Aa
Will I make it?
I am in my 17th week of treatment (24 week total). My RBC and Hemoglobin are really low. Hemoglobin hovers between 8.5 and 7.8. My blood pressure hovers around 78/41 but does come up to 83/50 after recommended 2 units of blood for the transfusion every 2months. I have survived through blackouts, peeling skin, horrible rashes, weight loss of 25 lbs and fevers with nausea and vomitting. The doctor has decreased the Ribavirin to 600mg for the next 4 weeks, but I have chest pains, can't breathe due to shortness of breath. My specialist and my gp are not available now until middle of January 2013. I just don't think I am going to make it at this rate.Could I reduce the Ribavirin to 400mg for awhile?
Best Answer
The reduction of the ribavirin will help at least it did for me once I brought it down to 400mg. The weeping is something I can relate to and it comes at any time and anywhere. They told me in the beginning that it would be tough but I thought I was tougher. It is a brutal treatment for a brutal disease.
You are in week 14 so just keep telling yourself that you are more than 1/2 way there! I know that the time seems to go slower as the treatment goes on but this is more due to our anticipation of the end.
With support from this group and any other network (family, friends, internet), you will always have feedback when you need it.
You are in week 14 so just keep telling yourself that you are more than 1/2 way there! I know that the time seems to go slower as the treatment goes on but this is more due to our anticipation of the end.
With support from this group and any other network (family, friends, internet), you will always have feedback when you need it.
Well here I am in week 19 and by reducing to 400mg I am actually starting to believe I can make it. I tried 3x to get full blood panel done and each time they were unable to get blood (usually 3 techs with 3 tries each tech per visit). The blood would start and then quit after a little dribble, followed by clotting in the needle itself. They have asked me to come back on January 3 to try again. Hopefully this time we will get some samples so we can see where we are at.
This can be brutal and truly the most difficult thing I have had to deal with. I keep saying that it will be worth it, and remind myself that quitting now would be ridiculous after all the horrible things I endured through this already. At this point all I can do is keep going. Humans have spirit and courage. The days tick down, that is all that counts now.
This can be brutal and truly the most difficult thing I have had to deal with. I keep saying that it will be worth it, and remind myself that quitting now would be ridiculous after all the horrible things I endured through this already. At this point all I can do is keep going. Humans have spirit and courage. The days tick down, that is all that counts now.
I'm week 14 coming up. Geno 2. Meds reduced to pegInterferon 135mm (9 doses at 180mm) and 600 (3 riba pills) daily ( two weeks on reduced riba dose)
I have suffered low hemoglobin and received 3 pints of blood. Lasted a few days only. Reducing riba seems to have helped for now,
Seems to be no such thing as a "free day" in this game. I've also taken to weeping everything I see something sad or stupidly sentimental. We have to get through this, what can we do but soldier on?
Pete
I have suffered low hemoglobin and received 3 pints of blood. Lasted a few days only. Reducing riba seems to have helped for now,
Seems to be no such thing as a "free day" in this game. I've also taken to weeping everything I see something sad or stupidly sentimental. We have to get through this, what can we do but soldier on?
Pete
so sorry to read you post and I recognise your frustrations...I also struggled with low hgb and several transfusions through treatment and I was so close to giving up...many times. But I didn't and I can now look back and really know that the illness will go away. I assure you - but take good care of yourself. Ask to get blood works every week to check on your hgb. I also felt like I couldn't breath, and I didn't sleep well...hang in there. Get all the support you can and call your doctor or nurse.
The transfusions helped me getting through treatment - I hope it will make you feel better as well.
Very best of luck!
The transfusions helped me getting through treatment - I hope it will make you feel better as well.
Very best of luck!
Just to let everyone know that I did try to keep going on the 600 mg but my body just wouldn't fly with that. Without permission I have reduced the dose to 400 mg. and this has been a vast improvement. I am not having the blackouts, hives, fevers, rashes (like measels), coughing has subsided to only a couple of times per day. My energy level is better and no more chest pains!!
This level seems to be manageable, so I will continue on. The doctor at the clinic has ordered blood tests for this week. I really think that I will have better levels this time around for RBC Hemogloblin, etc. My skin has started to rehydrate and I feel that I can finish this off. I might even get back some my weight once my appetite returns.
Thank you to everyone for their support as I was "on the edge and clinging by the fingernails."
This level seems to be manageable, so I will continue on. The doctor at the clinic has ordered blood tests for this week. I really think that I will have better levels this time around for RBC Hemogloblin, etc. My skin has started to rehydrate and I feel that I can finish this off. I might even get back some my weight once my appetite returns.
Thank you to everyone for their support as I was "on the edge and clinging by the fingernails."
Also:
There are other supportive treatments you should talk to your doctor about. For example, they can give you Neupogen (Filgrastim) to boost your blood cells. There are other options as well.
I really hope I'm wrong about this, but I get the impression the team treating you is not that aware of things, or maybe a bit inexperienced with hep C and managing all the associated problems of treatment.
There are other supportive treatments you should talk to your doctor about. For example, they can give you Neupogen (Filgrastim) to boost your blood cells. There are other options as well.
I really hope I'm wrong about this, but I get the impression the team treating you is not that aware of things, or maybe a bit inexperienced with hep C and managing all the associated problems of treatment.
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The most important part of the treatment is the first 12 weeks,if you were compliant in doing all your meds in those first 12 weeks and you were UND then the rest of the treatment just a mop up.The problem is you don't know if had achieved an RVR which is a good predictor for a SVR.I which case it would be important to finish the 24 weeks even with a dose reduction.On SOC one of the independent predictors for a SVR is the 80/80/80 rule which means patients who took more than 80%
of their prescribed IFN, more than 80% of their prescribed RBV,
and are treated for more than 80% of the planned treatment
duration)