Low Hemoglobin Anemia while on Hepatitis C treatment
You have heard me say it before: With treatment, there will be side effects. I have written about them and about ways that you can manage them. Now it’s time to zero in on anemia, it’s causes, and symptoms. There are 3 ways that your doctor can help you deal with it. If your Hemoglobin gets too low, you simply try to get close to normal again. If this is impossible, you may have to discontinue treatment. Those cases are rare if you and your doctor work together, and if your body cooperates. This is a nuts and bolts version. In order to read an article about how to survive anemia click here , and you will be magically transported to that blog.
Here is the simple version – You will get lab work done called a Complete Blood Count (CBC) that measures 3 things:
Red Blood Cells (RBC) – The main carrier of oxygen
Hemoglobin (Hgb) – The number of Red Blood Cells in your blood stream.
Hematocrit (HCT) – What fills up the Red Blood Cells.
All 3 work together to carry oxygen from your lungs to the rest of your body. Then they gather up carbon dioxide in your blood and bring it back to your lungs where it can be exhaled.
A low RBC is called anemia. Ribavirin basically kills the red blood cells faster than your body can make them. It can also make them lose their normal shape, BUT, it can also kill the Hepatitis C Virus! Many people have what is called hemolytic anemia from Hepatitis C treatment.
Most doctor’s will want you to have your blood drawn and checked monthly. If you develop anemia, you may have to have them done weekly until you get your Hgb stabilized.
Let’s look at the Hemoglobin lab values and what drugs are used to “rescue” them. This is your best friend talking and it is NOT a science lesson. It is simply my understanding based on my research and experience.
Hemoglobin Normal Range:
Adult Males – 12 to 18 gm/dl
Adult Women – 11 – 16 gm/dl
If your Hgb gets below a 10, your doctor may need to rescue your blood count so that you can continue treatment. It’s important for you to ask your doctor, and your insurance company, how far they are willing to let your Hgb levels get to. Just ask. You have a right to know. There are steps to take that are part of the treatment protocol. Your doctor should be aware of these. You should too! That is why I am writing this post. Here are the common steps taken:
- Reduce Ribavirin dose. It is the first line of treatment for anemia with the Hepatitis C medication. You may have your other drugs reduced as well. This is normal. Mine dropped to 7 within weeks of starting treatment. I panicked when the dose was reduced!
- Take Procrit or Epogen. These are prescribed medications, and are given as injections. Many times you can give yourself the injections at home. It may take time for your insurance company to process it. Mine took weeks and it got rough. My doctor gave me a Procrit injection in the office to get me by. ASK before treatment begins and get the ball rolling for the payment of rescue drugs. It takes a few days to work and once you respond, your Hgb numbers will go up FAST!
- Blood transfusion. My insurance company putzed out on me for a few weeks and I raised a fit at their main office. The virus was undetected in my bloodstream at the time, and I did NOT want to stay on the dose reduction. Also, I was afraid of having the treatment discontinued. When my Hgb dipped to 6, my doctor finally sent me to the local hospital overnight where I got a 3 pint transfusion. That was when I discovered the vampire side of me. I went to a football game the next day and actually stood and cheered!
My Ribavirin went back up gradually as we went through those same 3 steps a few times over the next several months. To be honest, I do not even remember how long the reduction was or in what increments. Ah, the brain foggy memories. I did have the weekly blood labs drawn whenever I was low.
What are the symptoms of anemia? You may not need a blood test done to be able to tell when your Hgb is getting low. Shortness of breath is the easiest for you to detect. You feel like a ton of bricks is on your chest. Walking across the room takes a huge amount of effort. There is simply not enough oxygen! Do not be alarmed if you feel like you can’t catch your breath. Let your allied health team know that you need some help till you can get your Hgb levels back up.
Rapid heart rate is a sign that your body is screaming for oxygen rich blood. Your heart is beating fast in an effort to get rid of carbon dioxide. It does not help, but it keeps trying. It is frightening, I know.
Fatigue sets in. The end result is that you tire easily. Your poor muscles just turn into jelly and you sit. Go ahead and rest when you feel like it.
Headache, dizziness, and inability to concentrate are all signs that your brain is showing the signs of long term anemia. It does not help your insomnia either. OH! And you can get pale and goth looking. Haha! It is kind of like hair loss in that you look as bad as you feel.
Do not lose your head when anemia hits. It is tough, but there are ways to deal with it. No one wants to have a dose reduction, take more injections, or have a blood transfusion. Keep in mind that this is ALL related to the Hepatitis C treatment. It will not last forever. I have stage 4 cirrhosis and successfully completed treatment. It took some work. There were many times that I was really scared, like when I felt weak and couldn’t even walk to the bathroom. Family and friends do NOT understand what you are feeling like. There is just no way. If you hang out at a Hgb level of 10 or 11, it can be frustrating. Your Hemoglobin may be just high enough that you do not need a rescue, but just low enough that you feel like a wet noodle.
If this blog puts your mind on overload or makes you worry, go to one of my other pages or watch a Youtube. You may need to just log off for a while. Come back to it later. The whole point of this post is that YOU can take good care of your body, survive treatment with new drugs, and keep your hemoglobin in a normal range.
Low Hemoglobin Anemia while on Hepatitis C treatment can be treated
Iron rich food or vitamin supplements can help anemia most of the time. However, remember that hemolytic anemia is usually caused by the medications you are taking, and vitamins will not cure it. If you have cirrhosis, your doctor may caution against high doses of iron. Mine allowed me to use B12 sub-lingual when working. You will stay in communication with your allied health team. By following your doctors instructions about getting your labs done on time, you are staying on top of anemia. Worrying about being taken off of treatment can lead to panic. Ask for a copy of your labs and watch how the levels are doing. Take good care of yourself. You are helping your body work with the medications in order to get rid of the virus. You can do this.
Your Best Friend in the Anemia Battle, Karen the Vampire :O
To Read about Blood Transfusions click here
For more stuff about treatment click here where there Is gobs of stuff.
Lab values courtesy of http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2754513/
Pics courtesy of anemiaofchronicdisease.com
drugonline.org
Low Hemoglobin Anemia while on Hepatitis C treatment
21 thoughts on “Low Hemoglobin Anemia while on Hepatitis C treatment”
Ma’am Karen,
My name is Aqib and I am from Pakistan, I would like to say thanks to you, for providing very helpful knowledge of Hepatitis C disease and would appreciates your efforts and contribution regarding this disease.
Unfortunately, my mother also has this disease and she has been under treatment by Pegasys and Ribavirin.
She had diagnosed Genotype-4 Hepatitis, her Hgb reduced to 5.5, and we will take her for blood transfusion. Hgb level also reduce before with same level approx and at that time also she got recovered by blood transfusion.
I have been finding the cause of low Hgb and found yours contribution which definitely very helpful for me and my mother.
Bless You my prayers are with you, may you will always be happy and well.
Thank you,
Regards,
Aqib
Aqib,
I am so happy that you found the site. Your mother is very fortunate to have such a caring son to look up information for her. I wrote about my daughter, but the same heart sentiment is true for sons also! As you have discovered, the blood transfusions help so much with energy and to help her stay on the medication.
How wonderful that you have good doctors who have knowledge of Hepatitis C. I hope she continues her treatment with strength to help her be rid of this virus. She can be with you for many years to come.
I am always glad to know that my words are comfort and encouragement. It brings me so much joy tonight. xo
God bless you,
Karen
P.S. Give mom a hug for me!
My poor mommy finished her treatment and is awful shape
She has lo Hemoglobin at 8 and today 7.5 she has Pneumonia and sooooo week cant function. Its sad to see her like this She leaving hospital for rehab i wish she was staying there im so concerned. Please send words of encouragement and advice.
TIA
Such a sweet daughter you are. If you could have seen me at the end of treatment, you wouldn’t have thought I would make it. Did she get a blood transfusion? Sometimes when it’s that low, the doctors like to let you build it up slowly on your own. It may take a while, but she WILL get stronger. Rehab sounds like a good transition because they can keep an eye on her and she will still be a step down from full hospital care.
Please give her a big hug from me and all my love to you both. Will you keep me posted?
Thanks so much for stopping by xoxo Karen:)
Hi
My mother in law has liver cirrhosis.. Kidney 80℅ damaged…weight 30kg….now she got admitted for high fever 104° and low blood pressure 70-40…hemoglobin is 7.5
Potassium and magnesium getting low ..
RBC WBC also reported low…
Manual platelets count is 90,000
Pls advise her stage and tell if any thing better we can do…
Rimmy,
I’m hoping that the doctor has given you a stage by now. So many things are taken into account. Her platelets aren’t so bad, and I’m sure she’s getting a blood transfusion. However, the kidney damage sounds bad. Check this blog out of stages of cirrhosis.https://www.ihelpc.com/what-are-the-4-stages-and-symptoms-of-cirrhosis/
My prayers are with you and your mother in law. xo Karen:)
it is 8 week of treatmint out of 12 week pcr <30iu and hemoglobin 11.5 what is further req feeling triedness and fogy
Hello are you saying you are on week 8 of 12? What treatment are you doing? Your hemo is a little low and that will cause the tiredness, weakness. Mine went from 14.8 to 9.7, all the doctor said was lay down.
Talk to your doctor about your feelings, he/she will probably tell you this is normal. Take Care, rest when you need to. Don’t push yourself, you are on treatment. Good luck, Dee
My name is Tim, I live in Southwest Kansas USA. In 2012 when diagnosed with stage 4b Non Hogkins Lymphoma I found I also had chronic hep c jeno type 2b. Went through the chemo and had complet remission, then started interferon and ribivarin and after treatment my viral load went to base line from 8 mill. This last year my cancer came back as well as the hep c. Finished 6 rounds a salvage chemo as well as 18 rounds of radiation around both eyes. I started Sovaldi and ridivarin on Feb. 20 this year, three month treatment with a around three weeks to go. I have been rundown and weak thinking it was all the stuff I’ve put my body through. Was admitted into ICU with a hemoglobin of 3.2 so far I’ve had nine bags of packed red blood and going back today for two more. It keeps bouncing between 6 and 9 with the transfusions. I don’t want to stop the hep c treatment this far a long. Hoping the packed red blood will keep me going until I get done so I can look forward to stem cell or bone Morrow transplant for the cancer that is back. Sorry this stretched out so long but thought I would show what a LOW hemoglobin count was. Thank you for the chance to vent. God is good!
Hay Tim,
You’ve sure been through the ringer with this. I’m glad to hear you’re hanging on and getting good health care. The transfusions were the lifesaver for me too. Have they offered you procrit yet? You can give injections at home. I’m staying with a friend on treatment and they’re reducing his Ribavirin. I’m with you… I RESISTED stopping treatment. If they can rescue you with transfusions – that’s a wonderful thing! I got down below 5 but don’t remember how low exactly. I sure know how you’re feeling though buddy. And even though red meat is hard to process with your liver damage, eat some occasionally. Get your nutrition my friend and get through the treatment.
My heart is with you and yes… God is good. Thanks for sharing your story. You’re a miracle.
xo Karen
Hi there! WOW, you are really low. I was at 14.8 when I started treatment (tx), fell to 9. could not catch my breath but my doctor just told me to lay down. It is very difficult to finish the tx but I did it, Karen did it, you can do it too!
I finally realized that the only thing that mattered was getting through the tx and if they told me to lay down I did. If I didn’t my feet went numb, then ankles and on up to my knees. I would lay down them as I did not want to fall down. There were days I did not think I could do another pill or shot but forced my way through. Karen and I both did the Inf, Riba and Incivek. UGH
I decided I would eat dirt if I had to, to survive. Not everyone can do this. A friend of mine could not hack it over 10 years ago, today he is now dying of end stage liver disease.
The family is in denial, no matter what I say they think he is better. Hang in there, do what the doctors say you should do. They are the specialists. I will pray for you Tim and I am sure Karen will too. Please keep in touch, take care, Dee
Thank you for your prompt replies. I am back in ICU out patient right now getting two more bags of red blood. It is good to communicate with people with similar experience. Not a lot of palliative care in my part of the world, Southwest Ks. Turn your watch back fifty years. :0). Just a few more weeks and I can say good by to these nasty meds one more time. Pray that you can continue to help those in need here.
Good Morning! I appreciate you sharing your story. You are very brave to continue with the treatment despite the low low hmoglobon. Im shocked that the doctor has let it get this low, I commend you for sticking with it, many don’t. It reminds me of when Karen and I treated. It is rough. There were days I wanted to stop. I did the Incivek, Riba, Inf and it was so difficult. 6 months of hell. Unrelenting. The last week. I have to admit I cut back on the ribavirin thinking that I knew it stayed in the body for up to 6 months. I was also seeing people who could only treat with Incivek etal for 10 – 12 weeks getting and remaining cured. I could not take it anymore. Take care, drink lots of water. Please let us know how you are doing. I’m sure the doctor has told you but be careful.
We are also suffering same issue with mother who has low HB and now she is taking 3rd month treatment of sovaldi . She has severe backache, feeling sleepy all the time.
Very depress by seeing her situation
Hello I am so sorry to hear. Is she drinking a lot of water? The medication can cause dehydration which can add to aches and pains. Being sleepy is a common occurance. When I treated my hemoglobin went from 14.8 to 9 and I had trouble doing anything.
It was so awful. I asked for something to help me but my doctor said that the side effects from injections of I think Procrit would add to my discomfort. He told me to just lay down. Try to think that I was going through a hard treatment. It will improve once off the medication. Is she taking anything else beside Sovaldi? Ribivirin can add to the fatigue if she is taking. Try to get her to at least drink some ensure to keep her body supported. Ensure with a scoop of ice cream is good. I try to drink a protein drink every morning to keep my muscles strong. I have cirrhosis and need all the protein I can get though I don’t eat red meat. Without enough protein our body can hold until
How much longer does she have on the treatment? Try to help her by telling her what a good job she is doing, tell her you are proud of her. Try to be as supportive as you are able. You also need some support. I know from experience how hard it is to be a care taker. You are really such a good child to help her like this. I wish I had had a child to help me. When I treated 4 years ago it was so difficult. I treated for 6 months the second time and it was much harder than the first. I wanted to quit so badly but my Aunt said it would be like a prisoner with 2 weeks left, making a break for it. Not much sense in that so I continued on. Forcing the water, forcing myself to lay down. I watched funny movies listened to music to lift my spirit. Prince’s song, We’re going to party like it’s 1999 comes to my mind right now.
Bless you, take care of you and your Mom and know what a great job you are doing for her. Soon she will be done and will be back to herself.
Dee
Thank you Karen and everyone else that posts their experience with the medications.
God bless you all. I don’t feel alone in the struggle.
I researched all I could when I started treatment. Solvaldi, ribovarin combo hopefully for only 12 weeks.
I checked with my doc and got the go ahead to take vitamins e, b12, biotin and omega 3. I read they would help with the side affects.
I drink a gallon of water a day. I’m lucky in that by coincidence I had dental work and cleaning scheduled in my first week.
Normally I have a higher (but not gross) level of saliva. If I have dry mouth I can’t imagine what it’s like for others. I had a rash but Lotrimin cream took care of it. First week my face felt like sand paper. Age perfect Hydra nutrition by L’Oreal fixed that in a couple of days too.
Tylenol and Tylenol 3 help with the headaches I get for two or three days every week.
Hemoglobin has gone from 14.6-11.9 in three weeks and I have to say it’s the worst side affect. Not sure where they are today but I’m guessing lower. I know my levels aren’t that low but I walk like a granny now. The only time I feel OK is when I’m resting. I’m a marathon runner who can barely take out the garbage now. It’s hard. Still it could be so much worse.
My slow cooker is my new best friend as I have the most energy first thing in the morning.
I feel blessed to be treated. To be on a twelve week program and that there is support out there. My husband has been his usual terrific self. Thank god for his support.
Thanks again everyone. Your posts mean more than you could know.
Caligirl
Hay Caligirl!
Thanks for dropping by. You sound like an amazing woman…. and one I’d like to be friends with! You’re never alone in the struggle. It sounds like you’ve got all your bases covered on vitamins and nutrition. Your liver must be in good shape since you’re only taking treatment for 12 weeks. I totally wish you all the best in that.
Your hemoglobin will creep back up slowly. Sometimes the doctor reduces your dosage to help you levels come back up. As long as you know your physical limitations, and it sounds like you do, you’re in great shape.
When you feel short of breath, just sit down. Yay you for your running! I always wanted a 26.2 bumper sticker. For now, I’m walking really fast and getting out as much as I can. You’ll be a little weak and are wise to do your granny walking. I didn’t do any running til a few months after treatment was over.
If you ever need anything, let us know. xo
Thank you for your kind words. All your work helping others understand and cope with this treatment make you the amazing woman. I love your picture. Your face is filled with light. I can’t wait to get back there myself.
When I went on my meds I was told I might get tired and to take Tylenol if I get headaches. No antacids for heartburn. That was it. I have no idea what my viral count was or is. I had blood work and an ultrasound done.
Without your efforts and other kind soles like you I would have no idea how to cope. I definitely would not have known to take the vitamins.
I was pretty sure I wouldn’t get treated as I’m not that sick. I think it’s because my brothers and sisters have passed away from this disease. One by one. I think I got treated due to my family statistics. I struggle with survivor guilt over it. I researched on line and made suggestion to them but I was always the health nut and no one would listen.
It’s shocking to me that you can’t get treatment until your really sick when it’s often to late. Unless you can afford the meds yourself. I would recommend doing whatever you have to to get treated. Mortgage the house, sell the car, borrow whatever you can from whomever you can. whatever it takes. stand on the corner with a sign…can’t afford the Co-pay. Please help.
Don’t wait.
I’m blessed to be treated. So blessed.
I pray that soon the meds will be available to everyone before they’re I’ll.
They were need to wake up. There are millions of Americans afflicted with this. I’m sure it’s less expensive to provide the treatment than it is for millions of transplants. If there are even that many donor’s.
Sorry for the melancholy tone. The big picture terrifies me. Or maybe it’s a depression side effect day.
Caligirl
Thanks for encouraging treatment. I was the SAME. I was prepared to do anything to treat. I worked and fought for insurance. Gosh what a mess. I wouldn’t be here today though. Yes, you are blessed… and the treatment time is short! Yay!
I hope that your side effects are few and your sleep is good. You will have all the time in the world. I know that it’s hard not to be depressed with all the meds you are on. Kudos to you for reading positive information. That will help you keep your chin up while you keep taking the meds.
You’ve been through a lot from the Hepatitis C Virus. To lose family members and then to have it yourself is a pretty traumatic thing. If you’ve always been the health nut, then you did all you could by being a role model for others. Even now, this post is a beacon calling out to anyone who reads it to get treatment and take care of their health. Life is beautiful. Even though the side effects and symptoms, we get a new start every morning.
xo Karen
Hi. Again. The virus is now undetectable in my system. Yay. I cried. I was genome 2 which is why the short treatment duration. I’m learning what to ask.
I’ve not had a headache in ten days. Yay again. The decrease in hemoglobin is slowing down which I’m hoping means it will stabilize.
I’ve had insomnia for years now so I didn’t notice a difference there. I watch a lot of classic moves and binge watch favorite TV shows. Hulu and Netflix are great at two in the morning.
I’m in my sixth week which means my countdown to the end starts next week.
Stay strong everyone. When the meds get on top of you remember you are not alone and it’s better than the alternative. There will be an end. Easy for me I know as I’m only on a twelve weeks treatment. For those of you on longer treatments. You are a source of encouragement for others and you may gain decade’s for your efforts.
Keep well.
We LOVE undetectable! Makes me cry just reading it….. Your body knows how to heal and it will work hard to keep the balance and as you said, stabilize.
Netflix became my best friend during cancer. I watched the entire series! haha. But it rolls right into the next episode and lures you. Try to watch it in the living room. I found by taking my lap top to bed, I would sit and let it scroll through hour after hour. Good luck with that. lol
Thank you for the encouragement. It’s great to hear how it’s counting down for you. All my best.
xo Karen
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