SX MAY BE TO MUCH

HELLO EVERYONE!  I NEED TO KNOW IF ANY OF YOU REALLY CONSIDERED QUITTING TREATMENTS @ WEEK 7/48?  I KNOW I FELT RAN DOWN ALL THE TIME BEFORE TX. BUT THIS IS GETTING TO MUCH TO HANDLE.  EVERYTHING IS A MAJOR CHORE.  SHOWERING IS EXAUSTING.  WALKING ACROSS THE LIVINGROOM IS ALSO EXAUSTING.  THE MIND RACING WHEN I LAY DOWN AT NIGHT TO GO TO SLEEP.  I THINK OF THINGS I HAVE NOT THOUGHT OF IN MANY YEARS.  MY MIND IS LIKE A RADIO STATION THAT IS ON SCAN, EVERY FEW SECONDS ON TO ANOTHER THOUGHT.  WHEN I FINALLY DO GET TO SLEEP IT DOSEN'T LAST LONG 1 TO 3 HOURS AND MY EYES POP OPEN JUST TO START THE MIND RACING AGAIN!  I'M A WRECK, MENTALLY & PHYSICALLY, I'M EXAUSTED.  AT THIS POINT I THINK I AM WAY WORSE OFF THAN BEFORE TX.  I SEEM TO BE OKAY UNTIL MY 3RD SHOT.  EVER SINCE THE 3RD ONE IT SEEMS IT DOES NOT HIT ME UNTIL AROUND 12:00 SATURDAY BUT RUNS THROUGH THURS. OF THE FOLLOWING WEEK JUST TO START OVER ON FRIDAY.  I USE TO HAVE GOOD DAYS AND BAD DAYS, NOW IT SEEMS TO BE ALL BAD DAYS.  PLEASE SOME WORDS OF ENCOURAGEMENT ARE GREATLY NEEDED.  I GO TO MY GI ON WED., THE 5TH, I WAN'T SOME ANSWERS:  WHAT STAGE AM I, WHY NO BIOSPY, HOW MUCH MORE BEFORE PROCRIT.  THE SHORTNESS OF BREATH IS REALLY SCARY.  WORSE THAN THAT IS THE CHEST PAINS THAT I HAVE BEEN GETTING RECENTLY.  ALSO PAIN IN MY LOWER BACK AROUND KIDNEYS!
THANKS FOR LISTENING,

MARSHA

[NYgirl]

Wow Marsha you really are having it so rough!  I am so sorry to be reading that, my heart just goes out to you so much.

You better jack that doctor and find out what the heck is going on!  It sounds like you are so much in the dark here!

I mean if you have had no biopsy how does he know that you need to be treated right now anyways? What if you were like Stage 1 Grade 0 or something?

Boy oh boy.  I hope you get some answers and FAST.

It sounds like every day to you is my Saturday - and I couldn't handle it like that at all.

Debby

[cuteus]

IT IS ANEMIA you are experiencing and unfortunately a lot of drs wait until you are at deathbed before prescribing Procrit. You must insist on it in order to continue tx. Look at the list of anemia signs at
http://www.emedicinehealth.com/articles/4893-3.asp
pretty scary stuff. I had to tell them that I was having chest pains, not GERD related before it was given to me. It makes a world of difference, no more shortness of breath, chest pain or aches. You have to insist.
as for wanting to quit tx, yes, everyday for 72 wks I wanted off the meds. But I wanted off HCV even more.
go to projectsinknowledge.com and print the section on staying on tx, geared to the providers, print it and discuss with yours
http://www.projectsinknowledge.com/recent/indexg.html

get help from your GI or PCP for a sleep aid. Symptoms have to be dealt with for us to be able to have a good shot at SVR.
GL to you

[mrodriguez112704]

YOU ARE SO RIGHT!  I DO NOT UNDERSTAND WHY HE IS TREATING MY WITHOUT KNOWING WHAT STAGE I AM AT.  I DO FEEL LIKE I PROABLY GOT THIS BACK IN 1990, WHEN FIRST EXPOSED.  BUT STILL I WOULD LIKE TO KNOW WHAT STAGE I'M AT.  AT THIS POINT I AM REALLY CONSIDERING QUITTING.  I CANNOT GO ON LIKE THIS FEELING SO BAD EVERY SINGAL DAY.  I'M TRYING TO CONTINUE WORKING AND IT'S LITTERALLY TAKING EVERYTHING I HAVE TO COME TO WORK.  MY JOB IS IN NOWAY HARD, IT'S ACTUALLY FUN MOST OF THE TIME, BUT LATELY NOTHING IS FUN, JUST A CHORE.  I JUST WANT TO FEEL GOOD.  I KNOW WITH THIS ILLNESS I WILL NEVER FEEL GREAT BUT JUST DECENT WOULD BE APPRECIATED.

SINCERELY,
MARSHA

[NYgirl]

I know how you feel.  My job is HARDLY difficult but it takes all the energy just to shower and get in and SIT.  Who would have thought that sitting would be difficult!

I really hope that you get some answers.  I mean if you don't HAVE to treat now and perhaps could wait till something esle came along....

I think Cuteus is exactly right (and she is one who really knows all).  Somehow you have to get your doctor to be AGGRESSIVE with treating your sx = if procrit can fix you up and you can continue and get rid of these little monsters...that would be SO WORTH IT!

you have to print out some info so you go in armed to the teeth and can talk objectively to him.  That is what I did. I said what I wanted but then backed it up with research until he coulnd't say you are wrong...

Take the lead and make him listen to you.  I know you can do it.  You've dealt with so much.  I am SURE you can do this and make it more tolerable!  

I'll be praying for you, Marsha

[jmjm530]

It sounds like you may not be able to wait until your nextfdocto's appointment. I would call the office today and tell the nurse you're exhausted, out of breath and want to come in right away. Don't settle for anything less than today or tomorrow. If you wait too long, you run the risk of having to stop treatment because of the side effects or having the doctors temporarily stop your meds because they acted too late.

And make sure you convey the urgency and despair you conveyed in your post when you're on the phone. Many of us are holding on by a thread but for some reason get real strong and normal when we talk to our doctors. You have to let them know how you feel.

They should immediately do a Hemoglobin test and the results should be ready the next day. If your hemoblobin is below 11, or if its fallen more than a couple of points since you started treatment, then the symptons you describe are almost certainly anemia. In fact, that would be my strong educated guess right now.

If this doctor won't see you right away, or if he won't prescribe Procrit assuming you need it, you really have no choice but to switch doctors.

I've had the lot of side effects and anemia has been the hardest.

[sunspot]

Procrit is an injection only. Medicad varies from state to state and I can only speak about Alabama

Dana

[cuteus]

all I can say about your GI is GGGRRRRRR!!!!!!!
see if you can ask your PCP for help.

[carpedi]

I'm on week 14/48. At this point I think I've tried out just about every side on the list and detest them all!! However, they can and should be managed. If you want to get through this, and I truly believe the end result is well worth the effort, you're going to have to insist that each and every symptom that prevents you from functioning and makes you want to quit be addressed and managed by your doctor. The anemia that you have is very treatable with procrit - I'm on my 3rd week of it now and I can't describe how much of a difference it has made. As for the sleep thing, I had exactly the same experience as you, and you can't cope if you can't sleep. My doctor put me on something called Trazodone which, for me, works miracles. It has no hangover effects, in most instances it shuts down the buzz-saw of my mind about 40 minutes after I take it, and it is relatively inexpensive. You could ask about that or whatever your doctor would recommend for YOU personally - but ask for SOMETHING! It will be VERY hard to continue tx feeling the way you do now, so make your healthcare folks work for you. You CAN get through this. Good luck!

[Healed24]

Hi

I know exactally what you are going through. In fact I even posted a thread tiltled "I need some encouragement" a while back (you really should take a look at it as it was truly inspirational). I am on week 21/48 and I everyday I wake up and say, "this is it I can't take it anymore", right before I take my riba. I've been off of work since week 2 and I've lost 30lbs since tx. In addition to the interferon, I'm also on Procrit (to help with the anemia) and Neupogen (to help with the low ANC count), so I am all medicined out. I too feel like I have absolutely no energy ever, and since I'm in my early 20s it's really quite bothersome. I said all that to say is that the tx is hell but you can get through it. Just look to the future of not having the virus and you'll see that it's totally worth it. 48 weeks may seem like a long time (and on tx it is), but in comparision to many more years to come it's really not that long. I do however agree with the others that you need to get some meds like Procrit and sleep aids A.S.A.P. Why deal with all those horrible side effects if you don't have to. I say as agressive as you are in fighting the virus (and you are agressive or you would have quit already), get that agressive with the docs and demand some help. Just remember that you are bigger than this virus and you can and will suceed.

I'll keep you in my prayers.
Brooke

[friole]

texasgal, it sounds like you are feeling better now.  I am curious as to why you were on the infergen as I got the feeling it was your first treatment.  Why did they not start you with pegysys that is easier with the sx?  I hope you get to feeling even better and your mane comes shining back

mrod
I was rereading your older post.  How does all this factor in with your back surgery?  Are you still going ahead with that while on tx, or is that part of your decision in maybe dropping treatment?  Seems like surgery or no, you need to boost the hemoglobin.

[sunspot]

Linda. How are you feeling after 2 wks off tx?

Dana

[cquest]

Why are these doc so stingey with the Procrit? I hear the same thing over and over...I don't get it...
Cin

[Magnum]

Stay the course and don't give up, otherwise even the torture you went through so far will have been in vain. Get over the hump and your body will acclimate. There's nothing else out there for us at this time. Stay the course and curse a lot if it makes you feel better. In the end, you shall reap the reward.

Magnum

[brandnew]

I find that if I take a bath instead of a shower, and sit to wash, sit to wash my hair and sit to dry my hair, then I am fine to go to work in the morning.
If I try to shower before work like I used to before the meds, then I am exhausted.
try it, it works for me, wipes me out, but then I am going to sleep anyway. In the morning, just freshen up, make up and go to work.
God bless you and all of us in this boat.

[dammitjanet]

I have absolutely no words of wisdom to offer you - only my heartfelt sympathy for all you are going thru.  I know you are feeling awful, and you can't even have a good cry!  Dammit!! I sincerely hope that this all works out OK for you, and that the pot of gold will be awaiting you at the end of the rainbow.  You are in my thoughts & prayers for a speedy, healthy recovery.  Try to stay positive; visualize yourself as healthy and happy.  DJ

[texasgal]

Hi,

I know all too well what you are going thru.  I was on daily infergen and riba for 21 weeks and chose to quit.  My side effects were getting worse and worse.  The final straw was when I woke up one day and realized I have virtually no hair left.  I went from a full beautiful thick healthy had of hair to hair that was so thin, it won't even hold a pony tail.  I also experienced a slight stutter in my speech and my teeth were practically rotting out of my head.  It was a huge decision to go off the meds, but I could not live like that any more.  It has only been two weeks and I am not sure if I will start them up again at a later date.

I know what you must be going thru and it is a very personal decision to make, but know that everyone on this board is with you all the way.

Linda

[cougareyes]

I know exactly how you feel. I'm in week 13 and I feel bad all the time. I've only been able to return to work 2 days a week, 7 hr a day. Like all have said regarding the anemia.
I also have considered stopping, but I'm at stage 3 and feel I must push forward at this time. When I got my 12 wk pcr back undetectable it gave me a more positive attitude toward continueing.
Since you haven't had a biopsy it's a tough call on how much you should put yourself through. I wish you well.

[friole]

Marsha,
I agree with the others.Anemia.  I believe when your chest hurts that is a sign not to be ignored.  Have you been getting copies of your blood work?  If not, please call your doc's office and insist they run all copies for you so you can pick them up (or they can fax them to you) and post them here.  This is not to be ignored, Marsha.  I feel terribly for you - I have had some very tired days, but nothing like you describe.  It is a quality of life issue and must be addressed.   I understand some doctors say that insurance companies will not pay it for Ribavirin related anemia.  I believe they can use a chemo code (which, in fact this treatment is) and it will be covered.  I hope you are able to contine treatments.

How can we get these doctors to realize how critical an issue this is?

[Tonyz]

Marsha.


You stated that you are waking up every 1-3 hours...You need to address this, as you need more sleep to function.
Make sure you talk to you Dr about getting something for sleep. If you already are get something, you may need to combine a couple different drugs, to get the proper amount of sleep.

The importance of sleep cannot be stressed enough.


                        Blessings


                           TonyZ

[MichaelT]

Ah, yes. The evil Ribavirin induced anemia has struck again. I'm so sorry, on a number of counts. It is difficult to deal with - my big fear was getting pulled over by a cop and not being able to stand without help, not being able to walk a straight line, not being able to walk, etc. No, sir, I'm not drunk, I'm on drugs, but not in any kind of recreational sense, no sir, please, just let me lay by the road for 5 or 10 minutes and I'll be able to get back in the car just fine.

On my wish list of things treating doctors would do is discuss some specific, frequently occuring side-effects, identifying them, what will done with them, when to be concerned, etc. Anemia is on the list and sleep problems are on the list too.

The anemia must be addressed now. There ain't no fooling around with it.

Sleep problems have a way of multiplying or magnifying other problems into some serious issues. I hate to recommend medicating to address sides of other medications because it seems to never end, but for those of us who get hammered by INF/Riba, it appears to be necessary. The doc should be able to help you with finding a sleep med that helps you get some relief and some rest.

God bless! I feel for you.  -Michael

[nyhepc]

i agree about a doctor's visit as soon as possible. i've had the anemia..that is one side effect we shouldn't have to deal with. it's fixable

[fresnoborn]

I TOO AM ANEMIC. I WAS IN THE HOSPITAL THIS WEEKEND FOR CHEST PAINS AND HEART MURMER. I AM TOTALLY EXHAUSTED. MY HEMOGLOBIN IS 10 RIGHT NOW. WHEN THE EMERGENCY ROOM FAXED MY GI MY BLOOD RESULTS HE JUST REDUCED MY RIBAVIRIN BY 200MG. I DON'T KNOW IF THAT'S GONNA HELP MUCH CONSIDERING I HAVE STARTED MY MENSTRUAL CYCLE....AGAIN. I AM DUE FOR HYSTERECTOMY ON THE 20TH OF THIS MONTH DUE TO MAJOR PROBLEMS WITH UTERUS. DOCTORS SAY I HAVE TO HAVE IT..ANEMIC OR NOT. IT IS EXHAUSTING JUST TO WALK TO THE BATHROOM. MY GI TOLD ME TODAY ON THE PHONE THAT I AM RESPONDING AND MY ALT AND AST LEVELS ARE DROPPING QUITE RAPIDLY WHICH HE SAYS IS A GOOD SIGN BUT I FORGOT TO ASK HIM WHAT MY VIRAL LOAD IS. WHEN I ASKED MY GI ABOUT PROCRIT (PER CUTEUS RECOMMENDATION) HE SAID FOR US TO WAIT AND SEE HOW I DO WITH THE LOWERED DOSE OF RIBAVIRIN AND THE HYSTERECTOMY. I CAN'T EVEN CRY IN PEACE BECAUSE I KEEP YAWNING. ESPECIALLY WHEN I CRY. GI DID ORDER MORE BLOOD WORK AND SAYS AFTER THAT WE'LL SEE WHAT HE'S GONNA DO. I WAS SURPRISED HE EVEN CALLED ME THIS MORNING BUT ER FAXED HIS OFFICE MY BLOOD RESULTS. I WILL KEEP YOU ALL POSTED. OH IF DOC DOES PRESCRIBE PROCRIT, WHICH I'M PRAYING HE DOES, IS IT CARRIED AT THE LOCAL PHARMACIES AND IS IT COVERED BY MEDICAID OR IS IT ONE OF THOSE, LIKE PEGINTRON/RIBAVIRIN, THAT HAS TO BE SENT MAIL ORDER ONLY? THE PHARMACIST TOLD ME THAT THE REASON I HAVE TO HAVE MY PEGINTRON MAILED IS CAUSE I'M MEDICAID AND MEDICAID WILL NOT PAY PHARMACY FOR CARRYING IT FOR THEM, OR SOMETHING TO THAT EFFECT. AND I HAVE TO HAVE IT FED EXED TO ME FROM MCKESSON EVERY MONTH. SOMETHING ABOUT IT BEING AN INJECTABLE DRUG AND MEDICAID NEEDING PREAUTHORIZATION. ALSO, IS PROCRIT AND INJECTION OR IS IT A PILL?

[honey11]

Its really hard to read all of your posts and the struggles of the meds!  My heart goes out to each and everyone of you.  If you are having chest pains,,,,Call the dr ASAP.  Nothing to mess with. If you are having the normal interferon hell that makes you feel everyday is a struggle just to swing your leg out of the bed,,,hang in there.  You will have some breaks about the time it gets really bad.  You definitely don't want to stop and have to start back over because you will have same problems. Get with your dr and get some relief for symptoms you are having.  Some days are very hard to get up and dressed and out door but for me,,,,once I pushed and did it,,,I honestly felt better doing something.  Some of my hardest days were the days that I stayed in all day and on couch.  All I could think of was how yucky I felt on interferon.  Day by day,,,week to week,,,you will get there and be SVR and then you won't have to worry about it again.

[mrodriguez112704]

I AM STILL PLANNING ON HAVING THE NECK SURGERY.  I HAVE TO, I CANNOT CONTINUE DAY IN AND DAY OUT WITH THE HORRIBLE NECK PAIN AND NOW LEFT ARM PAIN/NUMBNESS/TINGLING; PINS & NEEDLES FEELING!  I SEE MY GI TOMORROW MORNING AFTER MY CT SCAN TO MAKE SURE THERE IS NOTHING ELSE GOING ON IN MY HEAD THAT IS CAUSING THE DAILY HEADACHES I HAVE HAD FOR SO MANY YEARS THAT I HONESTLY CANNOT REMEMBER NOT EVER HAVING ONE.  I SO HOPE THAT MY NECK IS ALSO THE DEMON OF THE DAILY HEADACHES.  AS YOU MAY RECALL, MY GI'S ASST. SAID DR. L----- SAID; NO SURGERY WHILE HE IS TREATING ME!  NO EXPLANATION JUST NO SURGERY!  I GOT NEWS FOR HIM, I HAVE EVERY INTENTION OF HAVING THIS SURGERY WITH OR WITHOUT HIS APPROVAL.  I JUST READ ON THIS THREAD WHERE ONE LADY IS HAVING A HYSTERECTOMY.  ANEMIA OR NOT!  I WILL KNOW MORE TOMORROW AFTER I SEE MY GI ALONG WITH THE FULL PAGE I HAVE TYPED WITH QUESTIONS THAT I WILL BE DEMANDING ANSWERS TO!  REMEMBER, I DO NOT EVEN KNOW WHAT STAGE OR GRADE I AM!  THE ONLY THING HE HAS EVER TOLD ME IS GENOTYPE 3.  IF THAT'S THE CASE WHY IS HE TREATING ME FOR 48 WEEKS?  NOW AS FAR AS CONTINUEING MY TX., I'M SURE I WILL STAY WITH THIS H_ _ _ FOR THE DURATION.  I SWEAR I WOULD REALLY LIKE TO QUIT!  I JUST WANT TO FEEL A LITTLE BETTER!!!!!!!  I CANNOT BARE MUCH MORE OF WAKING UP ALL THROUGHOUT THE NIGHT AND HAVING ALL THOSE THOUGHTS RUNNING THROUGH MY HEAD OVER AND OVER!  THIS IS A NEVER ENDING NIGHMARE!  I KNOW IT WILL END ONE DAY BUT RIGHT NOW IT CANNOT BE SEEN FROM WHERE I'M LOOKING!  I JUST WANT TO FEEL HUMAN, I WANT JUST A LITTLE MORE ENERGY.  I WANT MY HEAD TO QUIT FEELING AS THOUGH SOMEONE HAS A VICE ON BOTH SIDES AND SQUEEZING THE HELL OUT OF IT!  I WILL CONTINUE TO STRUGGLE THROUGH EACH AND EVERYDAY TO REACH SVR!

THANKS FOR LISTENING!
SINCERELY,
MARSHA

[cuteus]

I know of at least a couple of members that had surgery while on tx, and continued on with it and got SVR, it can be done with a little cooperation from dr. dumbo.  One had jaw surgery and the other I can't remember. They just have to monitor you more closely, a little more work that I guess they feel they don't need, too bad. GL and hopefully you will get both RELIEF and SVR!

[friole]

Sounds like you are loaded for Bear for your GI appointment.  I also think you can and should go forward with the surgery

ha ha Cuteous -- like that Dr Dumbo......

[fresnoborn]

I ASKED MY GI ABOUT PROCRIT. HE SAID NO. HE SAID THAT SINCE I HAVE LOST 28 LBS SINCE TREATMENT STARTED 17 WEEKS AGO, MY WEIGHT NO LONGER MATCHES WITH 1000MG OF RIBAVIRIN. HE REDUCED IT TO 800MG. I WEIGHED 170LBS 17 WEEKS AGO, I NOW WEIGH 140LB AND I AM DROPPING RAPIDLY. SO I CALLED MY PCP (PER CUTEUS GOOD ADVICE) AND SHE SAID NO. SHE SAID SHE WILL NOT DO IT FOR ME CAUSE MY GI ALREADY SAID NO. I HAVE TRIED AND TRIED TO GET THE PROCRIT AND I GET A NO EVERY TIME. WHAT IS IT? IS IT BAD SIDE EFFECTS OR SOMETHING? YOU WOULD THINK THAT THE DOC WOULD PRESCRIBE IT IF IT WERE NEEDED.

[jmjm530]

If my calculations are right, as a geno 1 you should be on 1000 mg even at your lower weight.

If your Hgb has dropped more than 2-3 points over a several week period you are a candidate for Procrit. At some point you have to decide yourself whether to go with your doctor's recommendations or get another medical opinion. I wouldn't wait too long because anemia is one of the worst sx and accounts for more tx terminations and dose reductions than just about anything else. Lower doses of riba mean less chance of SVR.

On a personal note I decided to stay at 1200 mg/day even though my weight dropped from 176 to 150 lbs with the assistance of 40,000 U/wk of Procrit. Now at week 32, my Hgb is dropping again so I may have to reduce to 1000 mg/wk but it will be as a last resort.


-- Jim

[cuteus]

Dear God! I can't believe your ordeal!
i had to change doctors 4 wks into tx, you might have to do the same. This approach is not healthy. Too bad you can't right click and copy and paste your symptoms to these drs, then you would see action! I am so sorry. Search for a new doc soon.

[friole]

You might try getting a referal to a hemotologist (a blood doctor).  Perhaps a specialist is needed here.  My GI automatically refers to a hemotologist to monitor all bloodwork