What kind of symptoms should I have after one week?

I'm on Pegasys and ribavirin, started it one week ago.  I tried interferon shots about 10 years ago for 6 months, stopped because it wasn't affecting the virus.  I'm 1b and stage 2 fibrosis.  

I wasn't this sick before.  I am extremely tired, weak, heavy breathing, tightness in chest, facial numbness, joint pain, extreme mental confusion.  I' trying to keep working.  How long will it take these symptoms to back off.  I'm prepared to handle flu-like feelings, but these symptoms are very extreme, if they do not back off I don't know if I can continue.  My wife is being supportive but at the same time is worried the tx may be worse than the virus.  I do not feel like myself.

[HCA]

Ten years ago you would have taken the old three times a week interferon and no ribavirin.
The new regime is much more effective.
Every one has a different reaction to the drugs-some walk it,some take to bed and most are in between.
The symptoms sound like anemia caused by ribavirin.Get your doctor to check your HGB.There are rescue drugs which reduce the anemia and attendant breathlesness.
As you are still managing to work you are not a worst case scenario.
Yes it probably will get easier-work with your doctor,but don't give up treatment.The treatment is worse than the virus it's true,but if the disease progresses then you can end up with very serious liver disease-far worse than the treatment.We've all felt like throwing in the towel-hang in!!!!!!!!!!!!!

[can-do-man]

wow, while im no doctor but those symptoms sound extreme to me. If i was you id be putting a call in to my doctor asap. Or maybe a trip to the ER. Better to be safe then sorry. Best of luck to you, and let us know how things turn out.

[HCA]

Forgot to mention,the first shot is usually the worst,and you are only one week in.Also not so sure about the anemia as ribavrin takes a while to build up.Same strategy though-work with your doctor and stick with the regime

[can-do-man]

curious, would just one week on tx. bring those severe sides.

[can-do-man]

You didn't state your age but only one week into tx. heavy breathing, tightness in chest, facial numbness, should not be taken lightly.

[sick ron]

This is sick ron's wife.  I read him your responses.  We are very grateful for you all answering so quickly.  He had to lay back down.  Will check in later. Thank you.  Thank you.  Thank you.

[GoofyDad]

That sounds like clasic anemia to me. Normally, it comes on more slowly, but we do have a member here, NYgirl, who was incapacitated in about 2 weeks. Mine hit pretty early too, but not as bad as Ron describes.

Procrit is the support drug that helps. Call your Doc as soon as you can. THe sooner they get to the bottom of it, the better of for everyone.

Others have used the ER, where they go imediate procrit. As can-do-man said, that might not be a bad option since it's the weekend. Or maybe an urgent care clinic.

[MajNeni]

Ron,
     Definitely contact your doc ASAP and have your blood counts checked.  Ribavirin causes red blood cells to die quite fast... Normally, red blood cells (RBC's) live to around 120 days, and your body replaces them at a steady rate. The ribavirin comes along and kills a whole lot of cells cells that are about 80 days or older, and suddenly your RBC and your HGB is really low, and your blood can't carry the oxygen to everywhere where your body needs it.  If your hemoglobin (hgb) suddenly drops by 2 points in a short time, like a week or two, it can feel like what you describe.  
     Most people on tx stabilize after getting hit by a mack truck on the first shot or two.  Your doc should monitor your CBC at least weekly for a while until you stabilize; if your HGB keeps dropping, you'll need Procrit.  Many of us had to go that route, myself included.  But it does get better, and you can do this.  10 years ago was the dark ages, as far as HepC treatment is concerned.
     I don't think you mentioned nausea, but somebody above did.  Anything with ginger in it helps get rid of nausea: ginger ale, gingerbread, ginger snaps, etc.  Keep a little bottle of ginger ale near you, it counts as water.  And no matter what, push that water down, one liquid ounce daily for every 2 pounds of your body weight.
     By the way, I think getting hit by the truck like that, to me, is a sign that your body has waged an epic battle.  I'd bet that your viral load (VL) has already taken a huge tumble.  Some progressive docs will now let you get a VL test at 4 weeks in...
just a thought, if you need an incentive.
Maj Neni

[cquest]

Oh yes, call the doc if you haven't already...don't take any chances, it's your life there buddy...

I too had weird numbness but right after the shot, maybe 6 hrs I think...my fingertips were numb and I think that's the main reason they yanked me off the tx...now they say I can go back on but I'm going back and forth on this (again)...I was on meds for my gallbladder/stomach situation...got yanked off those after 2 days because of the sx which were restlessness, confusion, even depression (if that's being listless and having no desire to comune w/my fellow man, don't know, never been depressed) so another one down the drain...But now what are they going to do? You know, I tell ya...what the heck? I'm a little tired of not being able to take meds cause they all make me sick, I don't know about the rest of you...
Cin

[friole]

sick ron and wife, I agree that it may be your hemoglobin. I also agree that your symptoms are severe, and need to be checked.  Since it is Saturday, you might consider the ER.  We must be careful for our over all health. Ron, did you have any heart problems prior to tx?  Do you know your beginning hemoglobin count (hgb on the CBC).  BTW, when you are feeling better it would be good to get every copy of every lab tht has been done.  THe PCR, the CBC's , the genotyping -- you name it.  Doctors speak vaguely to us and it does not help.


cindy - not again.  WHat are you - allergic to all meds?  I think a call to Dr Cecil may be in order.  A good discussion with him on your riba rash and the mushy place and your general intolerance to meds.  There must be an answer for you.  My heart goes out to you - please hang in there.  Kathy
Dr Cecil's websight:
http://www.hepatitisdoctor.com/

[lilmoma]

You sound just like my hubby, man he was sooooo sick!!!
For about 6 weeks he could do little more than go to work and sleep. come to find out he needed to be put on procrit, he got real upset when he found out he was going to have to do one more shot every week, and he was ready to throw in the towel, but it has gotten better for him since then,....and then he remembered the alternative to tx................
dont give up, just keep coming back and let people help you through this,...I know Im gonna need all the help I can get when I take my first shot on thursday.

lilmoma

[NYgirl]

It sure does sound like you have anemia and you should get a CBC (blood test) right away to check your hemoglobin.

I was doing FINE and then dropped 7 points in only a bit over ONE WEEK - it was DEVASTATING.  You see it's not always how LOW it goes but also how FAST.  Your body just can't handle it!

There are wonderful "rescue" drugs that a doctor can prescribe to help you with this but it WONT act quickly - it takes a few weeks so you should check it out ASAP.

Of course...none of us are doctors and we really don't know what is going on with you so you should DEFINITELY get to a doctor ASAP.

I have been very lucky side wise (except the anemia which is now completely under control) - except last night, show 21 I got an almost 104 fever in the middle of the night and thought I was going to DIE.

Just going to show that sides CAN pop up at any time during treatment - all of our bodies are different and they just can't be anticipated.

Best of luck - go to a doctor as soon as you can and find out what is wrong.  Don't take no for an answer.

[can-do-man]

Just don't take so long to check in here. You know were such a nosey bunch of hepers.

[Mister beagle bailey]

Hi,
You know I have not seen her here in over a week.  I think last Sat. she was not on, will go back and check.  

Well, went to Dr. Thurs. and HGB dropped to 9.6, so now I'll get procrit weekly.  He also said he will give test at 12 weeks PCR.  The reason he wouldn't give it to me at 4 weeks is my Ins. would not had paid for 2 PCR that close together.

Hope all out there are doing well,

      The Beagle

[cquest]

Yeah, I'm a delicate flower I guess...I've always had allergies since I was a kid...tonsils always acted up and they figured out it was caused by allergies and it coincided with the 'Jet Stream' yes folks...the freakin jet stream...that stream of air that flows a certain time of year and brings pollen and whatever with it...well whatever it is I'm allergic to it...then the 'boating incident' when I was 9, on a boat fishin all day in Mexico in the heat and after we got back to the cabin, I was covered in a rash = aluminum boat = nickel allergy that has  persisted to this day, for some reason going to the beach stirs it up, something about the grasses...sometimes regular grass gets me too, especially in the Spring...me and the demon rash have an uneasy truce at this time...soooo...

What can I do? I am just sensitive...I guess it's a good thing in a way, I never took a lot of drugs so my liver isn't too bad off...just the viral load situation...I still haven't decided whether or not to go back on tx...
Cin

[sailinlady]

Deb, I'm fine.  Been busy with a friend visiting from Florida.  Thank you for your concern.  You too Mr. B.B.

Hope all are doing well with low sx.

[sailinlady]

Just want to add what a great place this is.  I disappear for a week and I'm missed!  How cool is that?  I don't know how I would have been able to start tx without all of you.  The information and support I have gained from this forum is phenomenal.  I knew absolutely nothing and was scared to death when I first started lurking around.  I now feel I have a decent understanding of this nasty virus and I know I will beat it.  Thank you all!

[can-do-man]

Glad to here your doing fine, i just fiqured you might be out sailin lady... Good luck to you

[sailinlady]

Thanks.  Soooooooooo wish I was sailing but it's work & energy I don't seem to have now!

[NYgirl]

I haven't seen her and am quite concerned...anybody seen her around at all?

I hope she is ok.

Karen if you are out there please let us know...it's been at least a week since I've heard from you!

[PKCO]

Ron,

You need to call your doc ASAP and describe your symptoms. There is hardly any chance that you have anemia from tx (hemolytic anemia) since you have treated only a week. However, some of the symptoms you describe concerning your breathing and tightness of chest mimic those that can be caused by a reaction to the drug (ribavirin)itself. You may be having an adverse allergic reaction to the riba and it is best to address this immediately. The prescribing info for the drug comes with your meds. Read the warnings and cautions for adverse events. This is covered there.

It may be something else entirely, but since this is one of the possibilities you cannot put off seeking an answer.

Best regards,
PK

[Mister beagle bailey]

Hope your feeling better this morning.  With me if was my HGB, as I already had anemia before starting txs.  Now I get 40,000. units of procrit a week and feeling better.  Tonight is shot #7 for me,with 17 shots left.  Can't wait till it's over
Check in this morning and let us know how you are doing.

[Mister beagle bailey]

Hope all are doing good this morning.

Ron-- With me it was my HGB, I already had anemia before starting tx so I started on procit and now take 40,000.units a week.  Hope your feeling better this morning, check in and let us know how your doing this morning.

I just posted this same post a few miutes ago, and it disappeared.  Any way tonight is shot #7 for me, with 17 left.  How did all do with their shots this week end?

Dyce did you get approved yet for tx?  Amommy and cajun hope you did well with your shot this week end, have not seen yous on the board in a few days, hope all is well.

           BB

[fresnoborn]

hi ron. when i first started tx i had hardly any symptoms. i felt pretty darn good for the first 15 weeks or so. i was working fulltime as a reference librarian and going to school at nite fulltime. now i am into week 30 something (hard to remember these days) and i am no longer working and i am taking 2 classes online. now i am having most of the symptoms and i am tired all the time. for me the sides have gotten worse as i get further into treatment. i am almost done and look forward to taking my last shot on the 48th week. if i had to do this all over again i probably would. to me, it is worth it. it is hard but it is doable. sides are different for everybody. it is hard for me to believe that some people never have any sides. we can do this. we are stronger than the dragon and we will win. good luck to you and take care of yourself, pamper yourself. you deserve it.

[NYgirl]

Well, went to Dr. Thurs. and HGB dropped to 9.6, so now I'll get procrit weekly

Thank God I think you should have done this earlier with your history but I guess it's really just such a messed up situation.

Two times a week REALLY helped me out so very much - it was the turning factor and made me into a human being again.  Of course I hated doing it but hated the anemia so much more.

You are going to experience a great up in your hgb now I just know it.  

I don't know how you have been doing all you have with that low a number my good friend - I just really don't.  You must have the constitution of a pitbull! And the personality of a Bichon....or ooops a Beagle.

As long as they are named Bailey that is.  :)

Your friend and twin
Debby

[dyce]

I'm still waiting on meds . The ins. co told me the meds. would be approved thru. mail order, so it won't be much longer. As soon as the meds. come to the G.I's office we're going to get started.

            How is your hmg. holding up? I beleive your doing shot 7 tonite . Five more after tonite. and it's pcr time for you. Can't wait to hear your results!

    C.Ya., Dyce

[Mister beagle bailey]

ny girl--  It has to be the twin thing, Thurs. at the Dr. my HGB was 9.6 and so they decided on weekly shot.  I was surprised to they didn't give it to me 1x a week.  
I guess I'm just use to it being low.  How are you doing today and what shot# did you take Fri.?

  The Beagle, your twin  :)

Dyce--- That's great you'll be starting soon, your meds will be here any day. Yes, shot #7 tonight.

  the Beagle

PS---Did you all see Rocker, he did shot # 6 and had no sx's at all since he started treatment.  Wow to be so lucky, that's amazing but there are some that get no sx's.
I have seen JMJM in almost a week, must still been combating the killer moths. hehehe

      BB

[PKCO]

IMPORTANT WARNING:Return to top
Ribavirin will not treat hepatitis C (a virus that infects the liver and may cause severe liver damage or liver cancer) unless it is taken with another medication. If you have hepatitis C, your doctor will prescribe another medication to take with ribavirin. Take both medications exactly as directed. Ribavirin may cause anemia (condition in which there is a decrease in the number of red blood cells). Tell your doctor if you have ever had a heart attack and if you have or have ever had high blood pressure, breathing problems, any condition that affects your blood such as sickle cell anemia (inherited condition in which the red blood cells are abnormally shaped and cannot bring oxygen to all parts of the body) or thalassemia (Mediterranean anemia; a condition in which the red blood cells do not contain enough of the substance needed to carry oxygen), or heart disease. If you experience any of the following symptoms, call your doctor immediately: excessive tiredness, pale skin, headache, dizziness, confusion, fast heartbeat, weakness, shortness of breath, or chest pain. Keep all appointments with your doctor and the laboratory. Your doctor will order blood tests before you start taking ribavirin and often during the first 4 weeks of your treatment.Your doctor or pharmacist will give you the manufacturer