EXAUSING FATIGUE

[mrodriguez112704]

HELLO EVERYONE!  THANK YOU FOR ALL YOUR COMMENTS AND WELL WISHES.  MY NEW QUESTIONS IS WHEN I POSTED LAST WEEK I WAS WORRIED THAT MY TREATMENTS WERE NOT DOING WHAT THEY WERE SUSPOSED TO DO; GUESS WHAT, I SPOKE TO SOON!  THIS WEEK HAS BEEN THE WORST.  EACH NEW DAY I PRAY THE NEXT DAY WILL BE BETTER.  I HAVE BECOME SO WEAK, EVERY NEW DAY I FEEL EVEN WEAKER.  WILL THIS SUBSIDE?  I TAKE SHOT NUMBER 4 TONIGHT.  I HAVE TO BE ABLE TO WORK AND FEEL AS THOUGH I MAY NOT BE ABLE TO KEEP GOING.  I'M SO PHYSICALL & MENTALLY EXAUSTED.  OTHER THAN THE MAJOR FATIGUE I ONLY GET REALLY EXTREME HEADACHES.

PLEASE LET ME KNOW IF THERE IS SOME OTC MED. I CAN TAKE TO GET SOME ENERGY SO I MAY CONTINUE TO FUNCTION AS I NEED TO.

GOD BLESS ALL OF YOU AND THANK YOU FOR LISTENING.

SINCERELY,
MRODRIGUEZ112704

[friole]

sunspot
The referral to a hemo doc is a wise move.  My doc does that up front - before any problems.  My hgb went from 11.5  two weeks ago to 11.7 last Friday.  I swear, even that .2 makes a difference.  One thing to watch out for -- my hemo doc is associated with the oncology dept of the hospital here.  She was most concerned about the ANC (absolute neutriphils) and not the hgb.  The ANC drop is more critical to oncology patients.  However, she was not up to snuff on the Ribavirin effect to hgb, but I think she is becoming educated.  I even gave her some papers to read.

One more thing, I have read that some insurance companies will not cover procrit for Ribavirin induced anemia.  However, the doctor can use an oncology code when she/he prescribes and it will be covered,no sweat.

chellski-
I keep hearing your bloodwork is fine, but you have never posted any numbers.  Please get some numbers for us to review.  All of them.  It is your right as a patient to have all your copies.  I suspect both your white and red counts are too low for you.

Yes the meds are very expensive.  That is one reason the hemo doc was reluctant to consider Procrit.  Without rx the Neupogen costs about $2000 for 12 vials (which should last 12 weeks).  I think the procrit is about the same.  I know my partner's dad died of liver failure, and she had just paid for a new rx for Procrit at $2000 and was so pissed because the hospice nurses destroyed it.  So you need to get ahold of the manufacturer pronto and find out what kind of assistance is available.

Please get copies of all the CBC's tomorrow
Kathy

[chellski]

i'm week 22/48; many sides have come and gone, and none were fun, some mildly annoying, some horrible.  the last month i have been feeling totally lothargic, but the scariest is the shortness of breath.  i made an emergency appt w/doc this coming monday(he's on vacation for week after that and i won't wait any longer)  i have listened to "your numbers look alright" but something is NOT right!  i cannot breathe, my lung capacity seems that of a mouse.
why do we have to fight on this one? why will dr's not do the procrit as soon as their is a sign?
btw:  anyone know cost of procrit?  i'm on pegassist. (no insurance.
i was so glad to see this post m-rod, and dana, i too, will NOT stop my treatment!  i've come this far, i feel its working, and i want to complete - i would even extend (if allowed) just to be sure!
rock on girls - lets get better and not give up the fight!
chelle

[nanniegea]

I too felt horrible before I treated but now that I am treating I can feel little differences already. I still feel awful from the meds but I can tell things are changing. I don't know how much damage you have but it would be well worth it to find out and to then treat, you will feel better than you do now. Just think about how much damage is being done to your liver everyday that you put tx. off. Please think about it, it is your future....May God bless.

[sunspot]

Thanks for that info SM. I had no idea it could cause permanent damage. If the hemo doc does not work out, I may switch Dr to the University of Alabama's Liver Center.

Michelle, not to shock you but I remember reading that Procrit costs about $400. If I get mine, I'll let you know right away.

Dana

[snook_man]

You Hemo is VERY low, and it is not good to force that upon the body for any length of time.You don't want to have prolonged anemia.....it causes Left Ventricular Hypertrophy (thickening of the heart muscle causing enlargment) and brain ischemia.   Another one of those well kept secrets.  That's why so many end up with permanent heart problems and "brain fog".
Demand procrit, there is no need to suffer and possibly cause permanent sx's.

[honey11]

Mrodriguez,,,,Week 4 is still early in the game and you will feel better soon but then hit some lows and climb again.  If you are tired,,,don't fight it.  Just sit and look out window lol  You can clean your house when you are off the tx or get some help now while you are feeling bad.  You will get a burst of energy soon and find you can catch up on all the things you are behind on. Hope it gets better soon!

[friole]

I agree with everyone else.  Most of the blood drops happen in the first few weeks.  You need to have blood tests done now.  It is very important to do this for yourself, and, like Jim said, be in charge of it.  Get all your test results if you don't have them already.  It does take some time for the Procrit to kick in, so it is important to act now
Best luck, Kathy

[dendel]

This Tuesday will be my 18th shot.  I am so tired all the time.
I do not know how anyone works. All I want to do is lay down.
I'll find out on the 21st if I can get Procrit. I hope so. I
have been sleeping eight to nine hours a night. And I still
wake up and its like I didn't sleep at all.  I take care of my
grandson and it is very hard.  I just can't wait for it all to
be over and for me to feel awake.  Adele

[jmjm530]

Treatment can do that to you. It will get better but it may take time. Meanwhile, rest, drink plenty of fluids, try and keep your food intake up and coddle yourself.

As others suggested, at this point in treatment, the symptons could be related to anemia.

What you want to do is get your pre-treatment hemoglobin level. If you hemoglobin is 10 or below OR if it dropped more than 2 points within a three-week period, you are a candidate for Procrit -- an injectible drug that will raise your hemoglobin back up. At this point in therapy you doctor should be checking your hemoglobin level every week or at least every other week. If not, insist on it.

Let us know how things go.

-- Jim

[cuteus]

that definetely sounds like what I felt when my hgb dropped below 11.5. Any drop, even if does not qualify you for Procrit, can be felt big time. It is a shame drs wait for it to be below 10. That is so debilitating.

[rearfang]

I hope you two will soon be feeling better. I think the posts above have provided good advice. Hang in there.
Lauren

[sunspot]

My Dr does not want to treat until the hgb is in the 8 range. I was living with a steady 10.3-10.6, my last two tests came back at 9.6 and then 9.9. My baseline is 16. I insisted on a referal and I see a hemo doc Monday. I'm so weak it's a sorry sight. I think I'm on week 31/48, I can't remember anymore.
I won't quit now and I hope nobody else does.

Dana

[MsTigerHawk]

I have never even tried treatment, and I'm so tired and fatigued all the time, and have so much muscle and joint pain, that I can barely drag myself to work each day.  I can imagine what hell I would be going through were I to try treatment.

[cougareyes]

I so relate to you emotionally. I'm on week 10 and I'm so wiped out. I'm working only 2 days a week and spend alot of time in bed. It's driving me crazy, my blood counts aren't low enough for procrit but my doc says the meds cause the dizziness and exhaustion also.
Although the last year before I started tx I was starting to get run down, I was still a relitively active person. I fight with myself that it's all in my head but when I can't breath and the world in spinning I find that just relaxing is the only thing that helps.
My lexapro was upped to 20mg this week because I was starting to get too frustrated and anxious(about feeling bad all the time), I'm hoping the days will come soon that I can get back to some sort of life. In the end I know it's just one day at a time; and that is the only thing that keeps me going.     thanks for listening

[snook_man]

I agree with Cuteus on this one, have some blood work done. Such a drastic change in physical steam, could possibly be from anemia. Check your RBC's, and if low demand procrit. Takes two weeks to get your numbers back up, but you will feel a lot better. I would also ask the Dr about possibly getting on an AD like Effexor to take the edge off. Effexor helps with depression and anxiety.
Tonight is shot 47 for me, and still working fulltime.

[cuteus]

it could very well be that the ribavirin is doing a good number on your hgb, I found out that ANY drop, no matter how minute would be felt big time.  You are at the mark for the anemia to start.  keep an eye on your bloodwork and if it becomes extreme, insist on Procrit. Most people expect a big reaction with the shots, but it is the slowly creeping riba that will give you that extreme fatigue and shortness of breath.

[lackalustre]

even with anti depressants, sleep meds, etc...  i dont think there is an easy way to get thru the treatment.  honestly.  but we do what we have to do to get rid of the virus.  its one day at a time.   rest when you can, exercise what you can,  eat good as possible.  try to stay positive, and   you will make it.

[mrodriguez112704]

Thank you so much for your comment.  I am 45 as of 9-8-05, but I feel as though I am 95, seriously!!!!  I know it will get better, I just want to hear it from others that have already been where I am at with the tx program.  I am very lucky to be able to miss work if I just cant produce on any given day.  I just want some energy.  On Sat. & Sun. I go from one piece of funrniture to the other, just trying to get comfortable.  I look around and see all the things I need to do.  I might get up and dust one end table and litterally feel like I just cleaned the entire house.  That simply kills me mentally and seems to put me in the bad mood zone.  Example:  Just looking out my living room window letting my mind run wild seems to make me very mad.  I ask myself why are you mad?  I do not have a clue.  Yesterday putting lotion on my legs, I realized I was crying as if I was at a funeral.  The mind games are really getting to me.  I will succeed though, I'm just very glad for this forum to vent and hear from others that know what we are dealing with day in and day out.  

Good Luck to all!!!!!!!!!!
sincerely,
mrodriguez112704

[Aubbie]

HI, IT will get BETTER!!!! ITS the 4th shot and mine was the worst up until 8th  shot . But I have lung difficulties and I am getting better. IT is the medicine, and everyone says that we are all different and react different. But MINE were like yours , how old are you. Im 52 and I think they will get better. Positive thinking and MIND SET< some days you might have to miss work, everyone amazes me, they all work!!!!! Im tring to get my house cleaned, and after I heal up lungs better then I will have energy. I wish you luck, stay strong, compromise and take a day off , TALK TO MD TOO!!!!! I laid in bed and would eat, sleep, rest and take pills and that was it. for weeks. I am wondering if my REBETOL is worse than the shot.ITS shot day today and I will try harder and I know how you feel , good luck and this is the best place to go for support. Aubbie GOD BLESS!!!