stopped treatment at week 9 and tood 2 units of blood

Hi Everyone:

It has been a long time since I visited this site. How are you all doing. I have to take some time to read all the posts too know the news.

As far as I am concerned, things are not too good right now.
At week 9, my Hb level was ~7.5, so was asked to stop Interferon (Surprising as Ribavarin is the one which causes hemolytic anemia).
Tx was Ferrous fumarate, folic acid and Vit B complex. But had unbearable stomach ache after taking these for 10 days. Checked the Hb level, and it still was 7.5. So was asked to take 2 units of blood. This was 9 days ago. since that day, I am having temperature up to 102 C, every day and have shooting pain and swelling in the liver area.

I have stopped taking Riba and Interferon for the past 3 weeks. Today the Hb level was around 9.5, but still have temperature, so the doc asked me to wait before I begin the combo therapy!

Has anyone faced similar situation? I have stopped taking the Tx for the past 3 weeks. Does it effect the treatment time? Meaning, is all the 8 weeks of treatment a waste?

Thank you
Sunag

[cuteus]

I am so sorry you are facing such a disturbing situation.
I don't think you were well managed by your MD, my opinion based on the reccomendations for management of anemia. Are you able to get a second opinion at this point?
Your anemia should have been managed by riba reduction and Procrit, before considering tx termination. It might not be too late to restart tx, but you need a better team on your side.
I was given Procrit when my hgb went to 10.2 and my riba was reduced to 800mg from 1000. I have been able to continue to wk 64 last night with no other major events.
Take charge of your health ASAP

[Amerabrit]

I was so sorry to read your post, sounds as though you're having a really tough ride...  I hope you find the answers you're seeking here, very best of luck to you.

[Sunag]

Hi

My original dosage of Riba was 600 mg/day, which i thought was low based on the general dosage you guys talk about.

I have genotype 3b, and used to weigh 150 lb, and now I am down to 130 lb (in 4 months). Even if the dosage is based on body weight, 600mg was low from the start.

My GI is the best in town, and when he is not helping me, I do not know who to turn to. I am Ok with the blood transfusion, but wondering why I get temperature every day.

Since yesterday, the pain in the abdomen and in the liver region is bothering me. In the past 2 weeks, I have been in and out of the doctors office and the hospital almost every day, and am tired of it.

Yesterday, woke up from my sleep and started to scream at my daughter who was right in front of me. Only when my husband asked my what I was up to, REALISED THAT MY DAUGHTER LIVES THOUSANDS OF MILES AWAY!
Asm I goi ng crazy or what?

--Sunag

[donAlfonso]

Sorry to hear your story, think your doc needs a refresher course.  Your hemoglobin should never have been allowed to go so low. I hope you can get back on track.  

My doc just started me on Procrit because I complain so much of fatigue.  I was surprised, because my RBCs are always just above the cutoff point, 'crit 10.5, 'globin 31.5 last month.  He said he doesn't really think it will help the fatigue, but he is willing to try.  I like his attitude.  I'll let everyone know in a couple of weeks if it seems to make any difference.

dA

[MajNeni]

I'm sorry you had souch a bad experience. Many wonderful older GI doctors do not know very much about treating HepC.  You may do well to find the nearest University Hospital and get a consult; perhaps your kindly local doc can refer you, and perhaps he will work under the guidance of a doc who is closer to the front lines.
I had a similar experience; I wiped out after only 3 1/2 weeks; I was hospitalized, etc., and got 2 units transfused.

Your doc is treating you with supplements that prevent/rule out  the other three kinds of anemia, but not the hemolytic anemia.  As you wrote, that is caused primarily by the ribavirin.  It kills off red blood cells prematurely.  RBC's should live about 130 days, and are replaced normally at a rate that keeps you in balance.  Riba kills off RBC's after 60-80 days, so your system (particularly your bone marrow and other sites where RBC's are made) is trying madly to keep up.  Cutting back on the riba and giving you Procrit should have been the first line of defense.

I don't know about your temperature.  How was your WBC (white blood cell count)?  It can be lowered by the interferon; the bone marrow is inhibited in producing WBC's; and then you are much more susceptible to infections.  An infection could cause those other symptoms, the temperature and the pains.  Ask your doctor about this.  By the way, the life of WBC's is much shorter, and variations in WBC can develop very quickly. Neupogen is available to boost your WBC levels.

My 'good old' doc was ready to restart me two weeks later.  I didn't have confidence in his knowledge, asked for a 2nd opinion; anyway, one way and another, after my old doc played telephone tag with THE DRUG REPS, seeking advice... I restarted briefly after about 12 weeks, and this time my WBC's dived immediately, so I stopped in week 1.  
I got a new doc, "washed out" for 6 months, started up with close monitoring.  This doc had treated hundreds of HepC patients.  He caught the decline promptly, put me on Procrit and Neupogen,and only later reduced the riba to keep me afloat.  We agreed to let me ride low numbers... I was able to finish the 48 weeks, and am now SVR and beyond the 6 months.

[Christie2004]

My husband was on PegIntron alone for his second year of treatment (relapsed after the first, and this was when PegIntron was just hitting the market-Riba wasn't being used with it consistently yet).

He cleared and is sustained to this day from Peg alone.

[MajNeni]

Lack of apetite is a real problem during tx.  Eat more of anything that does appeal to you, even if it is fattening stuff.  Many of us had cheese cake or ice cream binges during tx.  Try to get some good protein, but preferably not too much red meat; eggs worked for me, easy and quick to fix, etc.;fish is good.  Veggies and fruits and fiber are good. Soups may go down well; there is nice variety in the markets now.

If you can't think of anything that appeals to you, get a supplement from the drug store, such as Ensure.  It is balanced and loaded with vitamins and other nutrients.  I know it in several flavors, in 8 oz cans; they're like little milk shakes.  They use it a lot in hospitals.  One or two cans of those daily should help you keep nourished adequately, with a little real food on the side.   Go with anything that works!
MN

[newtex]

Sorry to hear your having it so rough...I started on Procrit 12 days ago due to low WBC (2.58) and Low RBC (2.50). I recieved a lot of positive feedback about how well Procrit helps with the sx of anemia...I have started to notice a change in the last 3-4 days, and now today has been my best day at work so far....Thank God for small changes feeling so good. I have had a really hard time for the past 6 weeks (6/48), so today has felt extra good....I understand fully that I might feel bad off and on during treatment. We have to stay strong and lean on each other. God bless.

[Sunag]

thank you all for your suggestions.

I will definitely go and see another GI.
My GI was not bothered about my low Hb level. I asked him for Procrit and he suggested I continue on the meds he prescribed.

What I dislike about some doctors here, is they behave like "larger than life" and act stupid (Sorry, if I offended anyone).Their EGO's so big that they refuse to listen to what patients have to say.  
It was my primary care doc, who suggested to get blood transfusion. I will have to look into my blood work to get the numbers, just read the Hb level.

FATIGUE is beyond compare. I am lying down most of the day. I get hungry during the day, but get sick looking at food. That is another concern, as I am not able to eat!

Hope this transfusion will help and will change my doc and get procrit to help me through the sides of Riba.

Will keep you all posted.

take care
Sunag

[Califia]

I just wanted to strongly second what everyone else has said about the way your doc chose not to manage your anemia:  IMHO this is not state of the medical art and is absolutely not acceptable.   What is just as troubling is the symptomology you're experiencing post-transfusion.   In spite of how lousy you're feeling, unfortunately now is the time to pursue other medical resources in your area.  Second and even third opinions could be very useful.  Myself, I am not sure I would retreat with the first doctor.  One strike and you're out in my game.   Very best of luck to you, and may the life force get you back on track as soon as possible.   Please stay in touch with us and let us know what's going on.

[lackalustre]

it doesnt show much understanding for a dr. to give you ferrous fumarate.  many of us with liver disease cannot tolerate iron supplements as the compromised liver processes them very slowly.  ferrous fumerate will make me very sick fast.  with bad stomach aches.   i use green chlorophyll or wheat grass juice or other green juices/tablets to raise iron levels.  although after taking ribaviran it will take some weeks for iron levels to rise again.  good luck to you.   please educate yourself and get a better dr.

[Sunag]

Hi

Yeah, I am aware of iron causing damage to the liver, and also aware of the reason for the unbearable stomach ache I had on on week of iron.

But I live in a developing country, or what the western world likes to call "THIRD WORLD". So Doctors have their own way of treating patients. These are  the ones with years of experience treating patients.

Each time I go to see the doctor, I go along with my husband and with a BUNCH OF Hep C/medical LITERATURE. I go there as an educated patient asking the doctor to prescribe certain things. But I was given the look " who is the doctor here" and was asked "What do you do for a living? are you a medical professional"?

I went to him, specifically to get me procrit, but the answer was no, that is not required, take these supplements. I some times feel that I am dealing with quacks with alphabet soup at the end of their names.

Can you beleive that I have to go to the doctor each time I need to get an injection (peg)? The meds did not come with the video which you all talk about which helps us to get trained to do the job. The doctor did not know how to use the Redipen. Sales Reps from Schreing Plough had come down with 2 demo kits, explained it to the doc, and then the doc gave me the first injection, which in total took 8 hours (from the initial try to the sales reps demo, and the final shot).

REGARDING DIET:
I am a vegetarian, so am sticking to a low protein diet and a low sodium diet. But icecream and milk shakes sound good and will try those for now.

As of today, my level of fatigue is low, with a temperature of 102 C.
I am ready to fight and take it one day at a time.

Thank you again for all your support

Sunag

[cuteus]

if you don't have these yet, print the ones about managing anemia for the next visit to the duck...err doc

http://www.projectsinknowledge.com/recent/indexg.html

[honey1616]

I'm sorry to hear that you have to go through so much grief to get your shot etc...its hard enough doing treatment without dealing with that on the side..Please let us know how you are doing!!