take my salary and don't give 100%.  Boss told me not to worry, I did more than most if I only got 1/2 done what I usually do, but somehow that doesn't help.  I have several big reports /plans to work on, and I just sit and zone in front of the screen...literally some days I get one page done..

[can-do-man]

Your right, except for me they have all been nuts today. Do invest, jim alone will make you a fortune. And also if you or anyone figure out what the heck they are eating, got to be some money made there. And if you decide to take out the xmas tree do like i do. i leave everything on it and put it in  the closet. All ready to go again.

[can-do-man]

Hey gal how are you? As for your work, i know what you mean. But then my boss told me that for years i put in more hours then was asked. I'm on salary so he said look, its your turn to get something in return. So when you need too leave early or come in late. Do it. So far he's not let me use a vaction day,sick,or personal day. He Knows i wouldn't take advandage of it. Plus this is temp. i'm sure you have always been the same way since you love your job. So we'll make up for it. So just do as your told. And take it easy. Remember were the sane ones here.

[dyce]

Thats swell of your boss to cut ya some slack there. Salary positions are hard cause of all the hours. Fishy I wouldn't fret , the gov will get thier full steam ahead fishdoc , when ya get svr. Whens your pcr?

[fishdoc]

Can man and dyce, yes, I keep telling myself the same things, but I hate feeling braindead.(couldn't remember if I had already hit the button, went back to forum and looked, hadn't shown up yet-ergo twice)  Called my son and he looked up provigil on his pda- looks like a stimulant, but not really an amphetamine type analog- "action unkown".  I'll be interested in hearing more about it.  I would be a little afraid of a speed like stuff, because I know how tht works, clean like heck today, die tomorrow....

Dyce, this is shot 12 tonight, and next friday is my PCR, probably what? 10 days to get results??
You should be on what, 8 or 9?  


can man, what shot are on you on?? Are you a friday night man?

BTW can any dam body telling me why the wind starts blowing like he LLs fury on friday afternoon!!!!

[can-do-man]

fish says....... but I hate feeling braindead.

Hate to be the one to tell ya, but SVR doesn't help that.

[strator]

...can any dam body telling me why the wind starts blowing like he LLs fury on friday afternoon!!!!

Yes. It's because tomorrow I plan to finally rake the leaves in my yard from last fall. God was lining them up for my convenience this week.
He did show a sense of humor, he blew most of them into the pool, which apparently sprang a leak last week and now the deep end is only 4'deep instead of 7'6. I have to figure out how to get the water to fill up and stay in so the cover raises and I can drag it off and THEN find the leak.
Speaking of chores, my son asked me if I might consider taking the Christmas tree down and out of the living room this weekend. Before he plans any pool parties I guess. Ah the priorities of youth.

[can-do-man]

said.....Are you a friday night man? Baby i'm a everynight man. Oh i see now shot night is sunday. And "I THINK" it will be doing shot 19

[can-do-man]

You know me not to be the one to tattle tale. But the girls have been the worse today. And could you talk to jim? He's kinda going through a change? I think its a age thing.

[OnAPrettyPoison]

I am sorry about your friend - and I miss "talking"  to you, but you are on during days and I can't come on till nights!  I am glad you are doing okay!

[Mister beagle bailey]

Hi Deb,
I'm really sorry about Frank and your right some poeple just can't stopped hurting them selves.  Thank God, most of us have out grown our past.

CAN DO
Man you don't miss a beat LOL and BTW along with NY girl  my dog's name is Bailey too.  Did you what FLguy wrote on his thread near the bottom? He addressed it to you and told you to run with it.

BEAGLE

[strator]

Do NOT make me stay home from work! I need the money to invest(got a hot tip on creme de nutcase lotions goin faster than riba).

Usaid...not to be the one to tattle tale. But the girls have been the worse today...
And just who exactly are the girls? Goodness gracious, the girls get feisty, the guys are sitting around in riba robes reading 'Mothra' Stewart mags. People are dissing Cheyenne, that's IT! Everybody outta the pool!

[can-do-man]

Oh i see with nygirl. Shes my sweetheart and i love her to death. But when somebody starts calling a friend of mine a dog then i feel i should speak up.:) Plus i just love messing with her. I told her not to ignore me, but she did. She'll answer last weeks e-mail tomorrow. Now don't go chasing any silly wabbits and lets hope your hgb don't go lower.

[fishdoc]

Provigil, please keep us informed!!  I hate feeling like I take my salary and don't give 100%.  Boss told me not to worry, I did more than most if I only got 1/2 done what I usually do, but somehow that doesn't help.  I have several big reports /plans to work on, and I just sit and zone in front of the screen...literally some days I get one page done..

[Mister beagle bailey]

You said: NYgirl will answer you last weeks e-mail tomorrow, and you love messing with her.

-----------------------------------------------------------------Well, I think she's the one who's messing with you, as she has you chasing those silly e-mail wabbits of last week, and only reading them tomorrow. LOL ----------------NYGIRL 2 -- CAN DO 1.

BTW  How are you feeling?  You do your shots the same day as me Sunday, right?

BEAGLE

[can-do-man]

Doing really pretty good, fight fatigue, trouble sleeping, And yes i do mine on sundays but i think im gonna change to saturday because it seems it takes about 16 hours before the shot effects me. And the shot just only makes me feel kinda sick to my stomach for a couple days. Never was one to let being sick get me down. Really never been sick to much, Kids and grandkids would catch everything going around and then my wife would get it, but some how not often i would. Thats why when i went in for a check up and found out i had hep-c and bx showed stage 4, i couldn't believe it. The only thing before was i was getting fatigue alot.

[Mister beagle bailey]

Glad that your feeling pretty good.  The same with me, I never felt like I was sick just tired and blamed it on the thalassemia, then I go in for blood test and ck up and I'm told I have hep C.

Beagle