scared

I am starting wk 7 but haven't had my injection yet.  I realize I have been getting very short of breath, dizzy, numbness and tingling.  Emailed nurse this am and she responded my counts were really down - rest, rest, rest. small meals, naps.  Last night is when it got really worse but then got a bit better once I relaxed.  Talking made me dizzy last night.  I think when I relax and consciously breathe for a long time not getting up it gets better but I am so much more dizzy today and I am scared.  Pretty soon I am going to emerg I think.

[Trinity4]

Counts are really down?  Sounds like your hgb may have tanked and you may be experiencing the effects of hemolytic anemia.  Have they discussed prescribing Procrit (Epogen) or if that is not an option what a ribavirin dose reduction?  You certainly don't want a dose reduction, especially in the first 12 weeks of treatment so Epogen would be your best bet if indeed you are anemic.

Trinity

[paen53]

I agree with Trinity. I suggest contacting your Dr/NP to find out which counts are low, HOW low and what will be done if they go even lower. It does sound more like your hemoglobin is taking a nosedive and the faster it does that, the worse we feel. If at all possible, NO dose reduction this early in the game. Health does come first, of course, but there are helper meds to get you through this. On a positive note, a drop in hemoglobin on tx  is a good thing, strangely enough and means the meds are doing their thing. Hang in there and get those numbers...Pam

[lapis]

Yes, I remember how scary it felt to get so short of breath, and dizzy.  I was winded after carrying a laundry basket down a short hall.  At first I thought it had to do with blood sugar, then I learned it was about the anemia, which came on in the first month of my tx.  As Pam said, anemia is a good indicator of a positive response to tx, but it doesn't feel good when it's happening.
Hang in there, do get checked out if needed, and keep us posted on your progress.

Lapis

[babs824]

i have those symptoms pretty often from anemia from riba. they are much less if i eat frequently especially with riba. watch heavy exercise even going up and down stairs. i almost fainted last week brushing snow off my car. it makes u feel 100 yrs old but is probably normal.

[babs824]

ps numbness dizzy and tingling were all a part. kinda scary the first time, now i just sit down.

[eureka254]

Definitely agree with the above, you should be getting some hard numbers..."my counts were really down..." doesn't say a whole lot, and it doesn't take long for some people to have serious anemia pretty fast.  If it's anemia causing your dizziness and faintness, it's most likely a result of the riba pills rather than the injection meds.  If your nurse is unresponsive and you continue to feel worse, especially if you're not able to get up from laying down or feeling weak from walking, have someone take you to the ER.  If you do, make sure to let them know that you are on treatment for Hep c and give them the name of your doctor.  Hopefully with rest you will  feel better soon and that won't be necessary... good luck and keep us posted.

[Bill1954]

One quick thought to tag on to Eureka’s advice. If you do end up going to ER, be sure to take your meds along with you. It’s unlikely they’d keep you there overnight, but if they did, they probably won’t have interferon/ribavirin in their formulary at the hospital.

I agree with others; it’s likely your hemoglobin has dropped based on the symptoms you described. Get checked out and if needed, they might intervene with Procrit (generally preferable) or dose reduction.

Let us know how things work out-

Bill

[imhermom]

Thank you all, you were very reassuring.  I made it into the clinic and saw the nurse that was on duty and he reassured me and said my body will start to adjust a bit after around 2 wks.  Also that laying down was the best thing for that really faint feeling and I find he is right.  And I agree - going up or downstairs is major heavy exercise - and I am letting hubby do the laundry (gasp).  And I started taking an iron supplement, not sure about that, we'll see how it goes.  
I really was afraid I wouldn't be able to breathe or wouldn't wake up.  
THANK YOU, you have no idea!  
I have to go lay down now, lol.  Ann

[James10500]

     Excessive iron in the body of a liver patient can be extremely dangerous.  In extreme excess, iron is toxic to the liver, and can lead to cirrhosis, liver failure and liver cancer. Furthermore, there is growing evidence that even mildly increased (or sometimes even normal amounts of iron) may cause or enhance the amount of injury to the liver in the presence of other liver diseases.  This applies especially to people with alcoholic liver disease and chronic hepatitis C.   In fact, iron overload is commonly seen in  patients with alcoholic liver disease and chronic hepatitis C, and has been found to worsen prognosis, and to decrease the responsiveness to treatment. Liver scarring and liver cell damage are directly related to the iron content of the liver cell.  Since a person’s body is unable to eliminate an overabundance of iron , neither iron supplements nor vitamins containing iron should be included in the diet of a person with liver disease, unless it has been determined that there is an iron deficiency.

http://www.liverdisease.com/minerals_hepatitis.html

Fwiw I live at 10,500 feet. I take it easy at stop a lot when I ski.  I'm in week 23 of treatment.  I get dizzy short of breath ect...... My HGB is low, it all seems to be part of the deal.

[Susan_1a_CC]

I just wanted to add onto James' post about iron.  What he says is certainly so however, there are times when ones doctor may put them on iron, as mine has.  I know that the clinic where I am in a study isn't going to allow for any rescue drugs and they've told the participants, across the board from what I can deduce, to take an iron supplement.  For myself, my ferritin levels were low and had to be brought up before I'd be considered for a trial.  Also, I've seen it posted that if your iron stores are too low than procrit (?) won't be able to help you.  Maybe your doctor should run an iron panel to get a baseline on where you are.  Best of luck.  

[imhermom]

Well until I see nurse on Monday, I quit the iron supp, it was constipating anyway-I was wondering about toxicity.  If James can ski at 10500' I'm sure I can get along.  I didn't mention that in my anxiety I even called Pegetron nurse who is supposed to be avail 24/7.  Well, that was useless, she said she'd note it as a side effect and to call them and let them know if I took an ambulance!!  Then they "told off" my nurse who sent them a nasty letter.  oh and dr/nurse decided I was anxious from interferon, but I can't take benzos.  
I should have posted instead!

[James10500]

I know you can do it !  I did not do a thing for the first 3 months, except a short get outside bike ride once and a while.  But after that I'd crash for a few hours.  I went back to work yesterday and worked the local school kids program (skiing).  It was really good because I forgot about Hep C for three hours.  Sounds like your working in the toughest of times, that takes a lot.  Give yourself credit your doing it !

[spectda]

As others have mentioned on your thread "counts are down" is not enough information. Depending on how down they are you may need procrit so they don't drop any lower. While you may get used to some drop in hemoglobin, if it gets too low you will need the procrit to continue taking the proper level of ribavirin, to continue treatment, and to be safe. Many of us on the forum have had to take procrit during treatment.  

It is true that hemolytic anemia (red blood cell destruction from the ribavirin) is often a good indication that you are getting enough ribavirin. Also more people that do become anemic have success with treatment.

This is not the same as anemia from lack of Iron in your blood. If your hemoglobin (HGB) drops below 10 g/dl generally the treating doctor should prescribe procrit injections to bring your red blood cell level and hemoglobin level up to a safe level. For many people the hemoglobin level will drop but it will remain above 10 g/dl

Although it is not common some people have such bad hemolytic anemia during treatment that they need transfusions. You need to know what your hemoglobin level is and your doctor needs to be paying attention to it.

Is your treatment doctor a hepatologist or Gastroenterologist who has a lot of experience treating hepatitis c?

Good luck,
Dave