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
Hang in there you are approaching the finishing line,when you cross that line you will be happy you did it.I had chest pains on and off during treatment until 6 weeks post treatment.It had mostly to do with spleen and liver pains a med induce side effect.No worries it will go away,eat ginger for your nausea,I use to watch cooking shows to boost up my appetite and watch comedies to boost up my spirit.IMO relatively there is no difference in doing 24 weeks or 48 weeks in certain aspects since for me any how when I was on treatment it seemed like I was stuck in a time warp like time stood still,everyday was the same and yet different,sometimes minutes seemed to be like hours.A bit like the movie Groundhog Day.
A lot of things have greatly improved for me since I finished treatment,it was all worth it.
All the best to you for a successful treatment.
Dannyboi7
A lot of things have greatly improved for me since I finished treatment,it was all worth it.
All the best to you for a successful treatment.
Dannyboi7
Your comment is a breath of life to me. That your treatment seems to have worked is an inspiration.
During the first 16 weeks I was completely compliant with all the meds and followed a strict schedule. The problems began to be severe after the beginning of Week 17, thus the reduction to 600mg. I discovered that the chest pains began after I took my third pill on Tuesday (total for day was 600mg) and I was unable to sleep fearing I would not wake up. I went to clinic on Wednesday and they said that it was probably part of the TX side effects. I was unable to take any meds on Wednesday asI couldn't even keep water down. Thursday and today I have limited myself to 400mg and found that I can actually eat and function. I am scheduled for more blood work on Dec. 27 which will then be almost the end of week 18. I know that this not what the Doc ordered at this point but it may be the only way I can get through the balance of weeks.
My hat is off to everyone who is able to complete treatment and especially those who have to go 48 weeks or through more than one treatment process. They are much stronger than I for sure.
During the first 16 weeks I was completely compliant with all the meds and followed a strict schedule. The problems began to be severe after the beginning of Week 17, thus the reduction to 600mg. I discovered that the chest pains began after I took my third pill on Tuesday (total for day was 600mg) and I was unable to sleep fearing I would not wake up. I went to clinic on Wednesday and they said that it was probably part of the TX side effects. I was unable to take any meds on Wednesday asI couldn't even keep water down. Thursday and today I have limited myself to 400mg and found that I can actually eat and function. I am scheduled for more blood work on Dec. 27 which will then be almost the end of week 18. I know that this not what the Doc ordered at this point but it may be the only way I can get through the balance of weeks.
My hat is off to everyone who is able to complete treatment and especially those who have to go 48 weeks or through more than one treatment process. They are much stronger than I for sure.
When are you taking your riba ? It can keep you awake at night if you take it too late in the day.
My topnotch team said I could take it with breakfast and lunch, 5 hours apart was fine. This solved my sleep problems.
It might help yours too.
My topnotch team said I could take it with breakfast and lunch, 5 hours apart was fine. This solved my sleep problems.
It might help yours too.
not sure if i could give any advice but i will say i was out of breath throughout tx...unless i could grab a hold of something i could only walk a shot distance...when i was on incivek/riba/interferon i had to stop the riba for 10 days just to stay on tx...another time for 5 days....the riba was awful on my hgb...even while taking incivek i could raise my hgb by lowering the riba...the good thing is its most likely working....i would try to stay with the program till the end...if you have to stop work then stop to finish...life is shot and we will be dead a long time....good luck....billy
I am sorry for being somewhat vague as I was in such a state that I wasn't thinking correctly.
Are you treatment naive?
Yes
What is your stage and grade of fibrosis?
Unknown - no biopsy done at the start
What is your Genotype and which meds are you taking?
Genotype 3 - On pegys (1 shot per week and ribavirin reduced to 600mg per day
At what week did you become UND
I demanded that the doctor run a viral count several times and finally at week 12 he ran the test and it was UND
I was alternating the gp and specialist (see one this week and the other the following week) but then my gp had the motor vehicle accident and the specialist is on holidays.
I did go into the clinic where my doctor works out and see one of his associates. I had to explain what I was being treated for and the list of transfusions to date. He pretty did the same thing as the other 2 with quick exam and order up more blood work. My blood pressure today was 97 over 60. Basically he made sure to reassure me that I couldn't quit now as I will be starting my 18th week on Friday Dec. 21 and that I shouldn't give up when I have come this far.
I only took 400mg yesterday due to the chest pains. There was no sleeping last night and I have not taken any RBV today yet. I will try for at least 400mg preferably 600mg for today. The clinic is in another town and I had been told not to drive back at the beginning of Sept so my youngest drives to my town then drives me to appts which are all in different towns. I guess I am a little worn down and frustrated, I am just not accustomed to being sick. Other than 2 motor vehicle accidents and giving birth to 2 children, I have never missed a day of work so this being ill day in and out is difficult.
Are you treatment naive?
Yes
What is your stage and grade of fibrosis?
Unknown - no biopsy done at the start
What is your Genotype and which meds are you taking?
Genotype 3 - On pegys (1 shot per week and ribavirin reduced to 600mg per day
At what week did you become UND
I demanded that the doctor run a viral count several times and finally at week 12 he ran the test and it was UND
I was alternating the gp and specialist (see one this week and the other the following week) but then my gp had the motor vehicle accident and the specialist is on holidays.
I did go into the clinic where my doctor works out and see one of his associates. I had to explain what I was being treated for and the list of transfusions to date. He pretty did the same thing as the other 2 with quick exam and order up more blood work. My blood pressure today was 97 over 60. Basically he made sure to reassure me that I couldn't quit now as I will be starting my 18th week on Friday Dec. 21 and that I shouldn't give up when I have come this far.
I only took 400mg yesterday due to the chest pains. There was no sleeping last night and I have not taken any RBV today yet. I will try for at least 400mg preferably 600mg for today. The clinic is in another town and I had been told not to drive back at the beginning of Sept so my youngest drives to my town then drives me to appts which are all in different towns. I guess I am a little worn down and frustrated, I am just not accustomed to being sick. Other than 2 motor vehicle accidents and giving birth to 2 children, I have never missed a day of work so this being ill day in and out is difficult.
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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)